Of Poop and Pygmies

First, POOP! Oh it is dreaded and a daily worry in our lives. Little Man, with his weird genetic syndrome and low motility gut, struggles with bowel issues on a daily basis. If you didn't already know about the Daily Poop Report (DPR) that goes on in Casa Tangled day by day, well you know now! The consequences of a series of poor DPR's means a call to the GI doc, with a what's next? So after two weeks of poor results, the big clean out begins this weekend! Even more clean out stuff than usual, hoping to avoid a hospitalization with its' attendant really yucky procedures to unstop a stopped up gut. Actually, it is going rather well, so Mama and Papa Tangled might just get to breathe a sigh of relief by Sunday.
Second, and even more important. Today is Pygmy Child's birthday! She is twenty-five. And as if to prove to us, that she is grown up and slipping away from us day by day, she is in Florida with Brown Boy for the next few days! But the treat for you and balm for my heart will be a short presentation of Pygmy Child through the years. She was in a hurry to get here, I guess she didn't want to miss Princess Diana's wedding, even though she wasn't due for another month. A tiny bit, just 6 lbs. After a short stay in the NICU, she went on to thrive.

She didn't exactly grow as we expected, but we wouldn't know why she was so tiny for a long time. Here she is with her best friend who she has known since she was 6 weeks old. Their friendship has thrived through the years and they continue to visit with each whenever the opportunity affords itself.

Here is our Little Bean at about the age of four. She has always had the sunniest personality and I am so grateful for the gift of her happy smiles.

Living in California until she was 12 afforded our sweet Pygmy with the chance to spend lots of time at the ocean. She has always loved it and here is a delightful snapshot of her unbounded joy in her beloved ocean.
Pygmy Child was 16 when Little Man came into our lives. She has been his second mother and the love the two of them share is precious. Here they are, Pygmy holding Little Man on the day our LDS adoption (called a sealing) took place.

Because of her special relationship with her youngest brother, even her senior portrait could not be complete without him.
And finally, even though it will be hard to adjust to having our sweet Pygmy live so far away as she moves to Florida in December, I am mindful that Bald Man and I must not have ruined her too much, as she finds her wings and flies away, just as we always dreamed.

Happy Birthday Pygmy Child, I remember the day I first saw you like it was yesterday. Somehow the years have flown and you have grown,(somewhat) and now you are unfolding into such an amazing person. Your compassion, your willingness to help others, your wit and your love, amaze me and delight me. I am grateful for the day God decided to gift you to us. Blessings on you this day and for the rest of this year as you fly darling.

Falling in Love

Romance is an amazing thing. The tender newness of the relationship. You meet, both of you so hesitant, so worried that the other won't like you, much less love you. But the other! The incredible beauty of their eyes when your eyes finally meet, the quick intake of breath as you realize there is something there, something utterly unexplainable and ethereal and yet so real it is tangible. The exclusion, as your mouths touch, the tender feeling of hesitant exploration. The soft touching, so sweet, so slow. The whispers, to and from, float in murmurs hushed across the small space separating you. The two of you own the world. In this room there is nothing and no one but the two of you. You realize with an otherworldly sense that you know so much more about the other already than you thought possible. The people who watch these two lovers gaze adoringly at each other to the exclusion of all else realize they are watching the birth of something precious and new. Love, amazing, delicious, uncertain, tender, and sweet. Meet my new love.

Her name is Gilly, she is a citron crested Cockatoo. She also belongs to a friend of mine. While I have always admired large birds, they are kind of scary with those big beaks that could crush your finger in a heartbeat. Gilly is new to my friend who took her as a rescue bird, sort of. Gilly's broken heart shows in her actions as she tries to keep others at a claw's length from her heart. But me? She loved me from the moment she saw me. Once she climbed on my shoulder, started whispering in my ear and kissing me, I realized while she might nip me with that mighty beak, she would never actually hurt me. A new love. sigh, I am head over heels and I think she is wonderful.

Yesterday when I left my friend's home, I could hear my beloved friend in the house, screeching her disappointment at my departure. I can't wait to go see her again. My friend and Gilly that is!

