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My Sister's Question Made Me Reevaluate Our Special Needs Life

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I used to think that once I had a name for all of the rare conditions that affect my children, somehow everything would be all right. I guess I thought that if we had a diagnosis, maybe we could then find a cure or a treatment and fix the issues and then move on with a more typical life.

In the early years of motherhood, I was like a medical detective, pouring over scientific research studies and Googling the names of genetic traits and weird medical terminology I’d find on my kid’s radiology reports. It was like a big virtual crazy game of “Medical Clue.” Only rather than it being Professor Plum in the library with the candlestick, it was more like Chiari Malformation in the forum magnum with the disrupted cerebral spinal fluid flow. I spent countless hours researching online trying to find out who, what, where, when and most important, why? Why was my first child born so small for gestation and with multiple congenital anomalies? Why did she only have a two vessel umbilical cord, and why did the placenta not form properly? Why did I develop severe preeclampsia and HELLP syndrome, which resulted in my son needing to be delivered at 28 weeks gestation to save my life and also his? Why did both of my babies have gross motor, fine motor and speech and language delays? Why did both of my children lose hearing early in childhood? Why did they have chronic pain, headaches and what seemed like random neurological symptoms? Why, why, why?!

And one day, a couple of years ago, I was venting about all our family’s medical challenges to my wonderful and supportive sister. Like usual, she let me ramble on about how unfair it was that we had to spend so much time in hospitals and doctors’ offices and how difficult it was to tell one of the kids they would need yet another surgery. And I said something like, “It just sucks” and “I just want to know why us? Why my kids?  Why do they have to go through so much bull sh*t?” She is the quiet sister — me, not so much. After I was done raging, she calmly and compassionately asked me this question, “How will knowing why help?” 

At first I was a bit surprised she would ask me such ridiculous a thing. After all, she’d been there with me through the neonatal intensive care unit (NICU) stays, therapy appointments and surgeries. And there were many days when she sat and cried with me in person or on the phone as I navigated the scary world of special needs parenting. And now she was asking me, how will knowing why help? I thought to myself, “Really? How will knowing why help? What in the hell does she mean by that? I have to know why!” And then I thought about it. I began to ponder the answer to this suddenly urgent question. Please do not get me wrong — knowing “why” is helpful for so many individuals dealing with illness, especially when it comes to identifying lifesaving treatments and therapies. Believe me, this I understand. But in my family’s case, how would knowing “why” be of help to my children?

And then it hit me! Maybe I needed to stop focusing on why and focus on how. As in, how are we going to live our lives going forward from here? How will my children live happy and productive lives if we’re always searching for the nameless faceless monster? Yes, why matters but not nearly as much as how.

Two years later, we’re still working on how to live our lives with chronic illness. But sometimes why still rears its ugly head. It’s likely that we’ll never know all the details as to why our family has so many medical challenges. And that is OK. Let me repeat that it… It’s OK. Because knowing why will not magically solve all of our problems. But deciding how we’ll live our lives between the times of diagnosis, medical crisis, doctors’ appointments and surgeries will make a huge difference.

So how do we do it? It’s not always easy.

But we try not let our medical challenges define us. Instead we focus our energy on living meaningful lives, despite the challenges. We try to do it by simply enjoying life and looking forward to the things that typical families do, like going on vacations (between surgeries and doctor’s appointments) to places like Grandma and Grandpa’s in Florida and to see family who live in the majestic and beautiful world known to all from the great state of Michigan as simply, “da UP, eh” (Michigan’s Upper Peninsula). But vacations end, and then real life begins again. And let me tell you, if you think it’s difficult to go back to work or school and real life after a wonderful vacation, try returning to a world which includes multiple brain surgeries. Talk about a reality check… and one that sucks beyond the telling of it some days. Hey, at least we had the vacation!

Living with chronic illness is not always easy for our family and for me as a mother. But I’ve learned a few things and made some choices which have helped me along the way. I’ve consciously made an effort to stop spending so much time searching for the why online. The Internet is a great resource, and it’s helped me many times during this journey, but it’s easy to let it suck you in, and before you know it, hours and days can be lost chasing a ghost that may or may not exist. I’ve also limited my time spent in online support groups; sometimes, they’re not really all that supportive. Some groups become places for people who thrive on drama. I try to just enjoy the small moments in which we’re all just doing something “normal.” I value the days spent planting tulip bulbs and weeding and watering our little flower garden or making homemade cookies more than I do anything else. Mostly, I’m just thankful when we’re not spending time in a hospital, doctor’s office or IEP meetings for special education school services.

My children are now 14 and 11 years old, and I think they have a better sense of how to live this life with chronic illness than I do at times. Maybe it’s because this is the only life they’ve ever known… and for them, it is normal.

To them, it’s just how it is and how it’s always been.


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Originally published: March 27, 2015
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