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.
I am a new (anonymous) follower of your blog and thought I would delurk for a moment.
ReplyDeleteSometimes we do internalize-not out of shame or privacy, but to regroup. We are not hating, or being rude, we are ourselves processing the information. I think anyone with a child with any issues understands.
Sometimes those of us on the outside may seem awkward, and may not put the right words down to say what we mean, but that is not any different than how you are processing the information.
So I will say this. My fourth child was born ten weeks early. She was diagnosed with a very VERY rare disease that has no known cure. We were told the most frightening of things. At a point I decided to stop listening to the horrible diagnosis and began planning for life instead of thinking of her wedding, but slowing down a bit, and thinking of but one slow day at a time.
I decided if she would not survive, I wanted her brothers to have memories that were joyous...instead of stories that began with my sister died, she was always sick.
I made each day the best day I could. I made sure the boys and my baby would have a day that if it was her last, we could all look back and smile at how she touched our lives.
My husband and I shared many tears late in the night. We learned how to do things to a baby that would qualify for us to work in a NICU. And we continued on. It was hard for months to live this way, and then one day, it no longer was an effort to see today as a gift. It no longer was hard to only think in terms of small steps.
She has outlived all the doctors expectations. She still has struggles, but she is thriving in a life that should never have been...and I promise you, I believe much of her success, has been the attitude of those around her.
May you know you are not alone. Many of us walk silently in our worries, our fears, and our wounds of being a parent to a child that has issues. You have our shoulders to rest upon. But when we fail you, God is waiting, and He is always there.
May you know that your perfect sweetie is ever so blessed to have you as his mom. I can tell all will be fine because of you.
Take care
Jennifer
I've missed you! You know, sharing things like this..it's a funny thing. It can bless so many lives, being patient and open enough to share hard things. But sharing can make us stronger, I think.
ReplyDeleteI'd like to say thank you so much for sharing your story. I have a relatively mild disorder which impacts on my life but for most of the time I am able to get out and work, travel and live like so many other people. However, when it gets hard one of the key things which helps me to keep going is knowing that I'm not alone. I draw much of my inspiration from other people who face challenges. And finally, I think one of the reasons your piece today is so touching is because it was written from the heart- which makes it different from pieces that sensationalise and exploit.
ReplyDeleteAll the best
This is my first visit here. Hi. I am commenting because I related to what you said. My first born was born at 27 weeks. She was lucky to have survived but it's not been with out it's complications. The doctors told us she was brain damaged and we would just have to 'wait and see' what milestones she didn't hit. My daughter looked so perfect lying there too.I know the agony of not knowing and then the agony of knowing. The tiredness, the sadness, the grief...but I also know the love and joy that comes from having a child. I wish you luck with your journey. May you have peace in your mind and the love and support of others and may you be kind to yourself. You can only be the best you can be.
ReplyDeletei wish i could add something wonderful to the comments already posted here...but i can't. except to say that sometimes sharing our deepest fears and worries is a self-preservation method that has gotten a lot of us through very difficult times. don't be afraid to share. you may help others...and you will certainly help yourself.
ReplyDeletethere is nothing wrong with your son. My God designed him this way. For A Reason.
i will keep you in my thoughts and prayers. i am glad that your commentors are so understanding. there are such lovely people filling this world eh?
Keep on keeping on, sometimes that's all you can do. Worry and work can wear you down, that's for sure.
ReplyDeleteGood luck to you and yours,
Jenny
Take. One. Day. At. A. Time. Praying!
ReplyDeletehi i read your story and i have to say i know what your going through, i too have a son with partial digeorge syndrome and he also has a heart condition called TOF, he's only 4 1/2 months old and will be having heart surgery in 2 weeks. your son is gorgeous and i believe that they will grow up to be as normal as any other child.
ReplyDelete