A Letter to My Unborn Son

Monday, December 12, 2011

Dearest baby boy,

For me, one of the hardest moments of parenthood so far was accepting the fact your big brother has a neurological disability (or four).  I vividly remember crying and saying to one of my closest friends "this isn't what I wanted for him."

Some people might interpret that as a selfish sentiment - that I was upset this meant my child might not grow up to fulfill whatever doctor/rocket scientist/astrophysicist fantasies I had. 

But what I really meant was that I didn't want my baby's life to be any harder than it had to be.  He was nearly two and I'd been watching him struggle from the day he was born.  The diagnosis meant that the hand he's been dealt is something he's going to struggle with forever.  Until then, I'd secretly hoped they were going to tell me he was just developmentally delayed and a few months in therapy would put him back on track.  That everything would be ok for him.

Which brings me to you.  And the fact that you could be here any day now.  And after 4 years of watching your brother struggle, I can't help being a little afraid of what the future might hold.

Before Bear was born, if someone had asked me what I wanted for him I'd responded with all kinds of emotionally naive new parent nonsense. 

There's no doubt that being special needs parent changed my perspective.  Things are both more simple and more complicated.  And now, when I put the "what do I want for him" question to you, the answers are harsh in their practicality.

1) I want you to be able to eat.

2) I want you to be able to sleep.

That may seem ridiculous, because ask anyone and they'll tell you that's what new babies do.  But the things is... not always. Not all of them.

Nothing in my life has been as physically and emotionally painful as having a newborn who couldn't nurse.  Going through clogged ducts and multiple rounds of mastitis and the mind-boggling pain of vasospasm was nothing compared to the fear and uncertainty of having a baby who simply lacked the ability to work out suck, swallow and breathe.  By the time I got to the other side of it, even a couple of La Leche women told me they would've given up.

The first days of his life - over a holiday weekend when no one on the lactation help list answered their phones - were a horrible blur of pumping every 90 minutes and dripping milk into his mouth with an eye dropper.  I survived on 20 minute naps - that's all the time there was between hour long pumping sessions that only netted me a precious ounce to feed him with.

By the time he was 7 days old and we were finally able to see the lactation consultant, he had lost more weight... my nipples were cracked and bleeding and blistered and hideously painful... one breast was already clogged and on the way to infected.  The lactation consultant spent 3 hours with us.  By the end of the session, she was in tears.  She'd never seen anything like it.

He just shut down completely.  Trying to eat was simply too much for him. I can't tell you how many times it crossed my mind that if he'd been born in another era (or even a less developed country), he would have starved to death.

She tried every single nursing aid there is.  At the end of that session, we were reduced to finger feeding - taping a tube to our finger and sticking it down his throat to manually stimulate swallowing.  It took a week of that before he started to swallow on his own, from a bottle.

It was a month of gradual steps, weekly hospital visits and tense weigh-ins before he finally developed the ability to nurse, finally starting putting on weight and we were able to move on.

So when I say I hope you can eat...  this is why.  I want to spend your first days and weeks in our family enjoying the long awaited wonderfulness that is you.  Figuring out how to be a family of four.  Not sobbing from pain, not worrying if you're going to be hospitalized from dehydration and weight loss, and not separated by plastic tubes and shields.

Sleeping was just as rough, though in different ways.  Bear couldn't fall asleep unless he was nursing.  He couldn't sleep unless he was physically lying on one of us, and he couldn't stay asleep if we laid him down.  We took turns in the rocking chair to keep him moving.  Our salvation in his early infancy was a vibrating bassinet loaned by a friend.  For the first time in weeks, we both slept lying down in bed.

Bear, December 2007
Vibrating bassinet = Best. Invention. Ever.

As he got older, sleep got harder.  While other parents were putting sleepy 6 months olds in their cribs for full restful nights, we were still experimenting with ways to get him to sleep at all.  It generally took vigorous rocking plus music playing plus me singing lullabys until I was hoarse... in short, an exhausting cacophony of sensory input.

