TangledMe

Climbing Back On The Blogging Train, Part 2

2011-09-23T17:37:00.002-06:00

Picking up the story. Last I left you, we had seen the cardiologist. The week prior to seeing cardiology was NOT fun. We have added some new mechanical members to our family, and along with that, all the ins and outs and breakdowns that come with them. Oh, and the beeping, lots and lots of beeping. Mostly when you are asleep.This is the oximeter, or pulseox:

It tells us what his oxygen levels are, and what his heart rate is. This particular machine is where we found out that Little Man not only desats, (oxygen goes too low) when he is asleep, he also desats as soon as he lays down. He can not keep his oxygen levels above 92% when he is prone. AND add to all that he is also having heart rates that are below 50 every night. The pulmonologist (sleep/lung doc) said we needed to wake him up every time his heart rate drops below 50. We, mostly my sweet Bald Man did that. Blearily, sleep deprived, tried at least. After we saw the Cardio and found out Little Man's heart was fine, I called the Pulmo and said if it was really important to Little Man's health that his heart rate not drop below 50, they really needed to get us nursing and have someone trained and, most of all, AWAKE, be there to shake the boy when he needed it. No nurse, so we set the alarm to go off at below 40 instead. It hasn't ever gone off at that level yet.

When the pulmo said we needed to start Little Man on oxygen, she shook her head, we shook in our shoes. Between the autism and his behavior problems, we all had our doubts over whether or not our boy would be able to tolerate the oxygen delivery system. A CPAP was out of the question. With all my heart, I believe what happened next to be nothing less than a miracle. We asked for prayers and prayed fervently as we watched the tanks and the oxygen concentrator brought into our home.

(The IV pole is for his feeding pump, which he still uses every day, for fluids and sometimes for food when he isn't eating.)

Little Man can not have the windows down in the car, because he HATES wind in his face. Remember The Swine Flu Debacle of '09? The one where Little Man would NOT wear his oxygen and even hated the blow by? Yeah, well, we remembered it really well. Enough to be afraid of what was ahead of us in terms of getting him used to wearing an oxygen cannula at night. It was very anti-climatic and I mean that in the best way possible. This child, who can't bear to have anything blowing in his face, accepted the oxygen cannula without a blink or a fuss. CREAK, CRASH! That is both his parents falling over in shock, surprise and ultimately, gratitude. Miracles happen.

goofy kid, he couldn't smile while his eyes were open. This is our new normal and he just accepts it. Who knew? If you are scratching your head in wonderment, so is EVERYONE else who knows him! Between the oxygen therapy and the increase in one of his meds, Little Man began to sleep better, much to our relief and sanity.

We have seen the cardiologist, check, everything is fine with his heart. Do they know why he is having bradycardia every night? Nope. Um, maybe it is his VNS he had implanted for his seizures is causing it the cardiologist wondered... So off to Neurology we go. They said it was unlikely, but possible. The only way to know was to turn it off. Oh yeah, I guess I forgot to mention Little Man had started having grand mal seizures at night again. The first since we had the VNS implanted years ago. Turning the VNS off isn't a great idea unless he is inpatient.

So now we had a referral to see the Ear, Nose and Throat doc, (ENT). What I am most afraid of is that they will want to take out his tonsils and adenoids and we will go through all that, operation, and recovery, (with an older kid, ACK!) only to find it didn't help a bit. So, off we went to the ENT and they said.... wait for it..... um, we need to take out his tonsils and adenoids. When I expressed my concerns to the ENT, he said, I had a valid point. And with "syndromey" kids, they have a much lower success rate. I loved that he made up that word, "syndromey" and that he admitted it might not work. He also said that it the least dangerous thing to do, with the greatest chance of helping Little Man, even if it doesn't "fix" the sleep apnea. It will not be a day surgery for our boy, because he is complicated and already having problems breathing, I was informed that we will be being admitted to the PICU. Gut punch. On one hand, I am glad they are going to monitor him closely, but the other hand, my mommy hand, wants to break down and cry for the step up in medical complexity.

So October 5th is the day. I am dreading it. I wish it were much sooner so we could just get it over with. I am not really scared about the surgery, but I am terrified of the recovery. All I can say about it, I am glad he has a g-tube, so he can and will be hydrated, medicated and fed without him having to swallow anything. They will also be doing some more tests with his VNS to see if it is causing the problems and scoping his mouth and throat to check on things. ,

Let me end with every thing else going on, we are enjoying life! Little Man's school and behavior program continue to rock and he is doing really well! In his new school he is a star student and beloved by teachers and students alike. GRATITUDE!

We continue to feel blessed, with our beautiful grand children, with our home, our marriage, our friends and our family. Bumps, and anxiety, but abundantly blessed with so many things!

Climbing Back On The Blogging Train Part 1

2011-09-22T14:42:00.002-06:00

I am back, sort of. One of the reasons why I haven't returned to blogging is a sense of guilt. Of the blogs I had abandoned reading, (all of them!). I felt like I couldn't go back to blogging myself, without being a participant in other blogs. But my life has pushed me to return to blogging, regardless of my reading, because things are happening quickly and I really need to keep track of this stuff, for Little Man's sake, my sanity and the journaling aspect of the whole thing.

Life was busy and good from last you heard from me. I continued to work part time, as a big chain store portrait photographer. (I can tell you now, cause I quit in May) I am not sorry I took the job, not sorry I quit. We parted on a high note, with the company being sad I was leaving, so I felt good about that. It was great while it lasted, and I learned what I needed/wanted to learn. Mostly about getting more comfortable with posing people. DONE! In fact, I am tossing around a thought of doing a posing workshop for beginning phototogs.

Moving on to summer. Summer was kind of rough, summers always are with Little Man.Still, it was MUCH better than last summer, because he has his behavior program working with him. He had a tough time, I wasn't getting enough time away from him, it was fairly stressful. Medically he was stable, so we were okay. Fast forward to August and the Boy stopped sleeping. Not the 3-5 days a month he normally does, but every single freaking night. If I had been working it would have killed me, the only survival tool I had was my nap times. Bald Man was just trying to work and bring in the dough to keep us going.

I knew better than to call his doctor, because the last time this happened, she wanted us to do a sleep study, which never got done. I have a great excuse though teacher, I promise! His last sleep study was scheduled while I was doing this. I suppose I don't have a really great excuse for the next year, except I was busy recovering, then moving etc and most of all, he was sleeping fairly well. I really, really don't deal with his stuff very well unless it gets moved to the top of the emergency list. The not sleeping thing did it. I scheduled the sleep study for July 16th.

Little Man did really, really well, or really, really bad, depending on your point of view. He sure showed them he was capable of sleeping for less than 4 hours in an entire night!

The sleep doc informed us it was hard to get information for a sleep study when they don't sleep. Am I the only one who thinks that is just bizarre? Why would we go see a sleep disorder doctor if our kid slept? The tech seemed super concerned about Little Man's breathing and kept coming in, and at one point, put a nasal cannula on him. Yeah, that was the end of the sleeping for all of us.

I went back on Thurs to discuss the results of the sleep study with the doctor. They were only able to use the pulse ox that monitors oxygen and the CO2 monitor for 20 minutes of his sleep study. It was very significant with lots of low oxygen (desats) and high carbon dioxide levels. She said it needed follow up, so we got sent home with a script for overnight oximetry.The little machine attached to his finger/toe, and recorded the information for the sleep doc to look at.

It was an unpleasant/scary 3 days. Of course it was a HOLIDAY in Utah. I hate Pioneer Day. But that is another post. Normal levels of oxygen that are good for you are anywhere from 100% to 92%. Anything under 92% is bad. Bad for your body, bad for your heart, bad for your brain. This range was his good level! ACK! The top number is the oxygen, bottom number his heart rate.

This low is scary, brain damaging low scary:

Mostly he hung out in the mid 80's. Bad numbers. Never knew I could hate numbers below 92 . But I do.So, finally on Tues, the sleep doc got the report back, and said, um, yeah, would be nice if he could do cpap, but we need to at least start him on oxygen. And along with the low oxygen levels, he is also having nightly episodes of bradycardia.His heart rate is dropping down into the low 40's. So she referred us to a cardiologist too. If you wish to insert a deep, overwhelmed sigh here, it would be appropriate.The visit with the cardiologist ended up being non eventful, thank you very much! Little Man does not have Pulmonary Hypertension, and the ekg and echo of his heart showed his heart had not sustained any damage from his low oxygen at night.

On Hiatus

2011-01-14T17:14:00.002-07:00

A quick update and my reason. My laptop died. I am incredibly sad and I feel like I lost my lifeline with the world. Rest in peace Bitty Bytes, you were a good friend!
I still have the use of the desktop, but it is very limiting in terms of my life, because I can't use my snuggle time with my boy as cyber time. So poof, there went my two hours of internet time I used to get. I am saving for a new one, and really, truly, I will be back to blogging, eventually.
Other news.
This Christmas rocked in a HUGE way. Pygmy Child, Brown Boy and Tigger joined us for Christmas. My sweet little grandson took one look at me, held out his arms to meet, and I held him, smiling and crying at the same time. I miss them more than I can say.
We have been having issues the last couple of years with my sons. Let me see how to explain it... well, Oldest Son wasn't speaking to Tank. Tank wasn't mad at Oldest Son, but they weren't speaking. JJ wasn't speaking to Oldest Son. Oldest Son was fine with JJ, but they weren't speaking either. ARGH! One of the upsides of my kids is they have always gotten along so well! It was a source of pride and joy to me that my children loved each other so much. Or did. Or something like that. But you know about pride and all that.
So, as I knew that all SIX of my kids and their various significant others and my six beautiful grand babies would be here too, I have been planning a family picture. My own personal Christmas miracle was my children all making up with each other and I got my picture! I don't have it back yet, but I will post it when I do. It was a beautiful Christmas, filled with so much love and laughter. Probably my favorite memories of it, is laying in my bed snuggling my boy, listening to the laughter filtering up the stairs as my children enjoyed each other's company. I do feel intensely blessed. Peace and Love, Christmas 2010! I got exactly what I prayed for, for Christmas, I hope you did too!
We LOVE living here, Little Man's school and after school program continue to be a huge blessing in our lives as they help us with his problems. I am working and loving it! Just part time, but it has been fun to get so much positive feedback.
Feel free to drop me an email, I am probably more reachable that way currently, I do check my email usually in the morning and evening. (Lakotajo2@msn.com)
I hope all of you are opening this new year with a sense of hope, and promise, knowing there are so many opportunities out there for you, to be all of who YOU are. MWAH to all of you.

Guilt and Other Feelings

2010-11-04T20:49:00.005-06:00

I admit it! I am a BAD blogger! I haven't blogged, haven't been reading anyone else's blogs. I promised myself I wouldn't blog again until I touched base with my bloggy friends. I lied. But I do have good intentions if those count for anything.
The year from Aug 2009- Aug 2010 was beyond difficult. People trying to die, (my mom, twice,the boy, once myself once) people dying, (Our beloved Bright Star) Little Man losing his mind resulting in what I am now calling the Summer of My Discontent and our decision to move in hopes of getting the services our son needs.
The school thing was very difficult at first. They put our Little Man in a special classroom at a REGULAR Jr. High. Disastrous doesn't begin to describe the violence and incredible escalation of behavior. I had advocated for him to go to a school for the more handicapped, but the district said it was "too restrictive" and they couldn't legally move him until he failed his current placement. As a mother it was so hard to watch my boy lose his mind and know the adults in his life who were supposed to protect him, were instead failing miserably.
After fights about his emotional and medical needs and him getting sent home every day at 11, the district agreed he needed a different placement.
Sort of rough at first, but then...
Just as I found it difficult to express how incredibly hard things were for our boy and our little family, I find it challenging to describe how things are now.
School: I went to Little Man's IEP this morning. I was told he is charming, he is adorable, he is so smart, he is so helpful, he is kind, he sticks up for and helps the other students. He is funny, he is so functional, he is clever,he is one of the smartest kids in school, he is amazing, we LOVE him, he is a favorite, he makes us laugh.
I laughed with delight through the whole meeting and kept thinking, "are they talking about my son?" yes they were. My heart was singing! I walked out of the meeting on clouds with a big smile on my face.
His after school/behavioral program: Since it is behavioral therapy, and they are working on challenging and changing his dysfunctional behaviors, they have seen more problem behaviors. BUT, in spite of that, they LOVE him. He is NOT their hardest kid. He is doing well there, and best of all, he is happy to go. He is gone a LOT, but it gives Bald Man and I some time together in the evening which we hold precious. AND, neither the school nor his after school program will give up and call us to come get him just because he is being difficult.
Our neighborhood: Nothing prepared me for the joy I would feel when the doorbell rang and there was a child at the door, "can Little Man play?" No one has ever done that before. This amazingly normal question brought me to tears. Our neighbors are AWESOME! One of the moms on our street has a job working with people with disabilities and she has some great skills in weaving Little Man into mesh of the kids on our street. Not only is she good at it, she doesn't hesitate to coach the other children in including our boy in their play.
July had brought me to a place of feeling we were out of options for helping our son, and I felt as though I was staring at the end of a long hallway, and now I was at a dead end. After knocking on every door available, we had no answers and no help. I sobbed and prayed. With our decision to move, I found I was NOT at the end of a long hallway, stepping off into an abyss, instead, I was at a corner. Turning the corner and looking down the hallway, I found open doors! More than one! I found hope, I found knots to add to the end of my rope, I found a guardrail circling the abyss.
Little Man is doing awesome! His great behavior is carrying out to our home and we have seen a huge difference in him. He is happier, less oppositional and less difficult in general.
Like a little plant struggling to grow in a hostile environment, our son was battling to survive. Bringing the plant into a hothouse, giving it warmth, proper nourishment and shelter, the little plant grows and flourishes.
Our son is not just surviving anymore, he is thriving and blooming!
I will say that I am just a bit sad I was not able to provide my son with the support and structure that he so desperately needed. I think my boy was being pushed to his absolute limits in his ability to cope, every single day. Now he is no longer being pushed so hard every day, he has the room to grow.
Moving here was the best thing we ever could have done for Little Man and our family in general. My heart is filled with tremendous gratitude today, and every day.
Oh, by the way, the boy is so stable I was able to find a part time job in a local portrait studio. I LOVE my job, love what I am learning and I am keenly aware this wouldn't have been possible if we hadn't moved and changed things.
Thank you for hanging in there and for ~~nagging~~ politely requesting more information. Now that we are settling in, I am hoping to find my blogging mojo again. I miss it! Mwah to all of you!

Introducing....

2010-09-02T14:38:00.004-06:00

The Tangled Family's newest addition!!!

He was born yesterday, to JJ, BB and Buttercup. (nope you aren't wrong if you are thinking Buttercup is a bit young to be a big sister, she turns 15 months in a few days!) He weighed 7lbs 13oz, 19 inches long. Mom is doing well, although very tired she says. I haven't gotten even a smidge enough time of snuggling yet. My cup overflowth with darling grandchildren, what can I say? I am blessed.

I need your help figuring out a blog name for him!

