I'm a Little Lost as a Special Needs Parent

It’s been almost two years since my husband and I started our journey as parents to a child with special needs. Back then, we weren’t even using the words “special needs.” We just knew our baby girl was delayed and were hopeful she would “catch up.” Eleven months of blood work, MRIs, EEGs, ERGs, genetic tests and lots of therapy later, our daughter was finally diagnosed with a rare genetic mutation. The good news: We had an answer. She would always be delayed, but she would make progress. The bad news: It posed about a thousand more questions. Questions that, to this day, are still largely unanswered because there are only a handful of others with our daughter’s same mutation.

In my search for answers, I’ve eagerly devoured many articles written by other parents of children with special needs. Usually, I come away from these with a feeling of genuine comfort. But sometimes the doubt creeps in. How do these people have the answers and I don’t? I’m a Virgo. I crave order and organization, and having so many unknowns gives me anxiety. 

Here’s the truth I want to share with you: I want to be the best possible parent to my daughter that I can be, and I don’t know how yet.

And that’s OK. Here’s why.

No one has invented clones or robots yet. There are simply not enough hours in the day to sort out these complicated feelings. My husband and I work full-time and, in addition to our daughter with special needs, we have a very spirited first-grader to raise. Forget about “me” time. Forget about hobbies. It’s work, eat, family time, clean up, more work. On top of that, there is an unending pile of research, paperwork and emails relating to my daughter’s rare genetic disorder. 

Science is hard. Parenting a child with special needs forces you to learn a whole new language overnight. For us, it’s been a crash course in genetics. And if you’re like me and don’t easily understand genetics or complex medical terms, you may find yourself reading the same things over and over again. Every couple of months, I have to re-learn what all the terms surrounding my daughter’s rare genetic mutation mean. 

You never know when the grief is going to hit you. And it’s surprising when it doesn’t. One day, while waiting for my husband and daughter to come down a large slide, a little girl with the exact same brown ringlets as my daughter slid down. For a brief second, my heart caught in my throat as I thought my husband pushed our daughter down this giant slide by herself. The second passed, and I realized she was someone else’s daughter. She ran away, and my husband and daughter slid down. We watched this typical 2-year-old for a moment, marveled at the similarity of her curls and then didn’t give the matter a second thought. 

I’m not sure why coming face to face with the typical version of our daughter didn’t bother us, but a recent barrage of Facebook updates of younger babies surpassing our daughter in milestones have been bumming me out. “It is what it is” has become our go-to mantra.

“Comparison is the thief of joy.” I’ve encountered many parents who seem like they have it all together, or they know about something I’ve never heard of before. I admit it sometimes makes me panic. How can it be there are still things I don’t know when I spend almost every free moment scouring my Facebook groups or networking with other families? I have to remind myself, the people who seem like they have it all together probably have been doing this longer, have had more therapy or maybe I just happened to encounter them on a really good day. 

I’m still fairly new to this journey, and it’s important I cut myself some slack. 

It’s OK if I feel like my daughter’s best advocate one day, and the next day I want to crawl under the covers to hide. 

It’s OK if my to-do list is a mile long, and my house is perpetually messy (that one’s for you, hubby!). 

It’s OK if I don’t know what I’m doing yet.

All that matters is I’m trying, so I’ll get there.