It wasn't unusual for it to take up to 3 hours of this to get him to sleep.  And it wasn't like he had napped too much during the day - until we figured out that he needed blackout drapes, he barely slept in the daytime either.

And when all that finally worked... he generally woke up every 1-2 hours. Pretty much every night. For two years.  He's 4 now - and while it is a whole lot better - rarely a night goes by he isn't up at least once.  By the time he was 3 we were so worn down spending an hour or more in his room every single night trying to get him back to sleep we no longer protested that he worked out how to wander down the hall and crawl in between us.  He goes back to sleep. He's kicking us and hogging the blankets and mumbling in his dreams and we're often awake for the rest of the night... but it still beats sitting up for hours in his room desperately trying to find the right combination of sensory input to wind him down.

Needless to say, I do not wonder what it is that aged me so much I stopped getting carded shortly after he was born.

So again, I say I hope you can sleep... for your sake and ours. Because we want you to be happy.  And to enjoy growing up with your sweet, snuggly, hilarious big brother who can't wait for you to join us.

That being said... it will be all right if you can't.  It will be hard, but we'll make it work.  Because we've been there, done that.  We're better at it now.  And we already know who to call for help.

Love,
Mommy

3 comments:

  1. Oh WOW, that puts so much in perspective. You deserve lots of hugs and pats on the back for getting through all of that. I wish you luck with your new baby!

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  2. ::HUGS::

    I can relate to so much of this. Ash was born before he had a suck reflex at all. We had to train the reflex while he was tube-fed. Even once he could technically eat on his own, diet was a lifetime struggle, and creativity combined with supplements was all that kept him from needing to have a G-Tube put in when he was no longer even a baby -- although on a few occasions, he came dangerously close to lethal starvation and dehydration before things turned around OR could be done. At six and a half, it's not over for him yet, although he's made major strides over the past year and a half.

    And sleep? That was another lifetime struggle, only mostly resolved over the past year. Ash had such bad colic, combined with an intolerance of the iron we couldn't avoid giving him since he was also born with hemolytic anemia, combined with a preemie body full of so many raging infections that he'd form blisters from his body's desperation to push infection out....it was so bad, he literally looked like a pod of violent alien spawn were trying to push and claw their way out of his torso. Even specialists had never seen anything like it. The only thing that took Ash's pain from excruciating down to just extreme was being in constant motion, against a warm, real body, 24/7, for MONTHS. No combination of vibration, fake-body props with warmth, breathing/heartbeat gadgets, swings, etc., were enough. Even with all this, he went through periods where he would scream for 7 hours straight, pass out for 10min, then go again, with the only pauses being to refill his lungs for another scream. It was a long time before we got as far as the need for 100% blackness combined with extra tactile and auditory input not even being moot.

    I pray for you and your children....pray for health....pray for the ability to eat, and to sleep. Yes, yes I do.

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  3. Holy freaking crap. I cried. I don't like to cry. But I went back to the time when I was SO worried about my unborn son, who was going to be 21 months younger than his brother with autism. When you talked about sleeping, I think that was the thing that I worried about the most.

    Casey did not sleep. Not ever. He'd only sleep WHILE he was nursing, and I had a 13 month old to chase after. He was connected to my boob full time, and I was going insane. You are a much stronger person than me. I gave up. We put him on the bottle at a month in hopes he would sleep. He didn't. Finally, when he was six (SIX!) we HAD to put him on a sleep aid. I couldn't handle it anymore. He couldn't, either.

    It's scary. It's SO scary. I remember looking at my newborn and every time he'd fuss or scream or anything I'd think, "Oh crap! He's got autism, too!". He doesn't. He's insane. But not autistic.

    It's not wrong or selfish to not want this for your unborn son. It's absolutely not. No parent wants their kid to have to go through that.

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