I made it through my six days in trendelenberg and pre-term labor by not knowing the real danger both Sam and I were in. I knew it was bad, but I intentionally kept myself as far from the details as possible. When the neonatologist came to talk to Peter about Sam’s survival chances, I turned inward and heard nothing. When Peter tried to talk to me about the choices we needed to make, I told him I couldn’t be a part of that decision. What I didn’t know, wouldn’t hurt me or Sam.
In the NICU, I employed the same tactic. I knew we were in for a long haul, but I never let the idea that Sam might not survive enter my head. There were a number of times when my carefully constructed wall of ignorance came crashing down around me, like the day the doctor told me that if things didn’t change it would be fatal for Sam. Even on the days when I was shocked into reality, I still chose the blissfully ignorant path. I liked believing that only good would come out of Sam’s birth. I liked my rose colored glasses, and I wouldn’t trade them for anything.
Once Sam came home, I felt I didn’t really have anything to be ignorant about. Sam was perfect. He was growing like a weed, he was hitting every milestone a mom could wish for. He earned his name of the Anti-Preemie. I had down days, where I would convince myself that there was a problem – that Sam was showing signs of Autism. This became my obsession. Everything became an indicator. Sam has chronic constipation… that can be a sign of Autism (who knew?!). Sam doesn’t always look when I call him – another sign. Every time one of our home health care workers visited I would ask them if they were seeing what I was seeing. Every time they would talk me down and tell me to relax.
Then, I really started to notice things. They were not big things, and on their own they sound like nothing. But when you add them all up, they started to sound like something. I voiced my concern to Sam’s OT, and this time, as opposed to talking me down, she told me she had concerns too. So, we trotted down the hall to the speech therapist and had an evaluation. And just like that, I had a trained professional telling me that she was concerned that Sam was showing major signs of Autism.
The only way to definitively get a diagnosis is to see a developmental pediatrician. Because of Sam’s early birth, we have been followed by a specialist from Day 1. In fact, we just had our two year evaluation with the High Risk Follow-Up Clinic on September 20. I called the clinic after our speech therapy evaluation to see if they wanted us to come back. Sam had done so well at his last visit, we were not supposed to see them again until Sam was three.
Three weeks had passed, and I heard nothing from the High Risk clinic… until Friday. Then I get a call saying, “We need to see Sam next week”. I have no idea what the urgency was, I was too caught off guard to ask. I made my appointment and hung up.
Now, I have had a few days to think about this. Come Wednesday, I will have a much more definitive diagnosis on what is going on with Sam. I could hear that he is fine, and everyone should calm down. I could hear that he is most definitely on the spectrum and the future becomes even that more uncertain. Either way, I will no longer get to be ignorant.
So, here I am, asking… Do I Want To Know?
Amy Heinz says
Thinking of you all and choosing rose-colored glasses. May knowledge be comfort and power for you and Sam.
Also thinking of Sam, you and the fam. You are a direct hard-ass woman and I am certain that knowledge will give you clarity and help carve forward paths (whatever they may be). And I know this (knowledge) will make you, as well as the family stronger as a collective—which almost seems impossible, because you are the strongest mother and family I am grateful to know as friends. Let your love for Sam guide you Wednesday and beyond.
Just came across your blog and wanted to say that from the few posts I’ve read you seem like an incredibly strong, brave and determined woman and an amazing mom to Sam. I too have an ex-24 weeker (born at 24+5) who is 8 weeks adjusted. I just began our blog. Reading through your site and knowing so many of my “crazy” emotions are not actually crazy and finding hope that we will be ok has been so healing for us. Thank you and I look forward to being along for the ride as Sam grows bigger/stronger and conquers the world!
Hi there – and welcome – and congratulations on your own miracle. This preemie parent club is a tough one to belong to but is filled with some of the most amazing people!