Controlling What I Can Control
On day three of Harbor’s life, he cried all day. He nursed and fussed. Nursed and fussed. He didn’t sleep for nearly six hours.
At 3 pm, I broke down.
Not because of exhaustion. Not because of the stress of nursing.
Solely out of fear.
I said the words aloud that I feared the most, ‘Jamie, he’s autistic. I know it.’
Jamie, the one who is always calm, always level headed, never emotional, said, ‘no he’s not.’ But I could see the fear in his eyes.
At 5 pm, Jamie broke down.
The fear set in. We both flashbacked to Cooper on day three of life.
We had just come home from the hospital. It was as if a switch flipped. Something was wrong. But no one believed me. They thought I was just a new mom.
We knew something was off. Or different. Or not quite right. Or whatever politically correct term I’m allowed to use.
He fussed for the first three years of his life. I am not joking.
He never slept longer than 45 minutes at a time. He struggled to nurse. To relax. His anxiety came through even as a baby.
Our son is now seven. He is autistic. He is what you call severe. He is nonverbal. He will require life long care.
He is absolutely amazing. We have created a beautiful life for him. We have found our groove. We are in a good place.
Throughout my whole pregnancy this time with our third baby, I secretly told myself, never saying it aloud, that I would know by day three if my new baby was autistic.
I know that sounds ridiculous. Even now as I write these words. How could I really know anything by day three?
But, we know what we have experienced. Fear controls so much of how we react.
Cooper was hard. Our second was easy. Both from the very beginning.
We didn’t decide to have a third baby over night. We didn’t make the decision lightly. We took it very seriously. Conversation after conversation. Debates. Arguments. So much worry and fear. So much desire to grow our family by one more.
As I held my third baby on day three, I cried those post-partum tears and I pictured life with two autistic children. I imagined how we were going to do this. I blamed myself. I thought about Sawyer having two disabled brothers. I thought about the fight for services. The unknown. The really hard years. I thought about forever.
I let every single emotion wash over me.
The tears flowed so fast it was hard for me to breathe. I could not tell which parts were baby blues, fear, reality, etc.
I just knew what I knew in that moment. And that was fear.
And then Harbor nursed one more time and went to sleep. And slept. He has been perfect ever since. He nurses. Sleeps. Nurses. And sleeps.
He is by far the most relaxed, amazing baby I have ever experienced.
And yet, the fear is still here. Underlying.
Yesterday, I brought him in for his one-week check-up. He is back up to his birth weight. He is eating. Content. Sleeping three hour stretches. Perfect. And besides some milk supply issues, we are both doing very well.
As my doctor asked if I had any questions, I could feel the fear rising up.
I thought about Cooper at home the past few days. Hoarding. Pacing. Anxious.
Books, photos, scraps of paper, DVD’s. Lots of crawling. Grunting. Bizarre, loud sounds. Throwing. Stimming on sounds.
He is my son. My whole entire world. My life.
I thought about how before Harbor was born I thought we would all have to adapt to life with him. I was wrong. We are adapting to Cooper as he adapts to life with Harbor.
Autism. Always the hardest part of any situation.
I could feel the tears welling into my eyes.
The doctor went through the first visit checklist. Vaccinations. Circumcision. Low milk supply. Supplementing with formula.
I was bouncing Harbors in my arms. I was sweating. I was exhausted from being awake all day. I had milk stains on my shirt. My nipples felt like they were on fire. My hair was dirty. I knew I had bags under my eyes.
I was every bit a new mother. And I dropped my fake, always have my shit together, smile. The one I have perfected.
The words came pouring out. The ones I am too afraid to say to Jamie.
I told him, ‘I am scared. I can’t do severe autism again. I just can’t. I swear Cooper is getting worse. More severe. Part of me feels like autism is inevitable and I am powerless to stop it. It’s out of my control. I don’t know if I did enough when I was pregnant. I’m scared. Scared that he is going to be severe like his brother. Scared of the future. Scared to let my guard down.’
