Parenting A Child With Special Needs-Our Story

The day we found out there was something “wrong” with our daughter, was the day our special needs parenting story began. I’ve shared the challenges and triumphs of raising a child with a chromosome disorder on my blog (http://www.foreverinmomgenes.com), in Facebook forums, in mom groups over coffee/cocktails, and with random people in line at the grocery store. I’ve always been ready and willing to talk about life as a “special needs mom.”

Though lately I’ve contemplated whether or not to continue sharing this particular storyline. Is it even my story to tell anymore? I mean, my daughter is nearly a teen. Also, without the trauma and drama from the early years, does anyone even care to follow along?

But then I remember that these stories aren’t only mine. There are many parents who read something I’ve written and then message me to say they’re grateful for the information. They tell me a bit about their child and share their grief—and yes, there is a definite grieving process that happens when you learn your child will have medical or cognitive challenges. Parents share their concerns and ask me questions. They want to know what happens next and most of all, will it be okay?

Our story is somewhere around the beginning of the middle. It’s a comfortable place to be. I feel like I have a handle on our daughter’s medical needs and I’ve learned to deal with the worry (for the most part). I’ve also figured out how to manage the self-doubt that comes with looking after a child who will depend on you for everything, now and beyond childhood. I used to wonder if I could do it. Over time, I’m learning that I can. But man, in the beginning, I wasn’t so sure.

When we got the low down on the developmental challenges ahead http://www.foreverinmomgenes.com/when-your-child-is-diagnosed-wi/, my husband and I were a mess. We staggered through the stages of grief and took turns being the strong one. We alternated between leaning on friends and family and shutting them out.

Our tiny girl had severe feeding issues. She was fed through a tube and spent months in hospital with “Failure to Thrive” highlighted on the chart hanging from her crib. As a toddler violent seizures nearly took her life. We were paralyzed with fear and consumed by the uncertainty of parenting a child so fragile and so different from our healthy, “typical” son. I found comparisons between our daughter and other children her age to be particularly painful. I even experienced episodes of rage toward the “normal” families I saw at the park and at the mall. Did they even appreciate how lucky they were to be ordinary??

But as time went on, and as we learned to appreciate our beautiful girl for everything she is, instead of everything she is not, things got easier. There are still concerns about the future—like what happens when we’re gone? Will she be okay on her own? Will she find someone to love? Will she be loved? And the list goes on. But this is life in the middle of a special needs parenting story.

Back in the beginning, we had so many questions and doctors had very few answers. I hit the Internet looking for information. I reached out to other parents who were further along in the story. I hung on every word of each post they shared. I analyzed their Facebook photos looking for clues. Were they happy? Was life okay despite the challenges? I took any glimmer of “normalcy” as an encouraging sign that we would be able to create a happy calm amidst the chaos.

According to her faulty genetics, our daughter shouldn’t be able to do all the “normal” things she is doing. She’s kind of a miracle. Of course, her challenges, and some are significant, will put limits on her independence and narrow the paths available to her, but this kid is the happiest, kindest, most honest and earnest soul. How lucky we are to know her.

So right now we sit here content in the early middle of this story, grateful and hopeful. I’ll continue to share our story in blog posts, and Instagram photos, and the occasional motivational quote… because I know what it feels like in the beginning. I won’t sugarcoat the difficult parts or pretend that life is perfect. But I will shine a light on the positive, inspirational, and hilarious moments, and there are many.

I hope wherever you are in your story, you remember to share it with someone from time to time. One of the best parts about telling parenting stories, whether your child is typical or atypical, is being able to share what we’ve learned along the way with others who are walking this path a few steps behind us. Perhaps something you share just might be the encouragement they need to keep moving forward.

Author - Lisa Thornbury