Popping In

2010-08-24T12:55:00.002-06:00

Only have a moment, no internet yet at the house, we are at the library. Our new library has HUNDREDS of kids dvd's to borrow. Being a smart and desperate mama, I brought his DVD player along with my laptop to the library. We are both plugged in and very happy.
Settling in, should have internet soon. Boy starts school soon and I can't wait for that. For my blog peeps in the area, lets go do lunch or breakfast to celebrate school starting!!! Whoot!
Little Man, has surprised me with how well he is tolerating the move. He is over all doing VERY well, and I am very, very, grateful. We are taking the move as a opportunity to change some things in his routine that have been needing to change. Like NOT having 200 toys in the bathtub in the morning. (I wish I was kidding, I am not). Now we say, 10, you can only have 10 and because it is a new bathtub, he took the rule change really well. Whew.
I am grateful, happy, and enjoying the new adventure of being some place I haven't been before. Mwah!

Too Busy to Breathe!

2010-08-18T08:53:00.002-06:00

We are all fine. Nothing major to report thank goodness! We are moving on Sat so I am packing like an insane person. Praying Little Man won't lose his sweet little mind over all the changes. No grandson yet, although BB continues to threaten to have the kid just about every day. He isn't due until Sept 6, so I am hoping he waits, because I am too busy already! I need some help thinking of a blog name for him, any suggestions?

Working on it

2010-08-03T16:07:00.000-06:00

Desiderata
by Max Ehrmann

Go placidly amid the noise and the haste,
and remember what peace there may be in silence.
As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly, and listen to others,
even to the dull and ignorant;
they too have their story.

Avoid loud and aggressive persons;
they are vexatious to the spirit.
If you compare yourself with others,
you may become vain or bitter,
for always there will be
greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.
Keep interested in your own career
however humble;
it is a real possession in the
changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you
to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.

Be yourself.
Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit
to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.

And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore, be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.
With all its sham,
drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

Mountain Monday

2010-07-12T21:18:00.005-06:00

First the fill in on the information, pictures to follow. So if you want to read the latest, it is next. If you only come for the pictures, then you can scroll down til you get there.
Little Man, Little Man. Tough times here at Casa De Tangled. Last Monday found me sobbing my heart out over everything that has gone on. My broken computer, my hurting heart, my lack of ability to cope with how difficult my son was being. We have no prospects of finding a program for the boy, well, maybe, and it is big maybe, one. I wondered what would happen. I wondered how long could I keep dealing with the level of difficulty and aggression we are at with our beloved boy.
My computer's dvd driver/reader is broken, but at least everything else works.
I was talking with Little Man's case manager, and I swear this just popped into my head while we were discussing our options. "if we lived in a more metropolitan area, would there be more service providers to choose from?" Surprised, she answered, well, yes, quite a few more. I called Bald Man and next thing you know, we are moving! Our lease is up here at the end of August, so we are leaving for a more populated area of Utah.
We have already found a program that seems to be the answer to a prayer for Little Man. We go interview them tomorrow. We are looking for a little house to rent, the boy really needs a yard to play in. We never meant to stay this apartment for so long. But at the same time, if we still owned our house, there is no way we could just pick up and leave like we are doing. Funny... I never thought I would be grateful we didn't own our house anymore, but I am.
I went from feeling totally helpless and trapped, to feeling like so many doors have been opened for us. Thank you so much for your prayers and good thoughts, I have no doubt they are contributing to our increased peace of mind.

Bad news: no summer program
Good news:His sat. respite person is picking up a couple of hours a day with Little Man so I can have a break.

Bad news: The days with the boy are LONG
Good news:his medication switch is finally working and the level of foulness of our home has gone down significantly.

Bad news: He has lost at least 10 pounds in the last 8 weeks, so we are back to having to tube feed him again at night.
Good news: He definitely has the extra weight to lose. He still has his tube and I am so grateful we can make up for what he isn't getting by eating. (I am struggling with not feeling crushed or that we have gone backward with his eating, this isn't an easy thing for me)
On to pictures! Summer is here, and it is hot and getting very dry.

Utah's summer snow, also known as cotton from the cottonwoods.

A thistle, even weeds can be beautiful.

I think this little bee is trying to do a headstand.

Mountains!

And finally, he is smiling! I missed his smiles while he was in his dark place.

Big adventures in store for our little family.

Working on Gratitude

2010-07-05T13:32:00.002-06:00

After a long cry last night, which I am sure I needed and some sleep, today was a bit better.
A friend of mine came over to give me a break with Little Man. She has training in working with kids with disabilities and aggression, so she was equipped to handle him, if not completely prepared for the level of violence he threw at her.
It was short, but meant the world to me. Really, truly an angel. Thank you Val!

My laptop is fixed! Some stuff had come loose in the fall to the floor and they were able to re seat it and it fired up just fine. There is some hard drive damage, but I won't know the full extent until I look at everything. But it works! Seriously, I stood there at the computer shop and thought, it is a miracle. Thank you God and the computer dude.

I have a call into his psychiatrist's office, waiting for a return call on that.

Danielle from An Eagles View asked if she could bring dinner tonight. While it isn't a necessary thing, we could scrounge something to eat, a sandwich etc. it means so much to have something cooked and yummy to eat. Thank you Danielle!

I am working hard on being grateful today. Thank you for your kind comments and prayers. They are appreciated and cherished.

Demoralized

2010-07-04T19:35:00.002-06:00

beaten down
discouraged
frustrated
dejected
crestfallen

Ya know? I am pretty strong, and generally upbeat in the face of a lot of crap. But not today.
I have been wanting/needing to blog, but haven't had a moment lately. Little Man got booted out of another summer program, we had a person working with him, but she quit with no notice on Monday. That means I have had him, 24/7 for almost a week.
Know what I have done this week?
chores-0
laundry-2 loads took me all day
meals cooked-0
anything else I wanted to do?-0
(except for Saturday, we did get respite, thank goodness, it is the one shining moment in a dump truck load of manure)
The boy is foul, foul, foul. Screaming, disobedient, defiant, ugly, name calling, violent. I have gotten punched in the face, been screamed at pretty much all day, every day.
We are working with his pyschiatrist, pediatrican, a therapist, a behavior therapist, case manager, and anyone else we could pull in to get some help with what is going on with our boy. Things are bad, very, very bad.
It has been a LONG, LONG day. I was already pretty fed up and not very happy, or patient.
Cherry on a crap sundae?
Bald Man just kicked my laptop off the bedside table. Laptop no longer works. I want to run away, I want to scream and kick and swear, I want to escape all of this. And it seems when things are the worst with the boy, when I really need a break, when I am having a really hard time holding it together, is when we have no help and at this point, little hope.
Things have been rough since Feb and seriously? I don't have it in me to be brave, or cheery or anything.
Send me some love notes, I really, really need them right now.

Father's Day

2010-06-20T11:09:00.003-06:00

(This picture was taken on the day Little Man was given to us)

I was blessed with an amazing parent. One who taught me how to use power tools, how to change the tires and oil in the car, how to be strong, even when I was scared, how to be unmoved in the face of force. My parent coached my softball team, drove me to play practice, and taught me to mow the yard. Took me camping, showed me how to burn off the mantles in the propane lamp, and start and put out fires.
I was the luckiest girl in the world, because my mom was the best "dad".
As I grew older and thought about marriage, I wanted the same kind of dad for my kids. I married a man who melts when he holds a baby, who sang endless rounds of "I've Been Working on the Railroad to colicy babies, took us all camping, and went to every single one of the kid's plays, concerts, wrestling matches, track meets, and scout things. He talks baby talk to our dog, he gives horsey rides to the grand babies, just as he did for our kids.
When our oldest got married, I told her that her fiance reminded me a great deal of her father, who everyone, including myself calls him a good man. My daughter told me she thought she was very lucky, because she thought I got the last one. Highest praises, well deserved.
I married a good man, who became a wonderful father, and has ripened into a beloved Pop Pop to his grand children.

Too Much To Say

2010-06-11T13:41:00.002-06:00

Too much to say and not enough time or good internet connection to say it.
I am breathing that baby in, every.single.day. All frog curled on my chest, breathing in the wonderment and awe that is new baby. Never get enough of it.
Got to go to the ocean, a WARM ocean. Wow. It filled my soul in a way I have a hard time expressing.
Taking LOTS of pictures that will have to wait for a better internet to be put up. It is LUSH here, besides the beautiful baby.
Little Man is doing really decent right now and I am soooo grateful.
Practicing being totally present so I don't waste a single moment not being HERE, where I am, right now. Gotta fill up, cause it is going to have to last until Christmas.
It is so dang hot and humid here, it is like getting hit in the face with a hot wet towel when you walk outside. I had no idea. none. do now.
My sweet girl is the best mommy ever. Tigger couldn't have picked a better mom. I am so proud of her I could bust. She is having a very tough time and dang, my girl is a WARRIOR!
Peace. Love. Sweet. Precious. Here.

Better

2010-06-09T11:05:00.002-06:00

Little Man is doing better than he was. I am less worried and so it is less difficult to be present here, where I am, right now.
I am filled with gratitude for the good people in my life. For my husband and his willingness to stick this out so I can stay here with my girl, for friends who pray and send good thoughts our way, for our respite providers who were so willing on short notice to make this all happen.
I love my boy, more than I can say, this has been SOOOO hard on me, but I am working on being zen about it and being present.
thank you. thank you.
Jo

Short

2010-06-08T10:46:00.002-06:00

My daughter and son in law's internet sucks. I have to keep this short and I don't have any pictures, cause they take too long to upload.
Things are wonderful and terrible.
I am loving being with my sweet girl and her precious boy, and watching him smile and coo just kills me every.single.time. She is happier with me here and that makes me happy.
The terrible: Little Man is having a VERY hard time with me gone and has been scary aggressive with his respite worker. I feel so torn about needing to be here and there at the same time.
For right now, Bald man says things are okay, and to stay, so I am working on being totally present, every minute with my beloved Pygmy Child and Tigger.
Prayers and good thoughts would be greatly appreciated.

Here

2010-06-05T17:26:00.002-06:00

I am here. Happily holding my Tigger. I will post pictures later. We were able scramble together some short term help with the assistance of JJ, while we continue to look for some help for the summer. STRESS.
But for now, Little Man is okay, Bald Man is okay, I am more than okay, as I drink in the newness and awesomeness of my new grandson.
Thank you for your support and love. It is so appreciated.

The Abyss

2010-06-04T08:03:00.003-06:00

Crazy week and it got crazier. I have been wanting to show off my pictures and stories from the Casual Bloggers Conference, but instead, I am crawling here to share my hurt.
It is a long story, but to keep it short, Little Man is in an after school program. It is a therapeutic program for people with disabilities. They also run the summer program he attended the last three summers.
We have heard nothing but how great he is doing, with an occasional off day. How much they love him, etc.
We got called yesterday to come pick him up early, he was losing it. As we interrupted our Buttercup's first birthday party to handle this, we were told he was no longer welcome in the program.
I was told that maybe we need to put him on more meds, since whatever he is on, isn't helping with his behaviors.
I was told that 3 parents had said that their children would not be going to the summer program if Little Man attended.
I was told that they had staff complaining and threatening to quit because of my boy.
Why all of a sudden? Why hadn't they talked to us? I can't believe it is happening, particularly on the brink of my leaving!
Last night I was angry, confused, hurt and ultimately just plain heartbroken.
I feel like I am standing on the edge of an abyss. Is this the beginning of the end? Is he going to become so violent and out of control that we can't take care of him? How am I supposed to deal with this?
First I scrambled to find something for him for while I am gone, so Bald Man can work, and then I cried and cried.
I woke up this morning, and the grief hit me first, then the realization of what we are facing.
I asked my husband if he was emotionally hungover and he said when he woke up, he wondered why he felt so sad. It feels like someone had died. We are mourning. Not bodily death, but death of hope and dreams.
I love this boy, more than I can tell you. He is my miracle child, he is my heart, and yet, the pain is lingering underneath a huge question mark for the future.

P.S. Legally we have 30 days where they have to take him. I don't know about you, but I can not send my vulnerable child, who can not defend himself, to where he might be mistreated. Not physically, but if they were to be unkind and impatient with him, it would be harmful to him. We have made some short terms arrangements, and his Waiver Case Manager is helping us look for something else.

Squeee!!!

2010-05-28T07:07:00.005-06:00

The Casual Blogger Conference is here! If you are there, please find me and say hi. What an awesome weekend. It is kind of pitiful, you would think that I was going to Paris for a week. I was trying to figure out the last time I really had a day for some fun, um... that was like AUGUST! So fun, here I come.
Wish me luck on the panels, I hope I don't make a fool of myself.
Are you going?

Rage Against the "Man"

2010-05-20T15:41:00.004-06:00

This morning, I am taking my daily medications. Which to my sorrow have multiplied beyond a vitamin and my anti depressant in the morning. I realized as I was swallowing down my pills, (with much gratitude every day. I might not like taking medication, but it is way better than being almost dead!) that my Bald Man and I are on the same hypertensive meds. (high blood pressure). I do not know why my high blood pressure was not a "silent killer" like my husband's, but mine was going to kill me very loudly.
After I swallowed my pills, I looked at him and said, "how did they diagnose your hbp?" He said that he had gone in once and they said it was high and they put him on medication right away.
Here is the list of my questions that followed:

They didn't make you come in over and over to "prove" you had hbp?
No
They didn't make you keep a log for two weeks of daily blood pressure to "prove" it wasn't white coat hypertension?
No
They didn't tell you it was in your head?
No
They didn't tell you to talk to a therapist about it, because you might be having panic attacks and didn't know it?
No
They didn't tell you that you have a stressful life and you need to reduce your stress?
No
They didn't tell you to go practice breathing and meditation for it?
No.

Well that is certainly what I was told! And now I am MAD! By the way, we see the same doctor. As for the stressful life, ahem, we have the same frick'n life!
A plate of misogyny with a side order of patriarchy. Blech.

Mountain Monday

2010-05-17T22:07:00.007-06:00

I am feeling so much better! We finally have my blood pressure under control and I feel pretty darn good.
I am leaving the beginning of June for Florida and my new grandson. I can hardly wait. It has been really tough on me to be so far away when my daughter needed me. I felt like a mama cat, with her baby stuck in a storm drain, meowing for help. I wanted to get to her but couldn't. I spent a lot of time praying.

I can't wait to kiss this face! Tigger!

Spring in Utah. It has been a cold and rainy/snowy Spring this year. But in spite of the weather, there continue to be signs that Spring is really here.

Baby sheepies!

Just to remind us Winter is not quite gone, snow, but pretty clouds!

You can see the green of Spring creeping up the mountain, pushing Winter away until next year.

Lilacs!

One of Ms. Tenacious' younger siblings...

The last soccer game of the Spring season

Beautiful granddaughters blooming!
Can you believe it? When I started this blog, I had one grandchild. Now I have five!

Thanks for hanging in there thru the paucity of posts. I am hoping I am back on my blogging horse!

And don't forget!

Hope to see you there!

No Mountain Monday

2010-05-03T20:25:00.004-06:00

Sorry peeps, I am just not up for it today.
I do have a new picture of Tigger though!

I really must brag about how proud I am of my daughter and son in law. Tigger was a tough little guy to get nursing, and I am so proud of his parents for hanging in there, calling in knowledgeable troops to help them and just for being so, well, I guess, tenacious! It can be a wonderful gift when the going gets tough. I couldn't ask for a more supportive daddy and husband for my daughter and grandson.

