Since this month is Epilepsy Awareness Month, I'd thought I'd let some of our friends share their story about how epilepsy has impacted their lives. I was going to write the first blog post for this month, but have since decided that it's better to put others first...
Our first writer is Heather, and this is what she has to say:
In the fall of 2009, Travis, our boys, Trav's parents and I were sitting around our living room. Some of us were playing Yatzee on the coffee table. Dakota was standing between the coffee table and the wall. He was wearing a blue shirt and shorts. His hair was still a mess from the night before. It was a Sunday. I mention all of this because the moment is so vividly implanted in my brain. Dakota did the same thing he'd been doing for MONTHS. A thing that was REALLY aggravating for a parent. He ignored us. His dad was getting on his case for being inappropriate during the game and he just IGNORED him. Like, literally turned his head and acted as though he couldn't see him, couldn't hear him. This was the third time he'd done it just that day. In fact, it had become a rather constant event. This time was different because my mother in law, Vic, saw him do it. As Travis reached out to turn Kody's head back toward him, my mother-in-law looked at my father-in-law and said "I think he's having a seizure". She then asked me how often he did that and I responded by saying probably 50 times a day or more. She told me again that she thought he was having a petit mal seizure. I reassured her that he was just being naughty.
After they left, I Googled it. My world shattered. I could do nothing but sit and cry. After reading about absence seizures (or "petit mal" seizures) there was no doubt in my mind that was what was happening to my baby. How in the WORLD could I have let this go on for months and months and NEVER give it a second thought. Monday morning I called our family doctor, who saw him Monday afternoon. It took no more than 10 minutes for Dr. Matzke to decide that we needed to see a neurologist immediately. On Wednesday morning, Trav and I sat in a tiny room as our son was hooked up to wires, laid on a table, and made to have seizure after seizure after seizure. He had so many seizures during that first EEG that I had to leave the room because I was sobbing uncontrollably and begging the tech to stop. By Wednesday afternoon, my baby boy was diagnosed with Epilepsy.
So many people ask me how we can handle dealing with a "sick" kid. I always wondered, when my kids were younger than they are now, how people dealt with kids that have any type of medical, physical, or emotional issues. I always felt so blessed to have very healthy babies. Sure we had flu, colds, respitory issues, etc but nothing that required all of our attention, all of the time. I couldn't ever imagine having to deal with doctors and nurses constantly; nor could I imagine not being able to take away my kids' pain like "those parents" had to deal with. I really did wonder how parents of "sick" kids found the strength they needed to be there for their children. They were awe inspiring to me.
Now, let's get this straight. Kody is not "sick". His seizures are what they are and we deal with them. I had to learn immediately that my curiosities about those "other" parents were somewhat unwarranted. Because, when you have a child get a serious diagnosis, you deal with it. It isn't about you, or your feelings, or what you can or cannot do. You just do. That's it! Am I the strong one here? HECK NO! I still cry almost EVERY time I say the word "Epilepsy". The very thought of the acronym SUDEP sends an unimaginable wave of panic through me. Kody is the strong one. He lives his life. He doesn't have a "disability". To him, it's a situation that we deal with. He takes meds, he gets out of school to go to Denver, and he gets to eat at Famous Dave’s. He's aware that he cannot do the things the other kids do in the same way that they do them, but he CAN STILL do the things other kids do!
Am I scared? Yes. I am so unbelievably scared. I don't know how else to describe what I feel other than fear. It doesn't control me. It definitely doesn't control this situation. But this is my baby. Of course I'm scared. Tears stream as I tell you about my son and his life. They're there not only because of what we've gone through up to this point with Kody, but also because of those who have lost their battle. They're there because people don't understand that he's not ok because he "doesn't have real seizures". Kody has absence seizures and complex partial seizures. Note that they are both called SEIZURES. I don't think anyone has any idea the impact that the statement "Well, at least he doesn't have grand mal seizures" has on a 10-year-old boy who KNOWS that his seizures are just as serious, just as scary, and just as damaging as any other type of seizure. Please educate yourselves. I am raising three boys that can tell you all about the different types of seizures and appropriate responses if you see someone having a seizure. There is NO REASON the world can't know those things, too. The information is out there. The facts are out there.
So, there it is. The shortest version I could give you on my perspective. Thanks for taking a glimpse inside our world. Don't feel bad for Kody, or for any of us. Do right by him, and countless others, by getting involved, by educating yourself so that you can educate others, and by raising awareness. Knowledge is power.
Love,
H.
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