Mixed Emotions

It is true.

I stopped writing the blog. Honestly, I stopped hitting publish. My draft folder is full.

2011 was a horrible wonderful year. Mostly though I was stomped in the face by it. It has been hard to get up.

Last Spring Isaac was diagnosed with 22q11 deletion syndrome, also known as (Partial) DiGeorge Syndrome.

Go ahead. Look it up. I did. If I thought the lab test mishandling during the pregnancy was bad, the slam down of being told this and looking it up....I have no words. And that's why no blog.

Worry was my mantra. That's a hard word to breathe day in and day out. So we started the rounds of tests to find out how 22q has settled in his body. Renal ultrasounds- check- he has both kidneys. Echocardiogram- check- his heart is perfectly formed and functioning. Immunology doc was a total jerkwad and even though he SAYS all the results came back perfect, he wouldn't hand them over to me. That's a whole story of its own.

So we went to Minnesota to a Children's hospital where they know about 22q and they actually treat the patients and Mamas with respect, like a partner in patient care.

So far, the only thing we can find is that his motor skills are slightly delayed and he's slightly low on insulin growth hormone factor. Even that low is still in normal range. He's little. 5% range. But he's a funny little dude. And so happy! And I am only 4 ft 10 inches, so being little is genetically possible.

And he's deaf. How deaf we do not know, other than Moderate to severe hearing loss. We have a test next week to determine extent and fit for hearing aids.

I struggle with sharing his story here. I struggle with opening up my child's medical file for the world to see when he has no say in it. And if I start getting more readers? My life as a reality show via blogger?

But what if people started hearing our story? Started advocating for their own care? Saw how beautiful children with genetic anomolies are? Prayed for us, prayed with us? I don't think we even shared his diagnosis with our church. I have totally turned in. Many of my friends don't even know.

I'm just not settled yet. I don't want to get attention for his medical condition and struggles. That's not fair to him. I know because I grew up with seeing that played out and how that can feel. Not cool. But there are other families out there, moms who feel as alone as I do at times, struggling too.

Tonight in one of the online support groups I found, a particular thread caught me off guard. and I ended up sobbing again. I'm up until 3am most morning and up again at 7am. Working these days on 4 hours of sleep. I'm here, but not really here for any of my kids. Caught on the phone with specialists, researching medical articles, traveling......or even just thinking and reflecting about it. Then on the floor doing physical work with Isaac. Praying that he catches up. Praying that the doctors will leave us alone, that someone will say it was all a mistake, another lab mix up.

Then grading papers, farm chores, selling pork, paying bills, keeping house, laundry, dishes, cooking.....

And at the end of the day there is nothing left of me. So tired.

Just watching the baby sleep can send me into tears. He's so perfect. So sweet. So happy. But he has this 22q11 dna sequence that has parts missing and that means something. But what? How will it show up? Why can't we find it? Not knowing is so hard. So grateful that the big pieces are ok, heart and cleft and thymus, but something is missing and we don't know what.

SOPA and PIPA are huge obstacles to the continuation of free speech and a free press. It's clear that the politicians supporting them have no idea how the fundamental pieces of this legislation will effect everyday life on the Internet. It's not about piracy - it's about greed and control. http://sopastrike.com/

This link has a good example of how law abiding web sites would be shut down by this legislation - http://www.techdirt.com/articles/20111220/03135817138/myth-that-sopapipa-only-impact-foreign-sites.shtml

Lots more information here - they've been following this story for a long time. http://www.techdirt.com/blog/?tag=sopa

Physics

New Traditions

Real tree. Surprisingly I am not actually allergic to pine trees.  

I got rid of all the plastic balls and pretty for pretty's sake ornaments. I was hesitant because we have cats and little kids. What I kept was anything handmade, glass, or nutcracker themed because I love that ballet a lot. The kids make ornaments in art class and we have plenty besides that. The tree may not be loaded with baubles but it is very pretty.