Blah, now onto to the not so great. As much I would love to not talk about it, my health continues to be a big issue, no matter how much I want to ignore it.
I have developed high blood pressure and a high heart rate, for what reason, no one knows. Now, the American Heart Association calls hypertension, "the silent killer"
They LIE! Lying liar mcliar pants! My high blood pressure is loud and noisy and not the least bit quiet. I am capable of telling where my blood pressure is, by how I am feeling. The higher it gets, the worse I feel. Tired is the big one. I also get really shaky. The higher it is, the shakier I get. To the point where I can't hold a book, sew, or even be on the computer. I HATE it. I was feeling so much better just a couple weeks ago and this set back has been tough on me emotionally. I keep saying, "I just want to feel better!"
One of the hardest things about this is I never know how I am going to feel, from day to day or even hour to hour. Some days I wake up feeling great, other days, like today, I just turn around after Little Man is gone to school and go back to bed.
I am learning to take advantage of when I am feeling good. There is one problem with this. Since I don't feel good all the time, or even half the time, I do not have enough time to do everything I want/should do. I have to plan my "good time" very carefully, giving myself enough room on each end of an activity to recover. I can push myself when I am not feeling really well, but I will pay for it, in a big way later. I am tired of being tired, tired of not feeling good. Tired of being sick, it feels like months and months of my life have been taken away from me. As, I guess they have.
I am overall okay, not depressed, but it is a struggle sometimes to maintain a positive outlook. For now, hope that I will feel better at some point keeps me going. Now and then a little voice says, "what if this is the new normal?", I can't bear to think that, so I put duct tape on that little voice's mouth.
My husband has been a hero through all this. He is patient with my inability to do things on some days and he is always asking me how I am feeling. I try to give him a heads up if I am feeling good when he leaves for work and later take a slide. I don't want him thinking dinner will be waiting, when I can barely get out of bed. He so far has been a saint and utterly patient with my physical weakness.
It is so weird, after so many years of being able to push myself through sleepless nights, being sick, whatever, to not be able to do it anymore. I am not enjoying this current part of my life, but at the same time, when I have things to do that I enjoy, like playing with my grand babies, I put my whole self into it, laughing and enjoying the moment. In spite of not feeling well all the time, one thing I realize is that the moments are all we have. A hug, a kiss, a tickle, laughter, each should be cherished in its fullness at the very moment it happens.
Slow down, before you get pushed down like moi, and really, really, enjoy the good moments as much as you can. Life AND health can be fleeting.

He's Here!

2010-05-01T09:15:00.003-06:00

My first grandson Tigger arrived yesterday morning. Pygmy Child was a warrior with a very long, difficult labor and I am so proud of her for not quitting. She got the home birth she wanted and a healthy baby boy. He weighs 7lbs, 7oz and is 19 1/2 inches long. He also had a 14 inch head! Now for the non midwifey types, that is a BIG head for a 7lb baby. It is more like a nine pound baby head. And Pygmy Child, in spite of her short stature (4ft7in) has her mama's more than adequate pelvis.
I cried some last night, feeling so left out with not being there, but got over my self pity pretty quickly. June will be here soon enough, with plenty of days to love on my Tigger and daughter.
I just want to tell everyone how proud I am of her, for being so brave, so stubborn, for believing in her body and the birthing process. I have no doubt whatsoever if she had had a hospital birth she would have had a c sec. (Which, when used as they are supposed to, as a life saving measure, are a blessing) In turn, it makes me so grateful that I was able to pass on my beliefs in childbirth and the wholeness of women to my daughters.
Our family has changed as we add a new one to our fold. We feel so blessed. Welcome home Tigger, I know the angels celebrated your birth too.

Mountain Monday

2010-04-26T22:01:00.005-06:00

If you wanted to go but found out the conference was sold out, you are in luck! There are 75 more tickets on sale, so run and get yourself one!
_______________________________________________________

Who knows? Maybe I am finding my blogging mojo again? It snowed last week a couple of inches and it is going to snow again on Weds, but we are not going to speak of that bit of ugliness. It is Spring, I insist, no matter what evidence there is to the contrary. There are far more signs of Spring than there are of lingering Winter, so pay the death throes of Winter no attention whatsoever.

There is Mr. Winter, saying "nanny, nanny" from the top of the mountains...

I have a thing about roads and landscapes. Something about them calls to my soul and I love them in every season.

I had starting taking a couple of adult ed photography classes in Feb. I, uh, never got to finish for some strange reason. So I took the last half of the classes recently. I enjoyed both of them, but the portrait class was my favorite. Here are a couple of my favorites from the class.

A fake "senior" portrait

A family picture.

Updates: Pygmy Child is still pregnant with Tigger, I remember vividly being overdue and my heart is with her at the end of her pregnancy. I continue to focus on going to be with her and my grandson in June, rather than the other. There is too much to be grateful for instead of mourning for what is lost.

My health. blah. and blech. After a lifetime of very low blood pressure, my blood pressure and heart rate have decided to take a sharp rise lately. I have been to the dr and the ER with no real answers. At this point, I just want to feel better. I was doing so much better a couple of weeks ago than I am now. My high blood pressure makes me tired and headachy. This Thursday I am getting fitted with a holter monitor to see if I am having any heart irregularities. Honestly, I just want to feel better and I have no idea what is going on, except I know when I don't feel well. BUT, I am still feeling WAY better than I was a couple of months ago, almost anything is an improvement from almost dead!
Thanks for dropping by, you know I love you all and I appreciate sticking with me through my lean season recently.

Check Me Out!

2010-04-23T17:29:00.003-06:00

Not only am I attending the Casual Bloggers Conference

I am speaking!
TWICE!

You may check out my bio and gulp! picture of me at this link: Casual Blogger Speakers
I will wait while you go look, scroll down to the "J's" for Jo of course.

I looked at that picture and my first thought was, "Holy heck, I look Chinese!"
Living my entire life being something besides Caucasian, and living most of my life outside of Utah, I have accepted the fact I don't look white and that I look like "something else". The guesses have included, Hispanic, Asian, and Hawaiian, unless I am home on the reservation my family is from, in which case, they get the tribe right and even my family! Most impressive.

You must now watch this hilarious commercial. I insist. It is important.

Guess what? I have my new identity for living in Utah! I am racially ambiguous! Finally, a place for me. I am so happy!
And you know what else? I do have beautiful hair!

Mountain Monday

2010-04-19T22:38:00.006-06:00

In case you hadn't heard, this is what Utah looked like 13 days ago, on April 6th. We got 8 inches of snow that day, much to all our horror.

It looks like that was Mother Natures last attempt to keep winter around, thank goodness!

Here is what my corner of the world looks like today.

It is hard to see unless you click on the picture and see it larger. But the green of Spring is creeping up the flanks of the mountains, chasing away Winter, while the rest of us cheer in delight.

Here the new leaves on the wild roses begin to unfold, while the winter's rose hips wither away.

I am not sure if you can tell, but Ms. Tenacious is gone. I like to think she decided that it was time to move on to another part of life, death is just a part of it, and letting go, a birth, not a tragedy.

We must be willing to let go of the life we have planned, so as to accept the life that is waiting for us.” – Joseph Campbell

Another sign that Spring is here, baby animals!

I am not sure what these thistles are really, but we call them porcupine eggs.

Soccer season is here! There are few things I love more than watching my Little Man play soccer. He really enjoys it and I love cheering for him and the rest of his team.

Thank you for letting me share my corner of the world with you. Seeing Spring through your eyes makes it all brand new.

Sabbath Musings

2010-04-11T15:54:00.004-06:00

Very slowly getting back into my "old" busy life. It has been a strange experience. I told someone recently, that was like my life was a table. Filled from edge to edge with so many things. Some things I LOVE to do, like being with my grand babies and making Sunday dinner for my family. Some of the things that fill my table aren't as enjoyable, like taking Little Man in for blood draws and housework. But my table was full. One day a giant came along, swung their arm out and swiped everything off the table. Suddenly it was empty! There was nothing to do, no where to go. My days were "filled" with naps, dr appts for myself and nothing else. Bizarre to say the least.
As I am feeling better and better, I add things in, going to the store, doing laundry, Little Man's cares, housework, and of course, spending time with my precious grand daughters. I have an occasional off day. Friday and yesterday I was tired and headachy. So I took it easy. But I feel so very much better than I did 6 weeks ago.
So I am guessing the majority of you know that my precious Pygmy Child is due with my grandson who will be called Tigger on the blog, in April.

As every mom does, when my oldest was born, I dreamed of all of her firsts, proms, graduations, weddings and of course, babies.
As a retired midwife, childbirth is a big deal in my little world. I have had the honor to attend hundreds of women and the fathers of babies as they welcomed a precious new soul into their family. I have never gotten over the wonder and the miracle of the moment that new baby enters into this world. Everything changes. Childbirth changes you. And while I know that not every woman will receive the gift of giving birth themselves, (they have other miracles in store for them) that does not make the wonderment of childbirth any less precious or wonderful.
Of course I was going to attend my oldest daughter's childbirth! So many asked me if I was the midwife, but I said no. I don't want to midwife my grand babies. When I am in baby catcher mode, I have to stay in my higher functioning mind, and my thoughts are not generally about the miracle, but more along the lines..."is she bleeding too much? What is the baby's APGAR? Is the placenta ready? How do the baby's lungs sound?" Only as a helper, would I be able to fully enjoy supporting my daughter and her husband in the birthing process and then to give myself total permission to immerse myself in the wonder of my new grandson.
I have known for a while, but I haven't been able to bring myself to share my bad news with the world in general, because it hurt so much. My doctor told me I would not be healthy enough to travel until May or June. AFTER my grandson is due. I cried a thousand tears over it. It broke my heart. I waited to cry until after I told my daughter the bad news, and I made her promise not to cry.
I woke up the next morning, so sad and heavy of heart, to this email from her....

Mom, please don't be sad. I know you really wanted to come and of course I wanted you here too but I cannot feel regret after almost losing you. Remember you have already given me all the tools I need to bring Tigger into this world. Through your example I've learned to trust my body, believe in my power to give birth, and rely on my maternal instincts. I have recieved these gifts at your side over the years and although you will not be with physically, your essence, your love and encouragment are already a part of me. Thank you for teaching me and showing me this path less traveled. I know the Lord's hand is in this. I am not disappointed with the way things are going. I know He is guiding our paths to give us each exactly what we need. The scripture Proverbs 3:5-6 comes to mind: Trust in the Lord with all thine bheart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
I love you mom. I am so grateful you are healing and that I will see you sooner rather than later. Love, Pygmy Child & Tigger.

Precious words, what mom would not feel lifted when they received a letter like that from her daughter? Balm for my hurting heart.
I read them again and again, so I can be comforted and know I am with her, even though I am far away in a physical sense. No distance in the universe could keep us apart, our love binds us. I am blessed.
This journey has been far from easy, but I am learning so much and every day, I am grateful I am still here, and getting better.

Happy Birthday

2010-04-04T09:52:00.002-06:00

to me!
Sharing my birthday with Easter this year leaves me keenly aware of how very blessed I am to celebrate today. With the promise of spring and eternal life, I am just so grateful to still be on the planet. All my grand babies are coming over tonight for my birthday, who could ask for a better present?

Can You Believe It?

2010-03-29T21:41:00.007-06:00

A Mountain Monday post!
Pictures first, then I will tell you what is going on.

I was already writing an obituary in my head for Ms. Tenacious. I wasn't expecting to see her again, after the last three months or so. But guess what? She is still hanging in there. Wow. What spirit she has.

Spring is here in fits and starts as is usual for a Utah spring. There is still a lot of snow on the mountains.

I love the contrast of the snow and the dark rocks and trees.

If you look close enough, you can find a promise of the Spring to come, here and there.

Junebug, can you believe she will be THREE in June?

Sweet Squid, she has the most beautiful eyes.

All the girlies love their Pop-Pop!

Buttercup will be 10 months old this next week. Her eyes are still blue, much to our delight. Her mommy, BB, spiked her hair just for me!

The Pea. Remember the unadulterated joy of childhood? She is four and half and just a hoot. She announced to her mommy and me that she will be attending "killer garden" in the fall! We laughed, she got offended.

My own personal spring has arrived. Last week, it was the strangest thing. I have been slowly getting better, but was still very tired, very brain fuzzy, (which I hate)lots of headaches, and in general just feeling not great. I was taken off my daytime O2 on the 18th. I am guessing a lot of the yuckiness was coming from trying to adjust to being on blood thinners since other folks complain about the same things. But on Sat the 20th, I woke up and felt good! Brain fuzz gone, energy up, I felt so good it was weird! Every day since then has been pretty darn wonderful. I just feel better. I guess my body adjusted. Whatever, it is great to feel better.
Being sick takes a lot of energy. I had no energy to blog, (in case you hadn't noticed) not enough energy to have my grandbabies by myself, I wasn't even reading much. I didn't even THINK about my camera, much less pick it up. It has been months since I touched it. I knew I was starting to recover when I began to think about my camera again. Now, I have enough energy to be with the grandbabies AND take pictures. It is wonderful.

Do not watch the video without a generous slathering of Cute screen on, because the cuteness is at lethal levels!

I have been hitting the gym in our apartments. Now don't get too excited, I am using the gym because I can keep an eye on my heartrate there, whereas, if I am out walking, I can't. I don't dare stress my heart. I picked up some of my records from the hospital and I was horrified at some of labs and tests. Besides being horribly anemic, I found out I was in moderate heart failure the day I went to the ER. My BNP was 621! I am actually glad we didn't know then, being told I might die was plenty to handle at the time.
I am up to 30 minutes on the treadmill and as long as I keep my heart rate in the mid 130's, I get a workout, but I don't overdo it. The first day I did it, I pushed myself too far and almost passed out. But I can be taught, I won't do that again!

I am praying the good days continue, I love feeling better, and it makes Spring that much more precious to me this year. As if the whole world is coming alive, just for me. Thank you for all your kindness, your emails,visits, phone calls, prayers, meals, flowers, cards, good thoughts and love. If you meant to make me feel loved and cherished, you did a good job!

Sabbath Musings

2010-03-07T21:09:00.003-07:00

On Death and Dying...

But before I get to that, I am alive and doing well. My doctor said I am recovering quickly, considering how bad off I was. I am still on oxygen, but able to do more, walking quicker, and Bald Man is happy that I am helping with Little Man again. I am back to being the designated butt wiper, much to Little Man and Bald Man's delight, and my un-delight.
I get out a few times a week, mostly for dr appts, and sometimes to the store. I stick my O2 tank in that little cart and ride around. That pretty much tires me out and I come home and take a nap. I haven't ever really been this sick before, so it is a new experience, and boy do I have to be mindful of my physical self. I want to stretch myself every day, but not go so far that I am debilitated. It is a harder thing to balance than you would imagine. For the most part I feel fine, until I don't. But I am working on it.

So, back to the serious stuff.
In the ER, when they told me that this might actually kill me, I would be lying if I didn't say I was scared. I was SCARED.
Our beliefs about death come from many different places. Our family's beliefs, our religion, and our culture. The three things that have shaped my beliefs about death are being raised a Catholic, being Lakota, and being LDS (Mormon). All three of these belief systems believe in life after death, and for the Lakota, and the LDS, a circular belief of time, of always being and always been.
It is interesting to me, to note what went through my mind, as I contemplated my exit from this life. There were no regrets, nothing I felt that I needed to do, or anything that was undone. I felt at peace with my relationship with my husband, and an assurance that we were NOT done, and our relationship would continue on into forever.
I would have guessed, if you had asked me, I would have some serious misgivings about leaving my Little Man, who is so dependent on me. But you know what? I didn't! I felt in the deepest part of myself, I knew he would be okay, more okay than most. That was a big surprise.
What I felt most of all, is I wasn't done. I wasn't done loving my family. Was not done holding my grandbabies, laughing and loving them. That was all, just a sense that I couldn't leave before my grandson was born in April, before I got to hold him. No regrets, no wishing I had done more. I just wanted more of what I do, love my family. That was really reassuring, to know I really am at peace with my life and my choices. Of all the things I have done, or dreamed of doing, when it came down to the very essence of life, all that mattered was the love.
I knew I would see everyone I loved again, and I was at peace with that.

