Some might say we’ve been handed a less-than-stellar parenting hand. Trust me, before we got pregnant with our oldest, I didn’t intentionally sign up to have a micro-preemie nor an autistic child. And I know well too many parents who live a much more difficult parenting road, some too painful to even think about. So I don’t complain, much. Are our lives easy? Nope, but there’s never a promise of easy when you start down your life path. You deal with the hand you’re dealt. That’s my take anyways.
I suppose we did have a choice. We could have told the doctors to not take any extraordinary measures to save Big Man. We could have quietly let him pass, fears of what his future might hold taking precedent over his chance of survival. We could have walked away. We could have chosen not to fight. But I knew him – I knew his fight, even before I saw him face-to-face. I’d felt him within me, I’d heard his strong, fast heartbeat. I’d seen his tiny arms and legs on the ultrasound screen so many times. I knew long before he took his first breath we would fight as long as he had fight within him. We didn’t know, even when we brought him home from the NICU, what his future might hold, but honestly, do you ever know what your child’s life is going to be? Life holds no guarantees. We took him as he came. We loved him, we watched him, we cried, prayed, laughed. We continue to advocate for him, raise him, fight with him and beside him.
The day (and admittedly for a few days afterwards) we found out we were pregnant with the Princess, I cried, so not ready to face pregnancy again so soon after Big Man’s birth. He was 3.5 months old. Our babies would be just a year apart, if I made it to full-term this time. I fretted, I worried, spent days full of anxiety, so sure we were going to end up back in the NICU again. I eventually reached a place of knowing our family was going to look a bit different than I’d planned, but we were blessed. And oh how I fell in love with that little girl.
I recall so clearly the drive home from the psychiatrist’s office the day Little Man was diagnosed autistic. I called my friends. How would I do this? Why was this happening to him, to our family? What had I done wrong? Why did my baby have to suffer? A wise friend reminded me my baby was still my baby – a diagnosis did not change who he was. I would have to fight for him at times, I would have to find the strength inside to deal with the hard parts. I would go to the deepest depths when my nine-year-old told me this was too hard and he didn’t want to live anymore. I’d have to remind myself all the amazing things he’s capable of when it seemed all I was hearing was what he couldn’t do.
I guess I could have walked away, said this was too hard, too much, could have chosen not to fight for him and his needs. But I never saw that as an option. I’m not amazing. I’m not extraordinary. We aren’t special because we continue to parent him. We deal with the hand we’re dealt. Our hand may not look like yours, but you take what you’re given and you deal, or you don’t. We just never imagined there was a choice for us, never considered any other option than loving our babies.