A Letter to my Former Self, the NICU Mom
Hey Lady! It’s me…You!
Weird I know, but listen up Buttercup because I have some important things to tell you.
You’re leaving the NICU today after the longest 143 days of your life, but you already know this might not be the end of the ‘hospital life,’ and you’re right.
I’m going to let you in on a little secret though…Carter will be physically okay!
You’ll have some bumps in the road but nothing as major as the surgeries he endured in the NICU. I promise.
You’ll find the perfect pediatrician. He’ll listen to you.
He’ll never undermine your concerns, and he will truly cherish and admire Carter as much as a doctor possibly could.
He’s going to bring something up one day and I don’t want you to freak out, ok?
Trust me, it’s something you can’t fight…so save yourself some heartache and learn to ‘Lean In’.
Remember when you hoped and wished that your son would just survive? You got your wish, but it came with an attachment. Autism.
It’s going to be okay, Autism won’t make his heart stop. You’ve seen him flatline…autism doesn’t have shit on that.
That’s what you’ll tell yourself anyway…and it helps. I promise.
Don’t lose that thick skin you earned in the NICU. You’ll still need that.
Be patient. Be stern about Carter’s care, but not rude.
Learn to say NO more often.
NEVER let a therapist persist until Carter has a meltdown…don’t let it get that far. You’ll never forgive yourself. I promise that, too.
Read! Read everything legitimate that you can, it’s already proving to be useful.
Find other parents like you.
Don’t let anyone write off your concerns under the umbrella of ‘something autistic children do’. Trust your gut.
Be patient with your husband Andrew. He loves you. He just doesn’t process things the same way you do, and this isn’t his first ASD rodeo.
He’ll do more than his fair share, and he won’t let you down.
Don’t let him take on too much, though. He’ll run himself into the ground trying to take care of everyone.
He’s the best Dad. I promise.
Go train Jiu Jitsu, NOW. Don’t put it off. Just go.
The PTSD will be gone before you know it, and don’t feel bad about having it. There’s not a soul in the world that could spend 5 months in a NICU and walk away with no affects.
You’ll find a jiu jitsu home, and make some unexpected friends that adore Carter. They will become a part of your family. I promise.
Carter’s almost 3 now and a wild little man! Spend time with the girls while Carter is a baby.
Toddler-hood is quite hectic and you won’t have the time that you think you’ll have.
One day, Bailyn’s ‘quirks’ are going to hit you like a ton of bricks. You’ll realize that her and Carter probably have more in common than you think.
Nevaeh is so smart. She has known all along, but didn’t understand that there is a label behind her sisters quirkiness, a label that we still avoid using for some reason.
She was Bailyn’s voice for years before you came along, and she understands more than you give her credit for. Listen to her.
Even though you didn’t give birth to them, you’re pretty much the only Mom they have and they love you just as much as you love them. I promise.
You’re going to feel robbed, and that’s okay.
You’re going to have your heart broken over and over when Carter struggles to do some of the simplest things.
You’re going to cry…a lot. That’s okay too.
Go ahead and grieve a little, but don’t stay at the pity party for too long.
You’ll come to understand that even though this is hard for you, it’s even harder for your baby boy.
This, is my saddest promise.
Carter will laugh and play and smile. He’ll even have staring contests with you, eventually.
You and Andrew are going to be his voice because he won’t seem to be able to find his for a while (we’re workin’ on it). You’ll both advocate and do it well.
Every milestone will make you ‘ugly cry’ with joy, just as it always has. I promise.
Try not to get upset when someone says ‘at least he’s alive’. I know it’s a big statement, but in your case it’s true.
Never forget the time you spent in the NICU wishing for the miracle that you did get. Always be grateful, and never stop pushing forward.
Don’t let anything define Carter…except Carter.
He’s truly amazing and as impossible as it may seem right now, you only love him more as time goes on.
I know you’re thinking “there’s no way I could possibly love him even more than I do”, but you do…And it’s beautiful.
I promise.
Love, You
Written by, Jessica Riehm
Jessica and Andrew live in a small town in Minnesota. They have 3 children. Nevaeh (13), Bailyn (12), and Carter (almost 3). Carter was born at 24 weeks gestation, and was diagnosed with severe ASD just shy of his second birthday. To see Carters beginning of life story, go to https://www.facebook.com/
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