The first night, (I didn't know this until just two days ago, I was in the cardiac ICU. Ahem, kind of glad I didn't know!)in the hospital, I had a tremendous experience. At the time, I didn't understand completely what was going on, but looking back, I realize it was a near death experience, I was not completely in this world, but not in the next either. Straddling life and death as it were.
While I lay there in the bed, in the dark, I was very far away from my physical experience. I wasn't in any pain, and I really couldn't feel all that much.
What I did feel was incredible. I was at peace. Complete peace. I felt cradled and held. I could actually FEEL the prayers and good thoughts upholding me. It was transcendent. To feel wrapped in love and peace. I don't even know if I can explain it, because there was no mind chatter, no negative thoughts, no fear, just a sense of incredible love and peace. I hope I never forget how it felt, because it is something I want to hold close to my heart for the rest of my life.
I was awake most of the night, and as the night progressed, I become more and more aware of my physical self. By morning, I was very firmly back in my body, I was completely sick and miserable. The day that followed was really awful, I was in pain, and I was very tired, and I was really, really, really sick. Too sick to read or watch TV or do anything except lay there. I was very disappointed at the loss of the peace and love, I guess some part of me was expecting that experience to last. Sadly, it didn't. But because of the misery, it points out how very incredible the night before was. I am grateful. Love, love is everything. Go hug the people you love and tell them.

Stripped

2010-02-18T20:14:00.002-07:00

I am a baby. Not the wah-wah whiny kind, (although I have my moments, ask my long suffering Bald Man!)
I am nothing but the most essential me. I eat, I breathe, I am my most primordial self, physically, mentally, emotionally, spiritually.
I can not care for myself physically , I am dependent and needy. Without extra care, I would not survive. Like any baby, right here, right now is all that matters. I manage what is in front of me, I have no extra energy for worry about tomorrow, or yesterday. Present.
I reach, to stretch, to walk just a few more steps today than I did yesterday. Whether I succeed or not, there is no negative self talk, now, just is. Success is in the doing. Be
Breathing is primal, when every breath I took for more than a week was fought for, I can not take my air for granted now. I am aware, multiple times a day of the air moving through my nose, down my throat, expanding into my lungs. I can feel it, whether deep or shallow. Each one, precious.
I am in love with my oxygen, what relief, what sweet peace it brings to breathe and to have breath. And when I have to work at it, how careful I am, to draw each one in, purposefully, with intent, to give to myself what I crave. Air.
Emotionally, I am laid bare. I have no extra energy to be embarrassed about my vulnerability. Normally I would rather die than cry in front of someone, as if my soul were naked. But now? If I feel like crying, I do, even if it exposes the core of me.
Spiritually, I am deeply aware of God's grace. My every breath is grace. Each day a gift.
I am grateful beyond words for the kindness and love shown to me. I am cherished, cradled, carried.
I accept, I love, I breathe. I am just, just me.

There is no place like home

2010-02-17T14:42:00.003-07:00

Blogging from the couch. I am hooked up to one of these:O2 concentrator so I am breathing easy. Right now I am gathering up my courage to go take a shower. It just really kind of flattens me, so I have to be prepared.
On the road to recovery. Considering how I felt last week and how very dang close I came to exiting this existence, what can I be anything but grateful?
Everyone has been so very kind. Flowers and visits and chocolate and phone calls and get well cards and dinners. If I ever wondered if I am loved, I can never wonder again. I have been cradled in prayers, love and caring. While the rest of this hasn't been much fun, that part, that part is most precious. Thank you.

Still Here

2010-02-16T18:10:00.002-07:00

They kept me for another day. My iron was very low, so they gave me IV iron in hopes that it will help me breathe, which I am sure it will. Most likely I will go home tomorrow. My liver definitely sent up the white flag and has stopped producing the clotting factors like a good little liver. I am much closer to being as thin blooded as they want. I have had some ups and downs, but as I sit right now, I am feeling better than I did yesterday. After a mega throwing up episode, I have a chance to be very grateful for Zofran. I haven't ever had it before, but let me tell you, it is a wonderful thing when you are sick to your stomach.
Still blogging from bed, Jo

Home?

2010-02-15T21:31:00.002-07:00

They are saying they are going to send me home tomorrow. While I am far from well, I am on the road to recovery. I will be going home on oxygen and very lucky to just be alive. I also have to give myself shots in my stomach with Lovenox. I am sure some of you are shuddering at the thought, and I guess I could let you think I was super amazing and totally stoic. But here is the truth. If you give the shot into a stretch mark, you can't feel it at all. Nada. Since Tank was 11 pounds, I have no dearth of stretch marks, which means, painless. So, there, I told you my secret. Who knew that someday I would be very grateful for my stretch marks? I never hated them, they just were. But now, they are a blessing. Seriously.
I guess my natural stubbornness extends even to my innards. They have me on blood thinners so that I will stop making clots and allow all the ones in my lungs, (large and small) to be dissolved. Well, my liver, which is the part that makes the blood clotting factors has absolutely refused to move! My INR has remained very low, and they have been giving more and more warfarin to thin my blood. I guess my liver finally threw up a white flag today. Even though it is still low, it finally moved, which made my doctor happy. AND made him say that perhaps I can go home tomorrow.
I am a little apprehensive since Little Man's care continues to be beyond my ability, and he really wears me out. But he misses his mama most dreadfully. He keeps telling me I need to come home, and read him a story and snuggle him. Breaks my heart.
They made me take a walk tonight to assess my oxygen needs, I think I scared my poor little aide. He looks like he is 14, and when I was coughing and gasping for breath, he was way concerned. I made it back to the bed without collapsing, so I won that round. Right now, if I am in bed, and I am not moving, I can keep my oxygen saturations up by myself without any help. I can not take a step, or even roll over in bed without gasping for air, so oxygen it is. Don't think I am complaining, I am NOT. After struggling for more than a week to breathe, there is nothing I want more, than to be able to breathe without working so hard at it.
And really, I keep being told I am very, very lucky to be alive, so I am just grateful for every breath.

Games People Play

2010-02-13T21:07:00.002-07:00

Games you can play in the hospital. Pea was here visiting today, (She misses her Bam-maw so very badly) and hid behind the curtain around the door and played hide and seek.
A great game if you are four or under.
Now if you are twenty and a boy, the games get a bit more complicated. You take the thingy you put on your finger to see how your oxygen saturation is? You take it, put it on your own finger, and hold your breath as long as you can. Then you watch the numbers on the monitor come down.
This game can be enlivened if the nurse happens to notice and come running in when the alarm bells start ringing. JJ was very proud, his best score was 86! (100 is what most people "sat" at)
Amazing how life can change suddenly. Right now, I have two things that I long for, live for, beg for, cry for. Breathing and sleep.
I love my oxygen, how wonderful it is to breathe and to feel the breath in me, and to not fight for my air. I love it. I am aware, I am grateful.
Last night I finally begged the dr to give me something better to help me sleep. I think I am in love with Ambien. Last night after I took it and I started to fall asleep, all I could feel was just joy that I was actually going to sleep! And I felt so much better when I woke up this morning. My spirits and body were renewed by some sleep. Today is the first time in weeks that I can say I actually feel like I am beginning to recover. And for now, that is enough.

Blogging From Bed

2010-02-12T08:41:00.002-07:00

Hidey Ho my cyber neighbors. These last few weeks have been tough and it looks like it is far from over. I am currently an unwilling inmate in the hospital. I caught a cold a couple of weeks ago and I just couldn't shake it, it just got harder and harder to breathe. Yesterday, I finally alarmed a doctor enough to not just send me home, and I have multiple pulmonary emboli in my lungs. Go ask Dr google if you need more info, I am too tired to type much. I will be here for a few days at least. I am on blood thinners to help keep any more clots from forming and to allow my body to absorb these. If you are on Facebook, you can friend me at Jo In Utah.
I am so sad, I feel like I lost my 4.0 GPA. I have taken my good health for granted my whole life, and I have never been in the hospital for being sick, or ever had a surgery. Now I can't say, healthy as a horse anymore! Betrayed!
There have been so many kind calls, Flowers from my beloved Cupcake! prayers, I am undone by the love and caring. I feel so cradled in love, and I am doing my best to just get better. Love you all.
Jo

A Look Back on 2009

2010-01-01T20:00:00.022-07:00

When I think back on the last year, I find my blog to be, (surprise!) a reflection in my life. Good times and bad, smiles and tears. Come along as I mark the year with some of my favorite posts from 2009.

Jan 09 finds me enjoying the delights of my DSLR with Mountain Monday posts.

The biggest thing that happened in January was our reconnection with Little Man's birth family.

These two posts probably say the most about the whole thing: That Quick and Wow!

While we haven't seen Big Sister or Little Man's Unci (Grandmother) again, we continue to visit Little Sister as much as we can.

Feb 09 found me in tears because of YOUR generosity. GRATITUDE! The outpouring of clothes, both new and gently used, toys, books and most of all the love, the immense amount of love I found, had me melting into puddles. Because of the sweet giving nature of my readers, Little Sister has clothes that are season appropriate AND nice! Thank you once again. For caring. Never forget, you made the difference in someone's life. Mwah!
I also had fun needle felting

And went to Kristina's blogger lunch, wow, talk about laughter and fun! I even got to wear the (in)famous snuggie!

March was filled with whining about whether or not spring was coming and some of my favorite pictures I have ever taken!
The eagles!

A single snowflake!

Swans!

I feel so blessed to be able to capture the beauty that is all around me and share it with with you.

April of 09 opened with my 48th birthday and a Happy Birthday post to me

I was such a cute little squirt, huh?

I continued to mark the journey of Ms. Tenacious, the oak leaf.

I told a funny story about my mom illustrated by my illustrious self!

Pygmy Child came to visit for 11 days and the boy started soccer and loved it much to all our delight! I became a soccer mom and I am so proud of it!

May 2009, lots more pictures of cute granddaughters, flowers, spring and soccer! We also announced the due date of our Buttercup!

June brought not just flowers, but our sweet little Buttercup!

It is kind of odd to look at the pictures and realize how much I didn't know this sweet girl. She is just the sweetest baby ever and I can not think of her without smiling.
We took a trip out the rez for a family reunion and I got in touch with my native roots.
The best part of the trip was spending time with my family. Sister Shutterbug, Cousin Turtle Woman, and most of all, our precious Bright Star.

I knew it would be likely the last time I would get to see her, and I did my best to build up the memories to carry me through the years without her. My best memory of the her on that trip was watching the lightening storm with her over the prairie.
Keep shining Bright Star, keep shining.

July found us very busy with swimming and enjoying summer activities. I noticed July is when my I lost my blogging Mojo. Not only was I not post like I was before, I wasn't reading and commenting like I had either. I have still to find it. I am hoping it won't be much longer!
But in spite of the leanness of posting, the cuteness continues to be into the danger zone!

Amber from Soggy Cheerios gave me a chance to feel like a real photographer taking pics of her beautiful girls.

In August I was asked to do a guest post at Mormon Mommy Blogs I poured my heart out and in return, I received so much love and support.

We also announced the upcoming arrival in April of our newest grandchild!

September was when things started to go downhill for me. Little did I know! Soccer started again, to my delight! It is so hard for me to explain why I love watching Little Man play soccer, but suffice it to say, I plan pretty much everything around his soccer days!

Cute granddaughters are sprinkled here and there and I am so grateful for their smiles and laughter.
My mom was very ill at the end of Sept and we were all scared and worried.

October started out nicely with me being able to take a photography field trip.
Good thing, cause the rest of October was memorable only because it was so horrid.
Little Man took an extended stay at Club Med for almost a week due to complications from Swine Flu.
We got home from that and our precious Bright Star exited this life for the next one.
Even as I am writing this, my heart is just squeezed with missing her.
November found the Tangled peeps traveling the country! We went to Cali for Bright Star's funeral and even though I am a sucky blogger and didn't mention it, we also made a very hasty trip out South Dakota for Thanksgiving! It was wonderful to see my mom and to see how well she is recovering. I had a chance to love on my sweet tajokas (grandchildren) and to fill my soul with the goodness of being home. I am so glad I didn't sign up for nablopomo this year. The previous two years I did and I was traveling then too! I learned this year.
December is easy since I only posted once!
My favorite picture ever!

To fill you in on our December, Bald Man made doll houses for the granddaughters, I made the beds and couches!

I made all the kids their Christmas pjs.

This isn't a good picture for anything, except to show off the matching pajamas!

Our Christmas was lean on money and rich in memories and fun. We made cookies, we laughed, made new Christmas ornaments and found out that we are having a grandSON in April. Wow, I was thinking we didn't know how to make boys, but I was wrong.

It was a year of ups,downs, tears and laughter. I don't regret a moment of the love I gave and received through the year. My strength was tested in the Fall, but with the Lord's help, I made it through, intact, I think....
I am not much of one for New Year's resolutions. But here they are: I will resolve to love deeply, to laugh uproariously, to sleep when I can, scream when I have to and pray when I need to. If you are along for the ride, it makes it all the sweeter. Praying the New Year finds you happy, healthy and filled with love.

Christmas Chaos!

2009-12-12T22:19:00.003-07:00

Do you folks remember last Christmas at Casa Del Tangled?

Things have NOT improved!

I bought the girls the matching dresses in all FOUR sizes in October. I had their bows custom made at Abby's Bowtique. If I were wealthy, I would have had a really good photographer take their picture. But on my budget this year, Target was it. For some reason I thought the girls would behave better for someone else. I was wrong!
But! I LOVE, love, love, love this picture. I ordered a big one to put on the wall. Hope this picture gives you a merry chuckle and puts you in the Christmas mood!

This could become a Tangled Tradition. We will see what happens next Christmas!

Mountain Monday

2009-11-23T21:38:00.007-07:00

Holy Heck! In case you haven't noticed, the last few months have been kinda nuts around here. Do you know how wonderful it is to have NO ONE in the hospital, needing surgery, dying or any other type of anything? I am breathing again. I am reading blogs and slowly catching up on commenting. Guess what? I am actually posting a REAL Mountain Monday, on Monday! Wooohooo!
I must say I am rather short on sleep though. This weekend has been bad for Little Man and his sleep. Friday night and Saturday night he threw up all his nighttime meds. So, no sleep until 2. Yesterday night, he didn't throw up, but he still didn't go to sleep until 2. I turned around this morning after he left for school and went back to bed. The only problem with that is that I end up with a very short day. The sun was going down as I was snapping pics, so I didn't get a bunch, but hey, I only need a few, right? Tonight, the boy was asleep by 8! Yippee!
Now on the pictures!

Check it out! Ms. Tenacious continues to cling. It has been a year now.

Ms. Tenacious has either been a bad influence or an inspiration to some of her fellow leaves. Here is one of this years who decide to hang in there too. This one is not all rolled up like our friend.

And here are a whole bunch of other leaves who are hanging in there too! They make a nice backdrop for the mountains.