I told him I wasn’t expecting these emotions. This fear. That I buried it way down deep during my whole pregnancy. Knowing that it doesn’t matter what happens. We will love and treasure this perfect baby just like his brothers. Knowing that we are rolling the dice. Knowing what the outcome ‘could’ be.
He responded with, ‘Kate, you need to stop. You can’t control this. And we don’t know what is going to happen. We don’t know if Harbor will have autism or not. So just control what you can control and let the rest go. Relax.’
We talked for 15 minutes or so. He listened to me. I said my fear aloud, without judgement. I just needed to say it out loud. I just needed to say how scared I am.
He listened. I breathed a sigh of relief.
And then I packed up Harbor and off we went and gave myself a pep talk in the car. One that I have perfected over the years.
I refuse to worry this baby’s life away. To compare. To hold my breath. I want to enjoy every single minute.
My goal is to acknowledge the worry, not bury it, and remember I can only control what I can control. I have to remind myself of that daily.
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This is beautiful, Kate, and so honest and real. The emotions that come along with being a parent are so huge they are just impossible to imagine before you become a parent. That includes the love as well as all the negative stuff–fear, sadness, worry. I hate those negative feelings and I hope you mostly just feel the good ones. Those boys sure are lucky to have you and Jamie.
Kate, please check out the Nemechek Protocol. I agree with what your doctor said and what you reiterated: don’t worry this baby’s life away. He is a precious gift, here for a purpose, and I truly believe he is going to be totally okay and that one day you will be reflecting on your early fears with Harbor from the vantage point that he is totally fine. That being said, I have a nonverbal ASD seven-year-old. We started the Nemechek Protocol 3 1/2 months ago and my son has begun actually repeating words in these 3 1/2 months. I never, ever thought it was possible. We still have a LONG way to go, but I ask him if he wants something and he says “yeah” now. Before it was radio silence or screams. If for some reason there are ANY concerns with this wee babe, the sooner you start a child on the protocol the better the outcome. My seven-year-old has a lot more healing to do than a newborn or infant has to do. Years and layers to peel away. But, I’m telling you, just try it. Don’t worry about trying it now when you have so much on your plate. But, sometime soon, try it for Cooper and keep it in your back pocket. None of us is perfect. Don’t blame yourself for not doing “enough”; you’re doing as much as you humanly can. Harbor knows his mama’s anxiety and it could well be that he was feeling that anxiety and it was causing him not to sleep/relax. You’ve worked so hard for your beautiful family; these are the golden years and you cannot re-live them, so just enjoy these three absolutely adorable children. Remember that some families have multiple children with disabilities and THRIVE (although I don’t think you will be one of them). Look up This Gathered Nest; Angela has 7 kids, one of whom has DS. Another is adopted from a war-torn country. She is a fighter and so are you. Surround yourself with positive pictures, videos, and experiences of families that fall outside of whatever the “box” is. Pray. Pray every night. Not with fear, but with faith/peace. We involve my NT son in praying for his seven-year-old brother. Every night, we lay hands on my seven-year-old and my NT son prays the same prayer: “Dear Jesus, please help my brother to talk. In Jesus’ name. Amen.” We pray it every night because hope is SO powerful that it makes living in fear next to impossible. Even if the worst possible circumstances come your way, God will give you the tools. I pray fiercely that those circumstances will not come your way, but this life is short. Sometimes the best therapy is letting go. Admitting that you can’t give your child every single therapy and every single treatment but you can do something totally custom that NO OTHER kid in this world gets: your unique love as their mama. And nobody else has access to that intervention. Just those three precious three boys. Lots of love to you.
I’ve been reading your posts ever since I found out my 23 mo son has Autism. You are a breath of fresh air and I feel comfort in knowing someone else’s story. I can relate to your feelings so much!! Keep sharing. And thank you for being so honest. I don’t feel so alone.
I agree with the advice above. Please check out The Nemechek Protocol.