The Mormon Thing

This has been a Churchy kind of weekend and since I have been informed that 2/3 of my readership has never even known a Mormon before, I feel like I need to make sure I keep you up to date on that aspect of the Tangled House. (2/3, 2 out of the 3 that read!)
First off, Sunday. Well, actually that goes back to Wednesday when I returned home from my unplanned but intensely fun trip to Calif. Bald Man tells me one of our local leadership had called and wanted us to speak in church on Sunday. It is common when you have new folks move in to have them speak. The Ward, which is the smallest local unit usually consists of a few hundred peeps. Wards are geographically plotted, with the local congregation attending the ward they live in. The ward is run by a Bishop and a Relief Society President. Male and female respectively, with helpers of all kinds. Many wards make up a stake, bunch of stakes make up an Area. If you wish to locate your local ward, it is just a click away:
Meeting house locator for the US
We were asked to speak on faith. I feel impressed to use an experience our Little Man had about 3 years ago. We were attending the ward of my nephew and Parker spotted a young man in front who had brown hair down to his shoulders, curling at the ends, and full facial hair. Little Man, who was standing on the pew next to me, pointed and said, "Jesus! Mommy, it's Jesus!" This was said loudly during the meeting and I had to restrain my son from running up to this young man. What a sweet message of faith! It touched my soul deeply on many different levels. One, that my son KNEW Jesus was real and his first response was to run to Him. Run and KNOW that Jesus wanted nothing more than to scoop up my boy. Tender feelings of love and grace. A precious gift taught from a small child. So I spoke of the lessons learned, from this one, my son. It was sweet and I enjoyed sharing the story. I was told it was well done, but Mormons are known to be ultra polite, so I can't be sure!
And then, today. The 24th of July. It means nothing to most of you. But here in Utah, it is Pioneer Day. First I will have to explain it before I can even tell you why I feel inclined to talk to you about it.
Pioneer Day!
The pioneers were fleeing an extermination order in Missouri, (really! The gov of the state at that time, said shoot them all!) they came to Utah, looking for freedom to live the life they felt God wanted them to. They came under terrible circumstances, bare feet, walking on cactus, all that. On July 24th, the Church leader, Brigham Young looked down into the Salt Lake Valley and said, "This is the Place" They didn't really know where they were going until that moment. The LDS, (Latter Day Saints, another name for the Mormons) feel a strong connection to their pioneer heritage. This pride is especially strong in Utah, today is state holiday, fireworks, picnics, people dressed in red, white and blue, parades etc. Pioneer day is a bigger day here than the 4th of July. California didn't do so much, but there are fewer LDS folk there.
All this explaining just so I can tell you MY truth. Now I would not express my opinion this boldly at church for a couple of reasons. It is no use trying to tell someone else an unpopular point of view unless they asked for it and unless they were really willing to hear what you have to say. No one at church has ever asked, so I have never said. Bald Man knows how I feel though.
In fact, my opinion could possibly make you feel squirmy, uncomfortable and even guilty. If it does, I won't apologize, but I will say, I hope you will read it all, and then ask questions of yourself and of me if you need to. Please.
I HATE Pioneer Day. For me, this "holiday" does nothing more than tout the
Manifest Destiny propaganda so beloved by the conquerors of the American continent. Ugh. I hate it. Why do they all act like they came marching in here to an EMPTY place? It wasn't empty. Utah had five tribes living here, long before the Pioneers came to the valley. The Goshutes, the Shoshone, the Ute, the Piaute and the Navajo were all here, long, long before anyone of the whiter persuasion arrived. Why not tell the truth? We came, we stole, we murdered, we WON. Sure the Indians did the same in return, no one says we are perfect and the people were defending their HOMES, their FAMILIES, their LAND, few people should be able to find fault in that. History is the story of the winners. Pioneer Day is a celebration for the conquerors. Because of that, I HATE Pioneer Day and that is my truth.
**Tues update, stupid blogger, it won't publish this new post and I am frustrated. Let me try AGAIN!