Snowy rose hips.

Do have any idea how hard it is to get all four girls in a picture? This should give you an idea. Lousy picture, but it was the BEST one.

I have a goal of getting each of the grandbabies with a good picture of them asleep.

Buttercup doing a preview of the girls Christmas dresses and their custom made bows!

I have more pictures because I got to go to lunch TWICE with some awesome ladies, but I am too tired now to try and put them up. I am just so grateful to be finding my mojo again.

"Mountain" Monday

2009-11-16T22:28:00.005-07:00

It is Monday. I do live in the Mountains. That will have to do for the time being. Sorry to be sooo out of loop lately in terms of both posting and reading. I was feeling bad about it the other day and I asked one of my friends if they thought I was being very whiny or if things really have been tough for our little family. I was reassured to hear, no, things have been tough, and you aren't whiny. If they lied, God bless them!
Saturday was the first time in many weeks that I didn't feel the weight of the world pressing on my shoulders and I was very grateful.
So, today, being Monday and all that, I will share with you the pictures I took while we were in California for Bright Star's services. I miss her horribly, but I was grateful we could go, and share in the celebration of this remarkable young woman's life. She was an inspiration to many and her light will continue to shine, well, I guess, forever!
The services were the essence of bitter-sweet. So terrible to say goodbye, so wonderful to share as family and friends in our love for her. I got to see family I hadn't seen in a very long time and it was such a blessing to be there. Mostly, I was so grateful to know I will see Bright Star again. Love is forever.

This is my niece, and her precious girl, Miss J. Great Niece to you, granddaughter to me. Isn't she delicious? I could have eaten her with a spoon. She was so much fun!

Bald Man and I took a trip up to Telegraph Hill to see the wild parrots

My favorite place to be in the whole world is the beach and being near the ocean. Looks like the boy took after his mom. This picture was taken right before he went out a bit too far, (in spite of our shouting at him to come back) He got rolled good by a wave and was pretty pissed off at the ocean for a while.

This picture is a close up, cause this little jellyfish was tiny. I thought it was beautiful and it was still alive after I put it in some water. I know a lot about jellyfish from watching Finding Nemo and I knew it couldn't sting me if I picked it up by its bell. Little Man and I caught three of them and put them in a jar of seawater. They lived for a day, it was awesome to watch them swimming around!

Here is a gift for you. Just enjoy the sound and sight of the waves and take a deep breath or two, you will feel better, I promise!

I even got a chance to meet with Jami from Superfluous Miscellany for lunch! Dang, she and I talked for hours and never ran out of stuff to say. Thank you Jami, I had a GREAT time! Plus she had some clothes for Baby Sister. Jami is even better in real life than she is on her blog and that is saying something!

A long drive home and we are back in Utah. I am hoping to find my blogging mojo again soon, both the writing and the reading there of! Thanks for stopping by and for all your kind comments in regards to Bright Star's death.

Bright Star

2009-10-30T08:57:00.002-06:00

Physics was never my strong point,
String theories and relativity confused my brain
Looking into the sky at night my heart understood
ideas beyond my mind's ability to grasp
Somehow, gazing at the Milky Way in the darkness
Helps the universe make sense in my soul
Perhaps the light started a million years ago
just now, reaching my eyes.
But what I KNOW, is here, today, in this moment
The light has reached my heart.
Bright Star has taken her place in the heavens,
Shine me home, when my time has come.

I Didn't Know

2009-10-18T16:58:00.003-06:00

I didn't know that children with neurological problems are more likely to develop complications from swine flu. If I had known, if someone had told me, I would have gotten him Tamiflu when he first developed a fever. But in my ignorance, thought, he will be fine, kids get the flu all the time, it isn't a big deal. After almost a week in the hospital with the boy, I am not saying that anymore.

USA Today, Swine Flu

Please check out the link, and if you have a family member who has any kind of neurological or muscular problems, please, please, don't wait.

WE ARE HOME! Little Man spent the whole night last night off of O2. He is back to his regular self and I am so happy to see him smiling and laughing again. There isn't any thing sweeter than being home when you have trapped someplace you hate. I have a feeling if I had been at a Sandals Resort for the same amount of time, home wouldn't seem quite as wonderful. But I was't at Sandals, I was at Club Med and I am over the moon to be home. Already got a nap.

Don't Cross Me

2009-10-17T07:00:00.004-06:00

When I am as tired as I was yesterday, it is a BAD idea to cross me. Little Man was asking for someone to come play video games with him, so I asked if someone could. I was informed that due to H1N1 they had to change the rules and no one on "purple precautions" (don't ask me, I don't know!) could have the volunteers come in. Then I said, well let's get a tech to come in and play with him. I was informed they were all too busy to do that.
I got pissed! My little guy has been locked in a room for almost a week and the ONE thing he has asked for, they said no. As far as I am concerned, if a child has a request, the answer is never NO, it is, "well that won't work, but let's find something that will." I just got a straight up no. It was their bad luck that Little Man's doc happened to show up just about then. He asked me how I was, and I told him angry and he asked why. What made me really angry is that Child Life hadn't been by, not ONCE in five days. Not even for an initial assessment. The doc got mad and I am sure he gave Child Life an earful. There are policies for just about everything there and I know that ignoring a child for five days isn't one of them, so they were caught with their pants down and feeling dumb.
Pretty soon child life shows up and very nicely played video games with my boy for 45 minutes.
Bad luck on their part, to tell my boy no for the one thing he has really asked for and to do it on a day when I had gotten about 2 hrs of sleep. If they had done their job, this wouldn't have been a big deal, but they hadn't and I ended up crying angry, angry tears.
I came home last night while my Knight in Shining Armor (he says the only thing shiny about him is his head!) took up the post. Little Man was already back on oxygen, so... I have NO idea when we are coming home. Little Man is doing so much better all around though, I can tell he is recovering. I got him to smile and actually laugh yesterday by being very silly and he loved it. It did my heart so much good to see his sweet smile. He is drinking enough on his own now and doesn't need an IV anymore. He is playing more, talking more, being more reasonable. Even though I am so sad to still be stuck there, I am taking all the positive signs of recovery and chalking each one as being one step closer to being home.
I am wildly impressed with my own cleverness today. Last night, I was calling our Sat respite person to cancel when a thought occurred. Would said respite person be interested in coming and playing video games with the boy while Bald Man and I got a couple of hours away? The answer, YES! And my response? Whoo hooo! So that is plan. I got to sleep in my own bed. I slept like a log last night and woke up feeling ever so much better. And now, after posting, a shower, breakfast and back to Sick Kids R Us by the big stinky lake. Then, some time with my honey. Nice to have some positive things tucked in around the not so great stuff.
Much to everyone's amazement, Bright Star continues to cling to life with humor and strength. The plan is to have her come home on Monday so she can be home to die as she wishes.
Thank you for your kind thoughts, prayers and words. They are coveted and treasured for the gems they are in my life right now. Mwah to all of you!

Spoke Too Soon

2009-10-16T10:24:00.002-06:00

Little Man did great yesterday, he needed some oxygen when he took a nap, but otherwise was doing great. Bald Man came up after work so I could get a mental health break. I visited with my friend around the corner and her little girl and then I went and got sushi. YUM! It was soooo nice.
I got back to find Little Man back on some serious oxygen and needing an IV again. I knew that he wasn't drinking as much as he usually does, and I wasn't worried, but hoping he was doing fine. He wasn't and because of the Lithium he is on, he can not get dehydrated, so he got a new IV.
And then? He freak'n stayed up til four in the morning! I am so tired. I am praying he takes a nap soon, cause I am tired in body and tired of his endless demands. He is on some really serious sleep meds. I have been told that an adult would probably sleep for 3 days on them. Well now the nurses KNOW why he is on so many. We usually get anywhere from 2-5 nights a month of him not sleeping like this. Used to be worse, so we take what we can get.
The good news? It is Friday and Bald Man is coming up tonight. Not only do I get to sleep in my own bed tonight, I don't have to get back here early on Saturday either. Whoo hooo!

Club Med

2009-10-15T11:34:00.002-06:00

We continue our stay at an outrageously expensive resort. The service sucks, the food is adequate although fairly boring. No mint on the pillow, no cute folded towels or napkins. No masseuse or any other spa type treatments.
And this is one club that first, you don't want to go to, and second, are beyond happy to leave.
Our exit is looking possible at least for tomorrow. Little Man is no longer running a fever, is holding his own off oxygen. They need to see how he does when he sleeps before he is given an all clear. He is more interactive, a shade less vile and in general I can tell he is feeling better. He has me hopping around the room like a bunny, demanding this and that until I am ready to SCREAM! But I haven't. I just want to.
Because he has swine flu, he is in isolation so we can't go to the playroom or any walks. When Little Man heard that yesterday, he lost it, big time. This is not the hospital routine he is used to, and he made his unhappiness known. For at least the entire floor. I got paged from lunch. Ahem, yeah.
I got to spend the night in my own bed last night, while the boy's sweet daddy took a turn at the bedside. So grateful for a good man.
Bright Star continues to amaze everyone with her strength and humor. When asked on the phone by a friend what she was doing, Bright Star chirped, "dying, how about you?" Now you might not be amused by her black humor, but I got a big kick out of it. Do it in style my beloved Bright Star, do it your way.
Thank you once again for the kind comments and continued prayers. They are precious and cherished.

Carried

2009-10-14T07:30:00.002-06:00

There is no doubt in my mind that the Lord blessed me with strength beyond my own the last day. I got NO sleep the previous night, and I should have been falling over with exhaustion. You know me, you know how much I NEED my sleep. All I can say is God must have blessed me through the day. I managed a very difficult day and a difficult, sick child with more patience than I thought was possible, given how tired I was. I did it without one single drop of caffeine and my body felt fine. Personally I am convinced your prayers carried me. Thank you.
Little Man is slowly recovering from swine flu and pneumonia. Because of his seizure disorder, he is considered in a high risk category. I wish I had known that BEFORE he got sick. He is no longer throwing up, praises be! He is still running a fever and needing oxygen support, but he is getting better numbers on oxygen than he was before. 100% is the oxygen saturation most people are at. Anything in the high 90's is generally acceptable.
Off O2, Little Man was "satting" in the high 80's, low 90's. Off O2, he was in the 70's and low 80's. Off O2 meaning he has thrown the mask again. Ha.
Speaking of which, a funny. Yesterday was quite the battle to keep the oxygen mask on. When he was asleep, I would perch the mask on his face rather precariously, but it was good enough to keep his sats in the 90's, so we were good. However, everytime he coughed, he would wake up enough to realize something was on his face, and he would throw it off. I would wait til he fell asleep again and the reperch the mask. Rinse, repeat a dozen or so times.
Once, he woke up enough to grunt in a royally pissed fashion, fling the mask, roll over and put the blanket over his head. After he fell asleep again, I snuck the mask under the blanket. The kid made his own oxygen tent! He satted at 99 and 100 for as long as that lasted. I feel evilly wicked! Ha ha ha! Look at me, I foiled a kid with an IQ of 50. Go me!
I am sad for my friend whose little girl is inpatient around the corner from Little Man's room. Sad for her daughter and her for being stuck here without her family. For me though? It has been so nice. I have found laughter and sweet tears of praise in her presence.
My guess is that any hope I had of going home today would be premature, given that he was having fevers all night. But I think today should be a better day health wise for my sweet boy.
I am thinking of sleeping in my own bed tonight though. What a nice thought!
Thank always, for your kindness, your prayers, your good thoughts on behalf of my beloved boy and Bright Star.

Our Bright Star continues to hold off on leaving this journey until she is done making sure she has given every last bit of herself to her loved ones.

Mountain Monday Interruptus

2009-10-13T01:48:00.003-06:00

We are currently unwilling inmates at the Children's Hospital by the big stinky lake. Little Man has been feeling poorly all weekend, dry cough on Friday, fever of 104.9 on Saturday and Sunday. With Advil and Tylenol I was able to keep his temp in a non emergency range. He seemed to be doing better today. He woke up fever free and was talking and just feeling better in general. This afternoon, he got really listless again and it was all downhill from there. He started throwing up this afternoon and hasn't stopped since. The biggest problem was that he threw up all his seizure meds. We made the trek down to the hospital by the big stinky lake and they are holding us captive! The NERVE!
I am no dummy though, and I was loaded for bear before we left. Having been around this particular block more than once, I made sure my bag was packed, mini DVD player, laptop and chocolate. Plus some other sundries, like clean undies and a toothbrush. I even remembered my pillow!
Hopefully after some rehydration (by IV, poor kid)and some rest, we will be heading home tomorrow. Fingers crossed and prayers.

This has really been a lousy weekend, Bright Star (my niece) has reached the end of her battle and Breast Cancer will have claimed another life in the next couple of days. I wish she wasn't so young, I wish I had had more time to spend with her, I wish I could have gone and been with her as she said her goodbyes, I wish she could have spent years and years healing lives as a doctor. We have been honored to love her, know her, admire her. Her light will continue to shine brightly, but it will be viewed through tears. Pray her home for me, okay?

****6 am update***
My boy has pneumonia. In spite of my concerns about the antibiotic they chose, they ran it and he had an immediate allergic reaction to it. My poor little boy, about lost his mind as he broke out in full body hives, he was screaming and flailing around and trying to pull out his IV. So, an IV of Benedryl and some Ativan and he is feeling better. On O2 and his oxygen levels are doing better. He is finally sleeping. I am beyond sleep, as I grieve for Bright Star and await the news. I am tired in body and spirit.
So very grateful I don't have to do this by myself. My good husband, my loving children, friends, lift me up at this time.

Mountain, uh... Wednesday?

2009-10-07T21:33:00.009-06:00

I must express my gratitude here for a couple of things. One, for your kind support, loving words, thoughts and prayers during a difficult time last week. It was a rough week and I am ever so glad it is over. Two, that last week is over!
My mom is home again and recovering very well I am so glad to be able to say. That was just scary, and she can not do that again. The plan is for me to go out mid-ish October with Buttercup and her parents to go see her. The Bald Man will be staying home with Little Man so I can do some serious visiting, and laughing, and heck raisin'. Already the girl cousins are planning some get together time where we can visit and laugh til our sides hurt.
Have you ever craved laughter? I do. I crave the kind where you end up with tears running down your face, your stomach hurts and you can't catch your breath. I NEED some. I am sure my cuz'ns and sisters will be happy to supply me with a bunch. God bless them.

On to the pictures. Autumn has arrived. Having lived in California for a good portion of my life, I am always grateful for the four seasons Utah has, versus the two California has. Hot and Foggy. Also known as summer and winter, with a week or two of fall and spring here and there. Lucky me, not only do I get to personally enjoy all four seasons, I get to take pictures and ~~make the rest of you jealous~~ share them with you!

I think Mother Nature was showing off a bit, but because she did, I was privileged not just to witness, but also record, where Winter and Autumn met.

Little Man is continuing to enjoy playing soccer. I am pretty sure I like watching him even more than he likes playing.

I continue to be the luckiest grandma on the planet. When my own children joined our family, I was very sure that there were no other children on the planet who were as beautiful and as smart as mine. I was wrong. My grandchildren have managed to surpass the beauty and intelligence of my own children. Who knew it was possible?

I know I say it all the time, but it is always true. As I look at the pictures from the previous days and weeks, trying to decide which ones are the best,the bad times melt like the fall snow, and the good moments shine like gems, waiting to be picked up and admired. The pictures not only document the growing of the children, and the passing of the seasons, but also find a way to distill my joy and delight in my family and nature. Thanks for sharing the walk with me. You make all the difference!

