I don’t share a lot about Ema’s health issues anymore. I prefer everyone sees Ema for who she is… a beautiful, funny 13 year old young lady.
Ema also prefers I don’t speak about her Rett journey to others. It is a fine line of raising awareness and not making Ema feel uncomfortable. I never want Ema to feel that “Rett syndrome” is who she is.
Lately though I have had more and more people asking me why I am so tired or are not understanding why I can’t help them with their projects. I don’t think people understanding the journey of living with a child with complex health issues so today I want to share a tiny snippet of one of the many many many things we go through behind the scenes.
Today consisted of many phone calls for Ema, one which was to get Ema’s EEG results.
The results of her EEG done two weeks ago is a bit better than the previous one. It was better but still showed seizure activity. With today’s call, neither her neurologist nor I are doing black flips but we do remain hopeful.
Ema seizures started around the age of 3 ½ (She is 13 ½ now). Many who have Rett syndrome also have seizures; It is pretty common. Our journey with seizures has been a very long one. Some years we couldn’t make it 4 weeks without a whole cluster of them happening. Her seizures are different kinds so you never know what to expect.
I honestly hate even mentioning that she has been seizure free for the last little bit because I am worried about jinxing it. I started having seizures when I was 19 so I know how they feel; It is one of the top health issues I wish Ema didn’t have to go through.
Along with Ema’s neurologist, we have agreed to slowly start decreasing one medication and increasing another over the next many many months. Our goal is to get her off one of the two meds. Even though it is a good thing to start reducing medication, the worry now increases to seizures starting again with the medication decrease.
I can remember the results from Ema’s first EEG like it was yesterday. It was Ema’s then pediatrician who read us the results. We sat in his tiny office with Ema as he looked over the results. As he read, he would say things out loud like “OH that isn’t good” and “OH!! OH!!” over and over again. I finally asked and he said “These are not like a normal EEG, these are really really bad!”. Looking back, I think this doctor is what I needed to light a fire under me but it still was really devastating at the time. He continued to say horrible things over the next few appointments making it impossible for me not to request a transfer to another doctor. (The new doctor we got, we still have to this day!)
So when I can’t help, it isn’t because I don’t want to, it is really because I am truly tired. It doesn’t matter if it is the results from her first EEG or today’s results, life is never quiet or calm or worry free when you have a child with a special need.
EYES on EMA 