I read an interesting article today. A woman, who has a son with cerebral palsy, was addressing a group of eighty or so physicans, speaking from the parent perspective of what it’s like to raise a child with special needs. There was a Q & A session after her talk and one of the doctors asked an intriguing question. It’s actually a question that could apply to any parent, but in some ways is more pointed be posed to a parent of a child with disabilities.
The question was, “What do you wish you had known, or had been told, when your child was born – and what would advise someone just starting out on a similar kind of life to yours?”
As parents to be we get all kinds of advice from all kinds of different resources but I can say from pre-parent experience, no single piece of advice I received could have prepared me to the parent of a my son. I didn’t have any friends who had children with special needs. I knew a few people who had children on the spectrum, which is its own set of challenges, but none with kids who had involved physical needs like Cole.
You jump in. It’s terrifying.
Cole was in the NICU for five weeks. During the first couple of days, we relied on the tremendous NICU nurses to guide us. Once he was at a point where we could handle him a little, albeit still connected to a barrage of tubes and wires, we were encouraged to hold him, and even change his diaper. It was pretty crazy but at the same time, it was what new parents should be doing so it felt empowering and connective.
The NICU nurses were the ones who taught me how to use the hospital grade pump so I could express milk for Cole. (Fearing for the worst, the hospital breastfeeding coach avoided me so I initially thought I wasn’t going to be able to provide breast milk for him). Knowing he was being provided good nourishment made me feel connected to him too, even if he was receiving by tube, not boob. And it too felt like something typical moms would be doing.
We were fixtures in the NICU those five weeks. We’d go home to sleep and shower and return to spend the day with Cole. During those weeks we learned a lot about him and about some of the considerations we had to make when he came home. The NICU nurses armed us with confidence that we could manage this on our own and a “just do it” kind of ethos that we still take to heart.
We got home, we fell into a crazy routine between tube feedings, pumping, and trying to sleep, my husband and I moved through the next six months until Cole was sleeping through the night and on a more regular patterned feeding schedule. I stopped pumping, having well stocked the freezer with enough milk for a few additional months…and we started to breathe. We were parents. We had an amazing child who brought joy to our lives.
I don’t know if any specific advice could have actually prepared me for being his mom had I known he would be different before he was born. I feel like knowing this would have made overthink everything, rather than letting things flow organically.
If I were to give someone who is starting this journey advice, it would be to breathe, listen to your heart, and to love unconditionally. Embracing the joys makes the sadness and fear fade.
Throughout my journey, one gift I’ve found more valuable than anything is the community we’ve built. There’s great collaboration, advice, and support. More than anything, there’s understanding, acceptance and love.
I love your brain 