Even Better!

2009-09-29T16:26:00.001-06:00

Come and do the extubation happy dance with me! She is breathing on her own and doing better. Still in the ICU, but I feel like the weight of the world is off my shoulders. And now she can talk, so I will just ask her if she wants me to come.
Thank you, thank you, your kind words, thoughts and prayers make a world of difference.

Better

2009-09-29T09:14:00.002-06:00

I slept last night with the phone next to me, dreading to hear it ring. It never did. I slept off and on, kept waking up, had some bad dreams.
This morning, my sister, Little and Loud called to say that mom is somewhat improved. She is still intubated, but doing some breathing on her own. Her heart, lungs and kidneys all have improved function.
My mom is so ferocious about her health. I always ask if she wants me to come when she has a surgery, but she always tells me not to make a big deal out of it. If I went without her approval, I would face her wrath later.
I have been planning a trip out there to visit for the middle of Oct for months, so I waver between, do I go now, or wait?
My sister is going to ask my mom if she wants me there, and of course, if she says yes, I will drive as fast as I can to get there.
Part of me says to wait, and go in Oct, and help her while she is recovering. We shall see.
Thank you so much for your kind prayers and thoughts. You have made my vigil much less lonely.

No Pictures

2009-09-28T21:44:00.002-06:00

My mom had surgery today for her haital hernia, and she is just not doing well. They had to intubate her and she is in the ICU. Her heart, her lungs, and her kidneys are all not doing well. Please send prayers and good thoughts. I am just so not ready to say goodbye to my mom.

Fallish Mountain Monday

2009-09-14T20:06:00.010-06:00

What a huge difference from last week to this week. Those of you in the area experienced the drastic drop in temperature and the big storm that came in today. It is starting to feel like Autumn around here. I would be happier if I didn't know that 6 months of winter was straight on Fall's heels. I am praying for a nice, long Autumn.

Encouraged by the requests of her adoring fans, Ms. Tenacious is making an appearance today!

Oak leaves make a beautiful frame for mountains.

This is one of Ms. Tenacious cousins, from the same tree. I like acorns, I don't know why, but I think they are so pretty. I like that they come in two pieces too. A cap and the nut. Rather cool.

Autumn tinted rose hips. (Should you ever be in need of Vitamin C, rosehips have a great deal of it. Good cure for scurvy!)

Some of you will love this, and some of you won't, but there is no deny'n that the leaves are beginning to change color, like it or not.

Besides Fall being around the corner, it is soccer time again!

I LOVE watching my Little Man play soccer. I would never on purpose miss a game of his. There are few things that bring me as much delight as getting his soccer gear together and going, sitting in my little folding chair and cheering for my boy! The league he plays in is for children with disabilities and they play with other kids around their level.
I guess it means so much to me, because it is the closest thing to just being a regular ole mom to my boy. Love the other parents, love the other kids. Love the way everyone cheers for everyone else. Good times! His smile means the whole world to me!

Now, for the cuteness!

After the girls were done playing in the tiny pool, we decided Jack needed a bath. He was NOT amused. We were.

Our Buttercup!

Her eyes may be shut, but I can't resist her dimples!!

Check out these eyes! If they stay blue, they will be our first. Everyone else has brown eyes.

Thanks for dropping by, I love sharing my life in pictures with all of you. As usual, as I go through the pictures, trying to decide which ones are the best, (only the best for you, blog darlings!) I find myself feeling richly blessed.

Mountain Monday

2009-09-07T21:50:00.004-06:00

The benefits from not posting for such a long time is that I have a LOT of pictures for Mountain Monday. The downside from not posting for such a long time is I have a LOT of pictures I need to whittle down to the shining few.

A few weeks ago, for our Saturday date, Bald Man and I went horseback riding up Logan Canyon. I saw the ad and it said Logan, and I was thinking, Logan isn't that far away. Um, for those of you who didn't know, like I didn't, Logan Canyon is a LONG canyon, and we very nearly ended up at Bear Lake. It all worked out just fine though, and it was so, so, so beautiful up there.

The day was cool, and the wind was blowing lightly. As we rode through the aspen grove, you could hear the creak of the leather in the saddles, the jingling of the metal pieces from the harnesses. Clopping horse hooves, with the occasional snap as a hoof clipped a rock, was a soothing cadence. The wind made the trees creak slowly and the sound of the river in the distance, murmuring gently, was poetry in real life. The sun was alternately shining and hiding behind the clouds. Enough so it was warm, but not enough to make it hot. It was utterly perfect, and when I close my eyes to think about it again, it still makes my heart fill with joy and my breathing to slow and deepen with the peace of the memory. It was stunningly beautiful in the canyon, but you don't have to take my word for it!

Little Man woke up, so I guess I am done with this post! No worries though, I am around and hopefully with get at least one more post this week, if not two.

Macro Mountain Monday

2009-08-31T21:01:00.006-06:00

First of all, thank you, all of you who didn't just forget I existed. Your comments were so sweet with our little announcement. Pygmy Child and Brown Boy are expecting their little bundle sometime the middle of April and we couldn't be more thrilled. While we wouldn't mind a change of pace and having a grandson, Brown Boy's mama, the "other" grandmother had only sons and is really wanting a granddaughter. I feel so richly blessed, so we are actually hoping for another girl. BUT, we will adore and spoil rotten whatever the Lord sends.
I am slowly reading and commenting on everyones' blogs again, so no fear, if you haven't heard from me today, you will in the next couple of days.
As for my blog hiatus, nothing terribly bad happened, but lots of little, not so great things did happen, including our Little Man losing his ever loving mind and ours too in the process. Once again, nothing huge, but lots of little things. Now he is back in school. Whew. Same school, same teacher, most of the same kids, the transition back to school has been really good. Little Man seems to be settling down, and we are all starting to breathe again.
Macro photography is basically close up pictures and enlarge-ifying of subjects, hence, the "macro" part. I love you so much, I went out and took a whole roll of film for you. Well, it would have been a whole roll, if I were using film. So I think I should get the credit as if I did use film and have it developed, even if I didn't. Don't you?

One frog yes. If you look close, you can see another one!

A turquoise dragonfly!

This spot is just so very lovely!

If you en-big-ify the picture, perhaps you can see someone hiding in the mossy algae.

I kind of hate to mention it, but the rose hips are telling us even though the weather is still hot and sunny, fall is closer than we think!

Who knew a plain 'ole weed could be so pretty?

I am going to have to a separate post on the grandbabies, but for your entertainment and delight, Buttercup is cooing, smiling and laughing now! This is your official warning. The level of cuteness in the next picture is unmeasurable because it is off the scale. Look at your own risk. Tangled-me does not take responsibilty for any lethal cute overdoses, or bruises and broken bones that may happen if you fall over from being overcuted. Okay, ready?

Told you so!

OMG! (Oh my gosh)

2009-08-26T19:55:00.003-06:00

***edited to add***
Oldest child, Pygmy Child and her husband Brown Boy.

April. FIVE people! FIVE. I am getting old!

Guest Post

2009-08-03T09:00:00.003-06:00

I have a guest post over at Mormon Mommy Blogs.

Mountain Monday!

2009-07-20T21:14:00.008-06:00

Whoo hoo! I had the quietest day today and boy did I need it. So, Mountain Monday is ON! Last week was crazy. I am way behind on blogging reading, but fear not, I will catch up this week.

This picture was taken mid afternoonish and I think it shows the sere heat of the summer. Everything is hot and still, the heat waves drifting quietly up from the pavement. Makes you oh so very thankful for air conditioning.

This picture of Ms. Tenacious Oak Leaf, still hanging in there, is for K from Role Playing With Kids.

I am not sure exactly what the supersize dandelions really are, but they are pretty! (I found it, they are Western Salisfy, or Goatsbeard)

This is one of our neighbor's puppy. I could NOT get over his ears. He is half Papillon and half dachshund. Those ears stand up just like the picture.

This one is titled, "baroo"!

The Pea is such a fish. She is fearless in the water, jumping, flipping, falling backwards. Really, this child makes my heart sing.

Last week was so crazy I didn't even get my camera out! But, that doesn't mean I wasn't playing with my grand babies and doing stuff with Little Man. It just means there wasn't a camera in between me and my life. Good times, just busy. Thanks for hanging in there!

Finally! Montain "Monday" Also Known as Thursday

2009-07-16T21:02:00.008-06:00

I am having an insanely crazy week. Nothing bad, nothing particularly wonderful, just busy. Lots of playing with grand babies and taking the boy swimming. I am seriously behind on the reading and commenting on all your blogs! I apologize and promise to catch up as soon as I can.
So on to Monday! Amber from Soggy Cheerios invited me to join her on one of her favorite nature walks. It was so awesome! It was beautiful and having her show me the things she loved was really a joy.

No doubt, Amber's corner of Utah is beautiful.

The most beautiful though, was the part she brought along. I got to sharpen my photog skills on her gorgeous girls! My kids and grandkids have all been brown, so it was way fun to get to snap these pretty little blondies. I told her later that I felt like a "real" photographer. Her girls were not just very pretty, but also well behaved.

Thanks Amber! For sharing your Utah and for letting me play with your beautiful family.

"Monday" Post

2009-07-15T15:19:00.003-06:00

I am not dead.
I am not in the loony bin.
I am not in jail.
I haven't run away.
I am sorry!
I am alive and well.
Just really busy! I have some great pictures to share, hoping I will have time enough to get it up this evening.

Mountain Monday

2009-07-06T21:37:00.007-06:00

You still have a couple of South Dakota posts coming this week, but today, we are back with Mountains on Monday.
On Saturday, in alignment with our new commitment to get Little Man more exercise, we took him on a LONG walk. We went to a trail not far from where we live, where I often walk the trail for exercise. Honestly, I haven't been there since the winter, so I was expecting the same ole, same ole.
I didn't figure in all the rain! My brain could NOT wrap itself around the fact that I have walked this trail before. Nope. My brain said, this is leafy, moist, green, green, green! You haven't ever been here before. My Bald Man said it was like hiking in Oregon. Who knew the desert could be a rainforest?
I couldn't resist the pull to take pictures for Mountain Monday on this trail. Pea was missing her Bam-maw, so she joined me. She is a very pleasant walking companion. She pointed to the cotton blowing all over from the cottonwood trees and declared it to be "hot snow"!
We saw some black and white birds, which I identified as magpies, but the Pea thought they were perhaps skunk birds, since they were white and black. She also insisted the cougars were called jaguars. After I explained that jaguars lived in South America, she declared that "poom-vas" (pumas) lived in the area and were very nice, and were looking for us. I assured her that I certainly hoped they weren't looking for us. She made me laugh more than once.

Check out these thistles! They must be 7 feet tall!

Neither Pea nor Little Man gave a blink to how very tall this bouncer was, and both of them climbed right up and threw themselves down the slide.

Time for the Hokey Pokey!

Skating is not one of the things Little Man is very good at, but he really tried.

Now, onto more beautiful granddaughters!

Squid has darling dimples!

Love June Bug's squinched up nose.

Buttercup is such a pretty, pretty baby!

And I? I get to take pictures of the wonderful things around me and then share them with you. Nature and granddaughters two of my favorite things.

Regularly Scheduled Mountain Monday

2009-06-29T23:19:00.010-06:00

This post has been delayed due to technical difficulities. ie, Blogger won't let my upload pictures! Grrr. Trying again.

Back to the way things are supposed to be! Sorry, that deal was just too good to pass up and pass on to my friends.
So much to catch up on here. Plus I still have some more pictures to share from South Dakota.
First, now that soccer season is done, I needed to find something else for the boy. I had gotten a letter home from his school about Special Olympics, swimming is one of the sports, so we thought it would be good for him. We started on Saturday. First off, let me express my gratitude to the wonderful and willing volunteers who work with the athletes. Little Man had a great time and I was beyond thrilled to sit on the side and just cheer him on.

Bald Man and I have made a commitment to get Little Man out and more active. So we took him for a walk/hike. It almost killed me, it was very steep at times. But, it also gave our boy the exercise he needs so much, to help him be more calm. And, it was BEAUTIFUL!

I was very lucky to catch this little birdy sitting still enough for me to snap his picture.

Even luckier to have a camera that I can crop the picture down enough for you to see this!
A hummingbird! He was so darling.

After a long, hot walk, cooling our feet off felt like heaven!

It wasn't easy, and there was some foulness on both the part of the parents and the boy, but we did it! AND he totally kept trying to fall asleep from 5:30 on, so whoo hoo! Swimming this week for all of us.

Now you don't think I will let you get by without pictures of my precious little ones do you?

Buttercup. Isn't she just breathtaking?

Guess who turned two? Our June Bug!!! She loved her cake, (Happy, as she called it)

Yeah, I know. I am blessed.

This is a test of your emergency

2009-06-29T08:47:00.004-06:00

preparedness. If this was a real emergency, you would be running around like a crazy person trying to get all this stuff together. Why not buy it already put together for you? This kit includes a hand powered cell phone charger! All for under 30$ including shipping and handling. Do it!

Inexpensive Emergency Kit

Generally, I don't do this kind of stuff on my blog, but this deal is too good to pass up. It is worth almost 200$ and if you have any desire to be prepared, then this deal is for you!
You only have today to order this. So move it!
Be back later for your regularly scheduled Mountain Monday Post. This concludes this test of your emergency preparedness.

Getting In Touch With My Roots

2009-06-24T20:59:00.009-06:00

More tales from the prairie.
I was very busy trying to keep Little Man out of my Bald Man's "hair" so my handy hubby could do some things for my mom. (He told me it was his delight and his pleasure to help my mom out with her projects. He is such a good guy!)

When my cousin, Turtle Woman, and my sister, Shutterbug were on our photo safari, my cousin pointed out that the plant growing right there was the Timpsula plant. I have spent my whole life being vaguely familiar with the "prairie turnip" but not intimately familiar.

It is no accident that, in the Lakota language, the month of June is called tinpsila itkahca wi, meaning the moon when breadroot is ripe.

This is a picture of the timpsula flower. The plant itself is fuzzy and has five fingerlike leaves. It is important you know all this.

After my cousin pointed out the plant, I was dying to dig up the turnip part. Turtle Woman warned me the root was really far down, and I had no shovel. I found a 12 inch long piece of a jack in my trunk and dug and dug and dug and dug. I decided my ancestors must have had better digging tools, because the calorie return was definitely in the negative by the time I got that thing out the ground!

Here I am with my hair blowing in the prairie wind, being a wild Lakota woman!

Here is a video of me with my white man tool and my digging efforts.

Photo and video editing at www.OneTrueMedia.com

In my quest to keep the boy of my hub's way,on another day, I talked my cousins into taking me digging for Timpsula. It is pretty awesome, my cousin did a traditional prayer, thanking the Great Spirit for the food, and reminded me to put the chunks of dirt back to show respect for the earth. Sometimes, even I think being Native American is totally cool!

It was hot and very humid. I had sweat dripping off my face and down my back while we were tromping about on the prairie and digging. It was much easier to dig with a shovel. Little Man did pretty good, and my cousins were awesomely patient with him.

We dug a bag full of the timpsula, or prairie turnip as it is also known. I took it home, and then I had the fun job of getting the turnip part out of the thick brown woody part on the outside. It was a lot of work! As you peel off the outside, it also strips the long tap root of the brown part.