Coming Home

My bloggy Bon Bons, Jo is home again. Right now, I must admit to not being thrilled at being home. I slept poorly last night, which doesn't add to my rather blue mood this morning. My blue mood started when Princess was late picking me up, it was hot outside, I didn't have my cell phone with me, (it only works in Utah) and when I finally wrestled the phone card into working, she didn't answer. She finally got there and Pea screamed, and I mean SCREAMED the whole way home. My nerves were frayed the moment I walked in. And what was I greeted with? Two sink fulls of dishes, two very full laundry baskets, junk and stuff scattered all over the apartment, dirty rings in the toilet, toys and blankets on the floors. Not a clean room to be found anywhere. (Opps let me take that back, Bald Man cleaned Little Man's room while I was gone, and it was looking bad when I left. So Little Man's room looked good.)
So I wake up tired, Little Man was foul this morning, I guess he is mad that I left. I spilled his fish oils all over our bed, so that adds to the laundry I get to do today. There is no food, so I can't even find anything for breakfast. I am facing at least this morning doing housework. I did think about just leaving it, going out to breakfast and then a movie, but there is a problem with that. I will just come home to the same thing. A better plan is to do all the work first, go out to lunch and then a movie, and I can come home to a tidy apartment. Plus the reward of going out after the apartment is clean is the spoonful of sugar I need right now.
Coming home is hard sometimes. I had a WONDERFUL time whilst I was away. I was loved, adored, spoiled. I was greeted with so many hugs and kisses and shouts of "Jo-Jo's here! I slept til 9:30 yesterday! (10:30 Utah time). I went out to eat at least once a day. Granny and I had hoped to get together, but with this trip being so last minute, we decided to wait until I came out in Aug or Sept with a bit more notice.
The trip home was on the plane was fun and interesting. I really despise being bored so I engaged my seat mates in conversation. I met Lawyer Boy to the left of me, and Beach Girl to the right. Lawyer Boy works in disability law, helping people get the disability social security they need. I was impressed with that. Curly blondish brown hair and pretty blue eyes, he is still single at 33. He was crushed at Beach Girl's response to his age and marital status. You would have thought he was 80. Beach Girl is only 21, interning in Montana, far away from her Florida home and so very homesick. She was so cute, but she would have dated one of her dad's friends before she even considered Lawyer Boy. Sigh, so much for match making. I told them what I would be calling them and told them to google themselves. So if they find their way to my blog, I thank them for keeping me entertained on the flight home, it was very short with their help.
But home I am, and actually feeling just a bit better for having got this off my chest. I did miss all of you though! Well I need to catch up on some of my blog reading, I will have to finish it after my housework, otherwise I won't get started til noon. My housework is calling my name. Shoulders back soldiers, broom and microfiber dustcloth at the ready, MARCH, MARCH, MARCH!
Onward Housework soldiers, marching as to dirt... with the broom and dustpan, housework doesn't hurt.. (Sung to Onward Christian Soldiers if you know the tune) See ya later all my Bloggity cakelets, stay tuned for the further adventures of the Tangled Household. (but cleaner next time)

Because I Could

Howdy from the airport. I am a techophile, and I had to try it! The joy of my trip began yesterday as my friends from California found out I was coming out and my phone began to ring and ring. My time is full with being invited to parties, family get togethers and many dinner dates. 3 Sushi dates so far. YUM! I feel loved, adored, cherished. Everyone is so excited to see me, and that is probably the best gift of all. Feeling so loved. I am in bliss. What fun to post from the airport. Love to all my darling bloggies. See ya soon.

Leav'n On a Jet Plane...

.. don't know when I'll be back again.. Actually I do know when I will be back. Weds or so. One of my dear friends in California decided today that she missed me way too much and said, here is my credit card, can you come tomorrow?? Whoo Hoo I am making reservations, doing laundry and packing. I may or may not blog while I am gone, depending on my activities and internet access. All I can say is this Mama needs a break and I am off to Cali to get one. Granny, any chance you are going to be going north in the next few days??? hmm???
Little Man has his days full with summer camp and poor Bald Man shall be left holding down the fort for a few days. I shall come home, pampered and spoiled, taken out to eat for every meal.. what a life!
Love you all and I shall return soon. Hold down the fort in Blogger Land for me, don't let the trolls get outa hand, or I will have to do some slapp'n when I get back.

Because You Asked

I will not go into great detail about Little Man's birthmother, because it would not be helpful to any of my family or hers for this infomation to be made public. His birthmother's death happened a while ago and a bullet violently ended her life. Her drug habit certainly contributed to her death, but I refuse to vilify this woman, whom I share a son with. Instead I see her as a symbol of what is wrong with how we treat so many we see as being "undeserving". Brown, poor, uneducated, she is like so many I know, some of them my family, trying to live in a world that is not our own.
Little Man's birthday is not til the end of the month, but this time of year brings so much sorrow into my heart. Little Man doesn't have enough going on cognitively to understand any of this. While we talk freely about his adoption, he doesn't know what the word means. For Little Man, he has a mommy and a daddy and brothers and sisters. But we understand the loss and I feel I must not only grieve for myself, for all that isn't, I need to grieve for my boy and now for his birthmother too. Someone must remember what happened, someone must cry the tears that need to be shed. To honor her for what she did do and for all of her lost dreams too. Our tribe practices memorial services, they are very important for remembering and honoring the dead, who will always remain a part of our lives in the circle of life. I hadn't realized until I was answering this question why it feels so important for me to do this. Now I know. Thanks for asking.

