We celebrated my son’s 4th birthday a few weeks ago and I’ve been reflecting on what a ride it’s been thus far. When he was born, we had no idea that he had cerebral palsy—that a congenital viral infection had damaged his brain and our parenting experience would be significantly different than what we had thought.
Over the past 4 years, we’ve learned just how resilient he is. This child has been through 2 major surgeries, countless procedures, a thousand doctor’s appointments, and hours of physical therapy. The sheer volume of medical stuff (for lack of a better word) would make anyone else bitter and angry, but the reality is that he doesn’t know the difference.
This is his life and he’s happy with everything.
Therapy is part of his daily routine, and while I might look at therapy as a chore, if we skip therapy he wonders what the heck is going on because it’s part of his routine.
I was thinking today about how my son only wants to interact with those who give him positive feedback and are kind to him. At first that made me sad—maybe he’s starting to get hardened to the world by not wanting to interact and be friendly to everyone. But then I realized that him knowing who he likes and who he doesn’t is just part of growing up.
He’s not a baby anymore and I have to recognize that he’s developing preferences. My role as his parent is becoming less of a protector and more of a facilitator—a translator for him to express his ever-evolving thoughts and feelings.
What I’ve learned about myself and about parenting is that this is hard. Really hard. Being a parent is hard in general, but being a parent of a child with disabilities is even harder. The world is built for and by able-bodied/minded people and there are a lot of situations where the world doesn’t necessarily know how to handle a child or an adult with disabilities.
I’ve also learned that I’m pretty tough. I’ve learned that my wife and I are a darn good team capable of doing anything. I am capable of fighting with insurance. I’m capable of having detailed, scientific conversations with doctors to advocate for my son’s needs. These are all abilities and skills that I didn’t know that I had 4 years ago, but I know that they’ve become strengths of mine.
I have my son to thank for that.
The past 4 years have been different, but they’ve been beautiful in their own way. They’ve been challenging, rewarding, stressful, and exhilarating. Being a dad to a son with disabilities has made me a better dad in general.
Four years. No idea where the time has gone, but I can’t wait to see what the future holds.
A good life needs to include things that are important for the person as well as things that are important to the person.
What happens if traditional respite doesn’t work for us? How do we, as caregivers, still find a way to recharge? Sometimes respite looks very different from one family to another.
Breast milk is liquid gold and everyone is aware of the many benefits it provides babies. There are a lot of moms that either can’t produce any, enough, or maybe their baby cannot tolerate breast milk. These moms are doing the best they can and we need to stop shaming moms for not breast feeding and support each other.