I chopped about 20 or so of them up, and boiled them in a pot of water with dried corn. Traditionally, it is also made with dried meat, called bapa, but I used turkey bacon which had been sauted with some onion. I fed it to my mother, who declared it to be delicous.

After they were all peeled, traditionally, the way to preserve the turnip for the winter, you braid the roots together and then hang it up to dry. When the turnips are needed, they are reconstituted in boiling water. My first braid is quite pitiful, but I am very proud of it, nonetheless.

It was very satisfying to be able to go out and dig up dinner, prepare it, eat it and then even preserve some for later. I don't how much more I can get in touch with my "roots", can you?

Prairie Monday

2009-06-22T22:19:00.008-06:00

Once more, I am overwhelmed by that AMOUNT of pictures I have from South Dakota. I will do my best, and I still haven't told you one single story yet. But those are coming.

These first two pictures I took, I am standing the same spot, just two different views.

This picture I took as I was driving down one of the gravel roads

These next few are a prairie sunset. It was breathtakingly beautiful!

This one of the bumblebee is just for K, from K and J. Mwah dear!

Yesterday was Father's Day and we got to have all four of our granddaughters over. For the first time. The picture isn't a great one of me, but I love it all the same. It was so awesome to have them all there at the same time!

What more can I say? I am blessed!

To South Dakota and Back Again

2009-06-19T21:57:00.008-06:00

Yes, I am home, and no I haven't died. Betcha you were wondering, huh? Sorry for the lack of posts. It was a busy trip and Little Man was my constant companion. There just wasn't any time for blogging. But fear not, I have many things to share with you. Stories, pictures.
Honestly I am overwhelmed by the sheer amount of pictures I took while I was there. I am still trying to figure out which ones are the best and how to present them. This first post is just about the first day we were there, but I am going to divide up subsequent posts into subjects too.
My cousin, Turtle Woman, and my youngest sister, Shutterbug (she was thoroughly delighted that she finally got a blog name!and I went on a photographic safari. I was completely delighted to find out that my sister shares my great passion for photography, so we had a chance to indulge ourselves. It was really awesome to have someone who totally "gets" the photography thing, and doesn't think that taking 20 pictures of a bumblebee is a waste of time.
Without further ado, my faves from that first safari.

Turtle Woman took us to this amazing natural rock bridge.

One of the things that left me just standing in awe was the sheer sweep of the prairie. While some might think the midwest is flat, South Dakota is made up of rolling hills. It looks kind of flat as you look over everything, so far you feel you can see the curve of the earth. But as you continue to move, valleys, creeks and hollows jump out of hiding. It was so incredibly beautiful.

I have lots more stories and pictures to share, so we will have a prairie monday instead of mountains.

A Mother's Heart

2009-06-09T17:06:00.003-06:00

I am reading a book and the book reminded me of this story. It happened to yours truly. Pull up a chair and let me tell you the story.
Long ago, probably about 20 or more years ago, Bald Man had a certain job. He worked with certain people. Among these people were a father/daughter pair. Which is kind of odd. The father and his 3 year old daughter. And no mother involved. I would bug my hubby for more details about this man he worked with and his daughter. The man was good to his girl. She was clean, well fed, taken care of. Nothing to note on those issues. I just thought it was odd. A man raising a little girl all alone. Bald Man, in response to my prodding brought home these answers. Yes, the little girl has a mother, but she is a bad mother. A drug addict, a woman who didn't care about her daughter, and did bad things, which is how she came to live with her daddy instead.
Still, I thought it was odd. My husband told me not to be so nosy, not to ask so many questions, not to rock the boat, because he had to work with this man.
And so I did. I didn't ask any more questions, I didn't say anything at all for months. 9 months to be exact.
But in those months, I still wondered. One night I watched a show on TV about a mother whose child had been kidnapped, who moved heaven and earth to find her child. Faces on milk cartons and posters of missing children. And I wondered, "what if it were me? What if it were my child who had been taken? What would I do, how would I feel?" "What if the man is lying and the mother isn't a drug addict?" And then, I knew I couldn't be silent anymore.
Through my nosiness, I knew the state that the father and his daughter used to live in. I called the police in that state, I told them what I knew. My husband was a bit frightened, his coworker had a bad temper and he didn't want him to find out that we had made an inquiry about him to his home state.
The next day my husband went to work and was very surprised to find out that his coworker was in jail. For kidnapping, to be extradited to the state he was from. My husband even spoke to him from the jail, thank goodness the man didn't have a clue where the information had come from. We never heard from the man again.
A few months later, my phone rang. The voice on the phone identified herself as the mother of the little girl that used to live alone with her daddy. The mother began to tell me her story.
How once, she had loved this man, how they never married, but they had a child together. She told me about the man's temper and his mean streak. How one day, when he had visitation with the little girl, he called the mother. He put the little girl on the phone and told the mother, "say good-bye, you will never see your daughter again". CLICK. And they were gone.
The mother told me of the tears, and the lonely nights. She told me about the posters and phone calls. The police and lawyers, as they tried to track where this man had gone, taking her daughter with him, into a night that never ended for her. She worried and she cried, but most of all, she prayed.
She prayed that a mother would see her child, that this other mother would know, somehow, that this little girl had a mother who loved her. She prayed the other mother would send her home.
I was the other mother. When she called me to tell me thank you, all I felt was guilt. I KNEW that little girl had a mother and if I had listened to my heart, I could have sent her home nine months sooner. The little girl's mother said it didn't matter, all that mattered was the little girl was home now.
Then she told me how the little girl kept her father's picture by her bed. The mother told me how she never, ever said anything bad about the little girl's father to his daughter. She said she loved her daughter more than she cared about getting revenge on him. I don't think the mother ever understood how much she taught me in that moment. Loving a child is more than just your own feelings. It means loving them more than your own feelings. Love isn't about how you feel, it is a still, quiet place, where the other person matters more than anything else in the world.
I won't ever forget the mother who taught me what being a mother is really about. In this crazy world, where children are used as pawns against other parents and loved ones, there are still people who believe what is best for the children comes first. This mother taught me that lesson. I pray I never forget it.

Just Another Mountain Monday

2009-06-08T22:43:00.007-06:00

Honest, it is still Monday here! It has been a crazy week, what with Buttercup making her debut, Little Man starting summer vacation and to top it all off, we are leaving on Thursday or Friday to go to a family reunion in South Dakota. Rather crazy here, but it is a good crazy and I am not complaining.
First the mountains and then the cuteness, okay? When I went out this evening to snap you some pictures, it rained and poured and hailed. I just waited out the storm, so the world was fresh and beautiful, just for you I am sure!

Can you believe I have FOUR granddaughters? When I started my blog, Pea was just a baby. Now four of them. Each one beautiful and precious. Mondays always remind me how very blessed I am.
Buttercup is doing well overall. She is a good eater, but her jaundice is a wee bit of a concern. They will test her again tomorrow, if her bilirubin contineus to rise, she will need to go under the lights.

It is a bit difficult to get things together to leave the state with Little Man home, but so far so good. He LOVES our newest little one. He is just so good with babies. I can't wait to take my camera home to the rez. I have some ideas for things I would like to capture. As always, thanks for the excuse to get me out and enjoying all the beautiful things around me.

She is Here!

2009-06-03T13:44:00.004-06:00

8lbs 1oz. 21 inches long. She has my cleft chin, the first of my grandbabies to have one. I am over the moon. Mama and baby are doing well. JJ is hopelessly in love.

Her name is Buttercup, ala Wendy.

The Mountains in June

2009-06-01T22:28:00.009-06:00

I love June, mostly because the days are lengthening. I love long Spring nights. It is sooo beautiful here in Utah. Some rain, but not too much and mostly just Spring busting out all over.

This oak leaf is as stubborn as they come, GO LEAF!

And what week would be complete without my beautiful granddaughters?

The Pea, looking pensive.

June Bug could NOT sit still!

My yummy Squidling. I made this hat and it looks soooo darling on her!

I heard a wee voice calling me last night. Bam-maw! Help, I am stuck! Did I run and help right away? Nope, I ran and got my camera right away! She wasn't very upset, or else I wouldn't have taken the time to shoot the poor thing. We got a laugh out of it though. She eventually just went forward and got her whole body through, rather than keep trying to get her head pulled out!

For some of you who look at my pictures on Facebook, a couple of these are repeats, but not all, so hopefully you aren't too disappointed. Thanks so much for letting me share, you guys are the most appreciative audience and you always make me want to try harder, just to impress you! THANKS!

Mountain Monday Redux

2009-05-26T22:32:00.004-06:00

While I can't completely restore Tuesday into being Monday, I can make up for the lack of a Mountain Monday post yesterday.
Without further ado:

I love watching the cloud shadows move across the mountains.

The wild roses are starting to bloom.

Ms. Tenacious is still hanging in there!

This patch of poppies is one of my favorite places right now. They are such a deep red, they practically hurt your eyes to look at them.

Generally, this is where I share some of my favorite pictures from the week. I am too tired right now, it will have to wait til tomorrow.

Monday Inspiration

2009-05-25T18:35:00.003-06:00

*Warning! Religious Content. My heathen blog buddies feel free to skip this post if you so desire*

Due to many different reasons, (School holiday, I have been home with the boy all day, Bald Man isn't home yet, the light is going to fade before he gets home, etc) Mountain Monday is postponed until Tues. But fear not, I still have something to share with you. I heard this young man speak on the internet first. He is coming to Salt Lake City in the fall and my heart wants to be there to hear him speak. He reminds me to stop whining, to be grateful and most of all, have the faith and hope to keep trying. Hope you enjoy him too. See ya all tomorrow!

Edited to switch out the video, I finally found the one I was looking for!

Mostly Wordless Wednesday

2009-05-20T12:37:00.004-06:00

Your assignment, should you choose to accept it, is to come up with a catchy blog name for our newest grand daughter. Your reward will be seeing that name every time I write about her! Deadline is June 3rd, unless she gets here sooner!

Mountain Monday Disappointment

2009-05-18T21:58:00.008-06:00

Long story short, I wasn't able to get out today until the light was fading. My pictures SUCK this week. Too dark. Ah well, I figure it is a good lesson to learn, in terms of finding lighting that works. I do have a couple, but this week is being chalked up on my learning curve. (Did I mix enough metaphors for ya there?)

I LOVE poppies. I am not quite sure I can explain why I think they are beautiful, but I think they are!

Many of you seemed to enjoy the sheepies last time, so here are some more.

I don't know what kind of flower this is, but the yellow is sooo brilliant!

Spring is quickly chasing the snow up the mountain sides.

Little Man got a medal for soccer. He was so proud!

These two love each other. It never ceases to amaze me at how patient the Pea is with the boy. She loves him so much, and he adores her.

This is the Pea showing off her "muscles". The face is always squished up when she shows you.

Check back on Wednesday. I have something special to show you! And a mini contest.

Mountain Monday

2009-05-11T21:38:00.006-06:00

Little Man had an appt with Neurology today. They needed to check on the status of the generator for his VNS (Vagal Nerve Stimulator, used to help control his seizures) I am practically positive that the last time we had an appt she had told me his generator was going to fail in about 7 months, so I went with some major trepidation thinking we would have to schedule a surgery to replace it. She told me the battery said it had about 3 1/2 years left. What a relief! I was so pleased, I even took him to get his haircut! Major deal for us, but the stylist is trained in working with kids with autism and she rocked.

Spring is in full bloom here in Utah. I know in some places it is practically summer, but here the temperature is warm, the days lengthening and everywhere you look, you will see proof that Spring has sprung! I love Spring, not too hot, not too cold, and the burgeoning beauty all around me takes my breath away.But here, no need to take my word for it, I will show you!

Even though Spring is creeping up on the sides of the mountains, Winter continues to hold sway at the very top. For those of you not familiar with Utah, you can find snow, sometimes even into the Summer months, up in the canyons and mountain tops.

The wild daisys have just showed up this week.

Ms. Tenacious is still hanging in there.

Wild lilacs!

Aren't I lucky?
Now, on to my picks of the week.

You know I am still loving every second of my boy playing soccer. I am going to be so sad when the season is over at the end of the month.

Now, on to the grand daughters! Squid, she is almost 9 months old.

June Bug, she will be 2 next month! Check out the curls.

The Pea, she is 3 1/2 now. Such a little hambone!

I love Mountain Mondays. There isn't a Monday that I don't do a post and keenly feel how blessed I am. I am surrounded by beauty, both physical and ethereal.

Another Point of View

2009-05-09T16:37:00.004-06:00

Mongoose says:
"Actually unless you left something out, it doesn't sound like they said anything mean or rude. Your kid WAS bothering them - so what if he's autistic? Some people like their personal space, and I don't think anyone really owes it to other people to enjoy their kids, autistic or otherwise. I don't think the problem was their behaviour so much as you being worn out and raw. Not that I blame you, but feeling miserable doesn't make the world owe us any kindness. I should know.

And I know I sound like a total b!tch saying this, but I don't mean it as being rude to you (even though I'm pretty sure it sounds that way). It's just a matter of perspective."

You have a right to your own perspective Moongoose, it is true. And they were very rude, making noises, whispering loudly to each other, throwing very ugly looks. Blocking my son from seeing the screen as if they were 4 years old. And you are correct in saying that my son was bothering them. It is true, they were bothered by my son.
But, they were NOT autistic, and their IQ's are significantly higher than 51. I am assuming, since they have reached adulthood, they have gone to school, and been exposed to people who are different from themselves and should have learned a few manners along the way. Obviously a lesson that fell on deaf ears in their cases, although I am fairly sure their mothers would have horrified by their appalling lack of human charity.
My son at least has an excuse for not yet having learned how to behave in public. What is theirs? He stood too close. He didn't touch them, he was bouncing and making noises. I was doing my best to help him not stand so close, but outside of completely physically restraining him, I was in a tough spot, only because they were being awful about it. I think some people think my son should not be allowed out in public, so he can't "bother" other people.(Not you Moongoose, but the couple we were behind) I am just grateful that this is just about the rudest set of people I have ever run across. For the most part, people are kind and accepting and try to do their best to help me show Little Man how to behave in public. If I never run across such unkind people again in my whole life, I would be okay with that. Next time they should order from Netflix, so they don't have to deal with people who might bother them. It is far easier for them to modify their reaction, than it is for me to instantly find a way to get my boy to change his. We are working on it, but it is a very long process, seeing that he lacks some of the most basic things to be able to train him. Like memory and intelligence, and an ability to read social cues. He wasn't dangerous, he wasn't touching them, he was standing too close. I don't think they will die from it anytime soon. Although at this point, I might wish it!