What I Can't Do

This time of year, (Little Man's birthday) always leaves me a bit beat up emotionally. I am forced to face the fact that love does not heal everything and in spite of the fact that I love my Little Man passionately, there are many things I can not fix.
I can not give my Little Man a normal childhood. I can not go back and love this tiny baby, abandoned at eight hours and left alone in a dark corner of the hospital nursery because his little body was wracked with the effects of drug withdrawal. He would be 3 1/2 months old when he came to us, and I have no way of knowing or doing anything about what happened to him before he came to us. I can not fix his congnitive, mental and physical deficits, no matter how much I love him. I can not make him enjoy going places with us,to the store, camping, amusement parks. I can not make up for his autism and social problems, or make other kids like him. I can not promise him one day he will grow up, drive a car, have a job or ever go to college.
I can not give him his birth mother, the one, who in a perfect world should have been able to raise our son. I can not give him back all his other brothers and sisters, now scattered to the wind, like leaves in the fall, swirling away, to disappear and never be seen again. Now I can't even dream of him ever knowing her someday, the way we wanted, when she was able to be functional enough. She is gone, her life cut short by a bullet, not even 30 years old. Now all those dreams died and need to be buried too. But this time of year always leaves me wishing so hard that things could have been different. I used to think his birth mother would cry on his birthday, for missing him and I would cry for her loss. This year I will cry for him instead, for all I can't do.

Your Travel Guide

Yikes it has been crazy at Casa Tangled. We didn't end up in the hospital much to my relief. This particular infection wasn't as severe as some of the others and the oral antibotics seem to have taken care of it. Little Man's hand remains somewhat swollen, but is no longer red and best of all, isn't getting any worse. Mommy Hawk is currently asleep with her head under her wing, ready to begin a new vigil at any time.
Having a medically fragile child is a rather like walking on the edge of a cliff in the dark. Sometimes you are closer to the edge than others. Sometimes you know you are close to the edge, other times you fall off without realizing how close you were. Falling off means ending up in Club Med.
Club Med: An expensive resort with really bad room service and NO chocolate on your pillow. In fact, you don't even really get a bed, just a stupid pull out chair that kills your back, plus their wake up service sucks since they do it about every 2-4 hours. No tears here for missing that little resort stay. We have been able to avoid it for just over a year, which is great, since the previous year we couldn't stay away more than 4 months at a time.
Yesterday Princess was in a singing competition at one of the local 4th celebrations. It was HOT, and Little Man was a beast. Screaming, crying, a bit of violence on his part. When Princess was done with the first round, we were outta there. Little Man did much better at home the rest of the day, and neither of his parents felt like committing mayhem on his little body after we got home. This is the first competition that Princess has ever lost, she was quite shocked, as any princess would be. What? They didn't chose me?
Brown Boy returned to Florida yesterday. Pygmy Child will be off to visit him the end of July. Their romance continues to flower and we like him very much. He is wound a little bit tight, but otherwise, he is a really sweet guy, who thinks the world of our daughter. He is a college grad, gainfully employed, good to his mom, same religion and he makes Pygmy Child smile. What's not to like?
Little Man is off to his summer program and mama is going to get some things done today. I have been driving on a donut tire for four days and Bald Man is really getting anxious about it. So first thing that will get done is new tires. Other things shall follow, like maybe a nap! Although all Bloggity Ones will note the most important thing happened first, blog update. I have got my priorities straight here peoples!

Not What I Had Planned

I did not plan:
To not post for a week! Sorry, bloggy darlings, it has been insanity city here. With Pygmy Child returning from Ecuador and Brown Boy staying in the room with the puter, well that means I am so behind on my interneting. I read the blogs I normally do today, but left no comments, so I am thinking of all of you.

For Little Man to get stung by a wasp yesterday. Last time that happened, we ended up in the hospital for a week with cellulitus. His hand looked fine yesterday but today is red and swollen. I just spent most of my day in the ER with him. They didn't keep him, but sent him home on antibotics and under his watchful mommy's eye. So I am doing the mommy hawk thing. Hopping from one twig to another, moving one just so, tilting my heady so my beady little mommy hawk eye can watch his hand. Does it look more swollen or red? Hmm, no not really, hop, hop, stare, hop. Ya know.

To not get enough sleep the last few days. I am TIRED! Too tired to post much, too tired to leave comments. I need to go lay down. zzzzzz
I promise to post as soon as I can. Keep Little Man in your thoughts and prayers, being at Club Med is NOT what I have planned.