My brother, Uncle T, brought his beautiful family for a visit. We made Tootalini's and drank lots of coffee. He is just back from Afghanistan and is hanging a soldier ornament. Then of course his wife broke out into song and dance, "Soulja Boy".....cute. And kind of ....well, I hope my girls never get the references in it. Thank you Urban Dictionary. 

Lil'Bug carefully hung each one, on the right side of the bottom of the tree.

I pointed that out. She called me a grinch.  I wore my elf hat, she wore her elf hat. 

Lil'Bug decorated most of the tree. Blueberry Girl crashed early, but when she got up in the morning and every morning since, she says, "Good MORNING CHRISTMAS! GOOD MORNING TREE! HAS SANTA BROUGHT ME A POGO STICK?!" and then she checks. Not yet kiddo.

Cousin J. The artist! 

Watching Annie. The room always gets like this mid afternoon.
 

Is it just me or is it hard for other people to see their little brothers all grown up?

Speaking of little brothers......Zap is giving his sisters a run for it this week, He bites now. He has two itty bitty teeth on the bottom and he leans over to fake out a kiss.......CHOMP. Giggle giggle. And then he laughs some more. 

CHOO CHOO! *warning, breastfeeding picture

We had deliveries in Boone so I reserved tickets to the Scenic Valley Railway and packed a picnic. Blueberry Girl was SO EXCITED. She loves trains, cars, planes, and tools. This day was HERS.

I love homeschooling. Mine were not the only children on the train, but they were the only ones who struck up conversations with folks, including a midwife from Oregon and a couple from South Africa.  

What? Mama wants us to smile? At the same time? Ha ha ha ha. 

Blueberry Girl is saying, "Trains! For the win!" 

I love love love the way Blueberry Girl runs. 

1920's passenger train. Blueberry Girl touched and admired everything about it.  

No AC! Of course!

Like her nature, she watched and listened the whole trip. In awe. 

See? Totally obscene right? Take that facebook. 

Iowa is beautiful. Every single time I am blessed with viewing her vistas, the fullness of the blessing of living here takes my breath away.

And true to her nature, she talked non stop the entire train ride. Didn't even notice when a truck clipped the train.  People, do NOT try and go around closed barrier arms when a train is on the tracks. 

Beautiful too.

Baby Zap is ONE

One year ago. Birthday.

He was so impossibly small. 4 lbs 7 ounces when we brought him home. Lil'Bug and Blueberry Girl were both 9+lb'ers. Premie clothes are HARD to find. The 2 days he spent in the light box was impossibly hard. I cannot imagine having a NICU baby. I cannot imagine not being able to even hold your baby's hand while he sleeps. That light booth was heartbreaking enough. I have spent a lot of time praying for NICU babies this month. 

One Year LATER......

Zap is thriving. Tripled his birth weight, grown 7 inches. Sometimes this year was hard. He was diagnosed with failure to thrive because he gains weight slow and grows slow, that diagnosis changed to 22Q11 Deletion Syndrome 7 months ago. You know what that means to me? So much. It means that the impossible happened again. Most children diagnosed with 22Q11 need open heart surgery. Zap's heart is perfect. Most children with 22Q11 have a cleft palate. Nope. Not Zap. He's also got his thymus, kidneys, and parathyroid. We have gone to specialist after specialist trying to check off all the things that 22Q11 can mean for a child. So far, God has blessed this child in so many ways and blessed us too. We do not know what our path holds, but we keep walking it, thankful everyday for the health and joy that Zap brings to our lives. 

So. No. He's not crawling yet. But he will. He's not walking yet either. That will come too. He has not yet found his voice. I will be his voice for now.  Every time someone curious or aggressive starts criticizing his progress, I will be his voice. I will carry him. I will teach him what love looks like, sounds like, and feels like.

 

Happy Birthday Baby Zap. Mama loves you.