War and Peace

2009-05-08T18:20:00.003-06:00

Today after Little Man got home from school, he wanted to get a movie. We took off to our favorite movie renting/buying place, Redbox. It isn't a store, but a little kiosk thing, this one outside of our local McDonalds. There was a couple in front of us. Little Man got up close, and tried to look around the man, so he could see the screen. The man made an annoyed noise, and blocked Little Man so he couldn't see the screen. I was surprised, you don't punch in any personal information, so there isn't much to see. I grabbed Little Man and apologized to the couple, and said that my son was autistic.
It went from bad to worse. Little Man was excited and bobbing up and down. He never touched either of the people, (thank goodness!) but he got too close and they were talking to each other and throwing death looks at me and my son. I finally grabbed him and said something about how SOME people have no patience. The lady got all snotty and said that he was BOTHERING them. I replied that it was a good thing everyone in the world wasn't like them or the world would be a much sadder place. I was soooo angry I could have scratched their eyes out. My mama bear self was just roaring to kill them!
Right after the rude people left, an older gentleman came up behind me, got closer to me than even my son had been to the other couple and said, "I just want to look over your shoulder". It was actually nice, because it helped point out how out of line those other people were.
Dang kiosk though, it wouldn't vend the movie Little Man wanted, so we left, with him in tears to go to another Redbox.
Once more, there were people standing in front of us, getting a movie. Little Man moved close so he could see the screen, I grabbed him, my heart still smarting and my feathers very ruffled, and said, "hey bud, not so close".
The lady in front of me, said, "it's okay, he isn't bothering me". To her surprise and mine, I burst into tears. The nice lady and her husband listened with kindness as I told them why I was crying. The husband said, "your son isn't a problem, he didn't do anything wrong, and those people were not nice. If I had been there, I would have given them a piece of my mind, I have a problem with people acting like that!"
I expect to pass through this world but once. Any good therefore that I can do, or any kindness or ablities that I can show to any fellow creature, let me do it now. Let me not defer it or neglect it, for I shall not pass this way again.
William Penn
Thank you nice people at the kiosk, for being the soothing balm for my hurting heart. And rude people? I hope you burn in hell for being mean to my boy.

Mountain Monday In May

2009-05-04T20:46:00.008-06:00

Check this out!

On Saturday, Me's Blog, Eagles View, had a birthday lunch!
It was awesome fun, great company, I laughed and laughed. Check out the link for everyone who was there. I got to meet the (in)famous Motherboard!
Here I am with Motherboard!
She is just as snarky in real life as she is on her blog, have no fear.
I think Me's blog had a good birthday celebration if loud laughter and talk about sex is any indication.

There was a big storm that moved through Utah and I caught the clouds as they were retreating.

Ms. Oak Leaf, she continues to hang on, and the new leaves are budding around her.

I love it when you can see the cloud shadows on the mountainside.

And, a couple of favorites from the preceding week.

Look at my boy grin!! Have I mentioned recently how much I LOVE being a soccer mom? I love watching him run and play. It is so incredibly average and cliche and I love every second of it. Obviously my boy does too!

I took the Pea to a place that serves "tea". They have dress up clothes for the kids and the Pea was delighted.

It is sooo good for me to be able to remember all the good things that happen every week in my life.

Hard Things

2009-05-03T19:40:00.002-06:00

Today, in a few quiet moments, Bald Man and I lay together, spooning in the bed. I was reading, he was watching TV. My husband kind of twitched and I wiggled a bit and said, "what are you doing, having a seizure?"
My husband, thinking he was being funny, began a rhythmic jerking. What wasn't funny was how my gut clenched and my heart quickened. I said sharply, "don't do that! That was scary!"
Still thinking he was funny, Bald Man made some comment, I don't remember.
I said "do you want to know how that feels? Let me show you!" and I began to make rhythmic, jerky movements of my limbs. My husband said quietly, "don't do that".
Funny, not funny ha ha, but funny strange and deeply sad, is how visceral the reaction was. How deeply my body remembers, how my heart breaks when I feel the brain storm overtaking my son's body. When the movements spasm against my side and I stiffen in response, and my heart cries out in frustration.
Seizures. My nemisis, my enemy.

An Apology Precedes the Whine

2009-04-29T08:20:00.003-06:00

I am so sorry, but I have got to whine. I need people to feel sorry for me, because I sure as heck feel sorry for myself.
Little Man woke up last night at 2. TWO A.M. people!! Two in the morning. And then, he kept both Bald Man and myself up for the rest of the night. He never, ever went back to sleep. I kept going back to sleep, but kept getting waked up by the boy. Over and over again. I am so tired now, I can hardly breathe.
Please, this has got to stop, it will only take a couple more nights like this to put us into crisis mode. It has been so pleasant here lately and I have been enjoying the ride of peace and calm in our home. I wish I could say this was an isolated incident, but really, the last three weeks or so, we have had at least one or two nights a week of poor sleep on his part. I have been pretending it wasn't happening, because I don't want to face reality. I want and need something magical to happen, and for him to start sleeping again. The thought of us needing to mess with his meds makes me want to start bawling. I don't want to go down that road.
Feel free to pretend that you never saw this whiny post and not leave a comment. Unless you want me to feel like someone cares. In which case, leave me some comment luv!

Mountain Monday

2009-04-27T21:32:00.008-06:00

Spring is finally in full bloom here in Utah. Sure there were a few snow flakes yesterday, but in spite of mother nature trying to mess with our minds, the evidence says Spring is here to stay. YAY!
In spite of the fact that Pygmy Child returned home to her husband and home in FL, we are managing to go on without her. We miss her laughter, her joy, her sweet loving ways. It was wonderful to get to spend so much time with her. Mountain Monday goes on, with or without the Pygmy Child.

We drove by this spot last week and Pygmy Child declared it to be the epitome of what Spring is supposed to be, so in honor of her, I post this:

The sides of the mountains are verdant with spring growth. Creeping up the sides, soon the mountains will completely join in with the valleys in celebrating a new season.

Ms. Tenacious Oak leaf, surrounded by her aborning siblings.

This is shepard's purse, either a weed or an herb, depending on who you are talking to.

And now, some of my favorite pictures from the preceding week.

Soccer!

My daughters wanted a picture of themselves. Wow, it is much easier to work with grownups who cooperate!

We took the kids to the park, I had bought the children matching outfits in hopes of getting a nice group shot. Yay, right! Ha ha, now that I have stopped laughing at my own hubris, I can stare the pictures proving how very silly I am to try!

June Bug did a face plant in the sand. She didn't cry, but she didn't much like the sand in her mouth. We laughed. We are mean like that.

Squid's nose hook gets me every time!

I am totally enjoying the sunshine and greeness surrounding me. Hopefully you are getting a chance to drink in Spring too!

Unexpected Miracles

2009-04-24T19:16:00.003-06:00

Who knew?

Parenting a child with disablities means putting aside the dreams and hopes you had for your "normal" child. But sometimes it also means dreams come true. They might look a bit different than the first ones you had, but they are made even more meaningful because of all the tears.
I cheered at my son's soccer game. I cried just a tiny bit, with joy and disbelief. And when he scored a goal, ran out to the middle of the field and cried "cockle doodle doo!" My heart cheered with him.

Mountain Monday With a Side of Spring!

2009-04-20T20:35:00.007-06:00

Pygmy Child is still brightening our days with her laughter and easy going ways. I know her hubby misses her, but I am so grateful he was willing to share her with us. It has been over two years since I have gotten any real amount of time with her and it has been awesome! She will be here until Saturday.
Today was an amazingly beautiful day. 74 degrees! And last week it was snowing. Utah is a bipolar state, without a doubt.
Today was made extra special because I got to share one of my favorite spots with my daughter. I also got to share my camera, so some of the pictures were taken by her. It was so lovely, but enough words, on to the pictures!

This flowering plum tree is right outside my window. Amazing, huh?

As we were driving to one of my favorite picture spots, we spied these horsies chewing on a fence!

(P.S. I know it isn't good for horses to chew wood, but they were rather cute while they did it)

Avocet on the water:

Avocet tail on the water!

Pygmy Child is the one who took the next few pictures. Considering it was her first time with an SLR, I was really impressed. I think she has some real talent!

Red Winged Blackbird, and he was singing his heart out. I wish I could share that part with you too. You will have to settle for visual.

We are pretty sure this is some type of vole that was running around.

Cute kids pictures! Darling grandchildren and my handsome boy!

It is so wonderful to have the feel, the scent, the sounds and the vision of spring here. I am enjoying every minute of it! Hope you are enjoying the Utah spring, at least through my eyes.

Mountain Monday, Or Is That Tuesday?

2009-04-14T07:44:00.005-06:00

Yup, it is true, I suck. I am WAY, WAY behind on blog comments, and it is Tuesday! What the heck? Here is the heck.
I took a day off yesterday. I should have done housework, I should have blogged, I should have caught up on my blog reader. I was sitting, goofing off on Facebook yesterday, thinking, "why can't I motivate myself to get up and get some housework done?" I puzzled and puzzled. Slow dawning realization. I had just finished a 9 day sentence in the service to my little despot. And it isn't that it can't be done, but I just can't do much of anything else and him. When he is home, he pretty much has every last little bit of me. No wonder my little self was rebelling at the thought of doing anything that wasn't fun. So at the insistence of myself, I took a mental health day. I did NO housework. I did do a couple of errands, like paying the fee so the boy can start soccer on Thursday. And I did get out and get pictures taken, that is no duty in my book, but a weekly pleasure and delight.
Yesterday Spring poked her head out for a bit. And just for a bit. It is going to snow tomorrow, and it is raining as I speak. UGH!
Yesterday however was glorious. Hopefully my pictures will show the spring I am longing for!

And now, even though I have more pictures, I really gotta get moving. Guess why? Because Pygmy Child will be here tonight!!! Whoo hooo, we get 11 days of her. When she and her hubby came at Christmas I felt so robbed. I was going crazy what with the winter break and getting Christmas together for the fam, I really didn't get any time with her. She is coming for 11 days and we shall have long hours of laughter and just plain TIME together. I can't wait!

A Story

2009-04-08T21:05:00.005-06:00

My mom ended up in the hospital this week, and it was fairly scary. She was at the local eensy weensy hospital on the rez, (reservation) but wasn't responding to the therapy, so they had her move to another hospital in a large city that was 300 miles away. Yesterday was the turning point, they said she would either respond to the newest treatment or end up in the ICU. Thank goodness she responded to the treatment and they let her go home today. Whoo hoo! And hopefully feeling better, since there was a fairly long term problem going on, that can now be treated with medication. She was happy to go home and I was happy to hear her sounding so well.
Let me preface this story with perhaps an explanation on native humor. A lot of bad things have happened and continued to happen to my people, and we can either cry or laugh. Mostly we choose to laugh. My memories of visiting with my family involve HUGE amounts of laughter. We all thought the following story was hilarious, so hopefully you will too. But if you don't refer to above! (I did ask my mom's permission before blogging this)

The drive from the local eensy weensy hospital to the large city hospital didn't go as planned. First, shortly after leaving the eensy weensy hospital, they realized there was a problem with the ambulance. They had to turn around and go get another one.
They start on the journey once more, and the weather is terrible. It took them 2 hrs to go 45 miles. They arrived at the itty bitty town and realized they needed gas, so the ambulance driver stops to refuel. As my mom was laying there on the gurney, she told the EMT that she really needed to use the restroom. He stared at her for a while, trying to figure out what they were going to do. How would they get my mother from the ambulance to the restroom in the gas station.
I drew you an illustration, a la Lana from The Kids Did What?

The EMTs wheel my mom, on the gurney inside the gas station

My mother asks the wide eyed clerk where the restroom was. My mom climbs off the gurney in her hospital gown, coat, pants and slippers.

Afterwards, my mother is returned to the ambulance via the gurney to finish her journey.

My mom laughed so hard when she told me this story, I hope it amuses you as much as it did me!

Mountain Monday, Now With Sunshine!

2009-04-06T21:33:00.006-06:00

Today was a beautiful day. Outside. Warm and sunny. I wish I could have appreciated it more. Little Man had a very off day. He doesn't like having his schedule messed with and today was no exception. The next nine days are going to be excruciating if today was any indication. I am hoping it is not. He got sent home from his theraputic afterschool program after less than an hour for hitting, scratching and spitting on people. I wasn't amused. Good thing the man got home before the sun went down, otherwise there wouldn't be a single picture for you today.
I did have a bright spot in my day of lunch out with An Eagles View and Bonnie from The Zoo. I even got some presents! Whoo hoo for nice friends who give you birthday presents. Ladies, you have no idea what it meant today!
So, hopefully for your viewing pleasure, Mountain Monday!

Lovely crocuses, or would that be croci? (I looked it up, it is both!)

It makes my heart glad to see that Spring is arriving in spite of the last few snowstorms!

Almost full moon

And a close up

I never go out on Mondays to take pictures without taking time to take deep breaths, to breathe in the wonder all around me, and to feel grateful that I am able to enjoy it. A moment of meditation and stillness in a rather rugged day, makes that oasis especially blessed. Thanks for taking time to motivate me to do it.

It's My Birthday

2009-04-03T22:15:00.007-06:00

Yuppers it is. Not quite 50 yet, but almost there!
Come along with me for a short stroll down memory lane...

Here I am, just a few weeks old

We lived overseas for a few years, I think this is Rome, the Vatican to be precise. I am on the far left.

Check out my cute ponytails!

This is Italy. Check out the mountain in the background. That would be Mt. Vesuvius.

Somewhere along the line, that little girl grew up, got married to the love of her life, and had six children. I don't know where she went, because now her children are mostly grown and she is a grandma. The years have flown, the birthdays seem to come quicker and quicker. I hope I am wiser, I know I am happier, and I know I feel blessed. I hope I can look back on the next few decades with the same sense of being blessed beyond my wildest hopes. Happy Birthday to me... Happy Birthday to me...

Franken Teddy

2009-04-01T13:47:00.003-06:00

I am teaching needle felting class currently on Thursday evenings. I wonder if this is how a drug dealer feels? All excited that someone else is getting hooked on something you enjoy so much yourself? Bwaahhhaaahaaaa! (insert evil laughter), you will poke wool and you will like it!
One of the gals in my class is starting on this teddy bear pattern. Don't get all concerned about copyright. I bought the pattern myself a couple of years ago, and this lady bought her own pattern, (I would never make copies of someone else's pattern!) and I am helping her with it.
I had to make another bear, in pieces, so she has an idea about proportions and etc. Because he is an example, and not thread jointed yet, I had to hold him together with felting needles, hence his name for now. Dang, he is so cute!
Here he is! I am just so tickled at how well he has turned out. He will be finished when my student is ready to finish hers, so I can use him as a demo.

This is totally random, but what the heck??? I ordered this little bitty MP3 player and it came in a LARGE box, that had another box, which was still huge, comparing it to the player. Who is the idiot in charge of this? If I didn't know better, I would think Kristina has converted this company to her ideology of using all the earth's resources in the next five years!

Mountain Monday Lamentations

2009-03-30T21:51:00.008-06:00

Spring, Oh Spring, where hast thou gone? You came so beautifully into my existence, breathing hope of new life into my days. Then you were gone, felled by this cold white crap!

Ah yes, it has snowed and snowed these last few days, and I just heard, it is going to do it again, TWICE more this week.

Make an on-line slide show at www.OneTrueMedia.com

Sorry for the whining, I just can't help myself. With those lovely days holding so much promise just a week ago, I am finding it difficult to rediscover my winter mojo.
At least it was purty for you bloggity peeps out there today!

Ms. Tenacious herself, hanging on still. I think I shall be sad the Monday I return and she has chosen to let go.

And yet, in spite of the cold temperatures, Spring cannot be completely banished. Her harbingers continue to flourish even in the grip of a lingering winter. Green leaves are growing on the bushes!

A bluebird, (oh please, if it is the bluebird of happiness, let it be bringing spring back!) looking for good nesting materials with her mate.

I had all three granddaughter this weekend. Of course I had to have Baby record some of their cuteness for you.

Squid

June Bug

The Pea

Little Man, who was strangely cooperative for some pictures. He has his good moments and he is such a handsome little devil!