Parenting a Child with Disabilities: A Mom’s Unconditional Love
When we began the process of adoption for our second child, we had to go through several pages, checking yes or no, on disabilities or differences that we felt comfortable taking on. The list included things as simple as birth marks to things as impactful as missing all four limbs. It felt like such an ugly process - like we were using check boxes to determine who did or did not belong in our family. The form is intended to make sure you’re not in over your head, since adoption already comes with extra parenting hurdles. When we consider any of our children, we know that there is no disability that could make us love them any less. That doesn’t mean that certain things won’t require more work.
We ended up in the “healthy child” adoption program, because we weren’t sure what to do with some of the bigger needs, like lifelong incontinence, and we didn’t have a home that was set up for mobility needs.
As it turns out, our form was meaningless because the universe had other plans. We were matched with a beautiful boy, perfect for our family. It wasn’t until we returned home that we learned that he couldn’t feel from his knees down, had spotty sensation through the rest of his body, would never walk independently, and would be incontinent for life. Sure, we were unprepared. But isn’t that true for any parent? No matter how many books we read or how much advice we seek out, we never really know what we’re getting into. That’s true regardless of ability levels.
The last nine years have been quite the learning journey, and I wanted to share some insights for anyone who may just be starting out.
All We Need Is Love
And food, and diaper changes, and sleep, one could argue, but in reality, even those most basic of needs come through love. All that to say, the thing you need most in parenting a child with different needs is what you already have. Every child’s most basic need is to be loved. That’s universal.
It Gets Easier
Do you remember learning to read? Probably not, but it was pretty hard. Learning 26 letters, with inconsistent sounds, figuring out their patterns and learning to make sense of words every time you needed to decode something - it’s a whole ordeal just to read the most simple of stories. Yet, here you are, reading a whole article without even thinking about how many letters you’re putting together. Even the most difficult of tasks become routine.
When the nurse first explained to me how to do a cone enema for my three-year-old, holding it in on the toilet and trying to remove it at the right speed and angle to get covered in as little feces as possible, I just wanted to curl up and cry. How was this what we’d have to do every day for the rest of his life?
It was really only a matter of weeks before we had a pretty smooth routine. In just a few months, we didn’t really even think about it anymore. It was just another part of the day - like putting on deodorant.
This is true of so many things that feel daunting - feeding tubes, traveling with heaps of gear, medical routines - you get so used to it that you don’t even think about it anymore.
Different Is the Same
We absolutely had to learn a new way of parenting with our second child. But, guess what. We had to relearn again with our third. Yes, differing medical needs add a new layer to figuring out development and connection, but so do personalities. Each child presents their own unique twist on the parenting journey. The best thing we can do is strap in and enjoy the ride.
Different Is Not the Same
Ok, while it’s true that we relearn with every child in every phase, that doesn’t mean that our journey is the same as other parents. It can feel absolutely isolating when no one understands our daily struggles and fears. It’s vital that you find a space where you’re comfortable expressing yourself without coming across as complaining and where you can celebrate your milestones with people who understand how significant they are in whatever timing they arrive.
You Can Do Hard Things
People will always comment, “I could never do what you do.” That’s not true. Everyone can do this. As parents, we do the best we can, one day at a time. That’s all, and that’s enough. We’re capable of much more than we give ourselves credit for. If you’re interested in diving deeper into finding your community or locating resources, check out this article!
Hasitha has written a beautiful article on her experience on traveling solo on my website. Check it out here: Traveling Solo as a Wheelchair User - Wonders Within Reach