**You didn't find the difference that makes all the difference. **
You see that little 7yr old was going off to second grade recently diagnosed with Absence Seizures and on medicine that wasn’t fully controlling her seizures and had many side effects, the biggest one being that she was exhausted all the time.
That 11yr old went off to middle school with NO SEIZURES and OFF ALL MEDS.
The journey wasn’t easy. When I stopped to count up the years since she was diagnosed I counted multiple times because surely we dealt with this for longer than 4 years. In those 4 years she was on 4 different medications, including the 9 horrific months she was on medication #3. The 9 months where I cried more days than not. Where we felt like we were losing our sweet girl a little more each day.
Our journey has been hard. We have encountered people that were hard. But we also found some of our dearest and truest friends. The ones who shared in our pain, who listened, who looked out for Emmie, who looked beyond the medication side effects and all the seizures and loved her, and us, beautifully. I will forever hold dear to my heart Emmie’s friends who stuck with her through the hard and the dance friends who would quietly move her to where she needed to be and the friends who would help her refocus after a seizure without ever losing patience. And I don’t say much about her siblings when I talk about Emmie’s seizures but they have been champions through these years. I know it has often been hard and even confusing and scary for them but they have handled it all so well. They have been her constants in a world that was so often topsey turvey.
Our journey has been difficult and I wouldn’t wish it on anyone. No one should have to watch their child seize over and over and over. No one should have to see their child’s personality change overnight. No one should have to see their child unable to function every single afternoon because they are so exhausted. No one should have to walk behind their child when they get ready in the morning and remind them, after each seizure, what they were in the middle of doing when the seizure started. No one should have to be told that their child might have intractable (untreatable) seizure. No one should have to choose to keep their child on a medicine that causes major personality shifts but it’s the first medicine that has ever controlled their seizures.
But we did these things. And we survived. And we not only survived we grew. And from the brokenness of 2 years ago (when we switched to medication #4) we have pieced together something that is absolutely lovely. We have healed. We’re not the same as before and sometimes you can see the cracks but I think those cracks make us stronger and kinder and better. They have changed our perspective on so many things. They remind us, as I often told Emmie, that everyone has struggles and many of those struggles we can’t see.
The most freeing thing that I got out of this journey was acceptance. For years I prayed for the seizures to end. I imagined what the day would look like and the way I would feel when she was declared seizure free. But here’s the funny thing, we went for her final EEG and I was calm. Like so calm I fell asleep during the EEG (they have a part during the EEG where they want the patient to sleep so they dim the lights and it’s quiet). If you know me you know I am pretty high anxiety especially when waiting for something (like finding out if my child is seizure free!). But I slept. I had peace. Somewhere in the healing I had seen a glimpse of the beauty God was creating from the brokenness. I had seen that His plan was so much better than mine. Of course I hoped her seizures were gone but after so many medication failures I wasn’t counting on it. But I was ok with that. We had found a medicine that controlled her seizures and had very minimal side effects. It was ok if she still had seizures. It would just be part of the story of Emerson. I think even when the EEG came back clear I still didn’t really believe that we were done. Hence why she has been off her medications for 5 months and I am just writing this post!
For those that know her story well you know she was pretty been beaten down emotionally when she was on med #3 but she had some pretty amazing adults (and kids!) in her life who helped rebuild her confidence and self esteem.
So did you see the other difference between those pictures? That kiddo going off to middle school is a fighter. She is strong.
