3/13/19 A rough morning for seizures and breathing

It’s been a minute since I’ve provided a proper Adelaide update and its mostly because I just have no idea what to say. Adelaide has been in flux with no two weeks looking the same for quite some time. She hasn’t required additional oxygen support during the day in over a month which is amazing considering that in January I was fairly certain she was dying and wouldn’t see February. Unfortunately, it turns out that the med we pulled, the one that was causing the respiratory duress, was helping control her seizures. Taking her off it undoubtedly saved her life, but in February we found ourselves back in the hospital after her seizures returned with a vengeance. After the first night Miss A was connected to EEG monitoring we learned that in addition to the increased seizures we could see, Adelaide was also having sub-clinical seizures (ones we cannot see) in her sleep. What the actual F***! Excuse my asterisk filled French, but seriously?!?! I’ve written about being cautiously pessimistic, and I had been, but news of a new seizure type completely blindsided me. After three days of med adjustments and frequent blood tests, we left that hospital stay with very little improvement in her seizures. Additionally, the extreme lethargy we had rallied against just weeks before was back. Today we have a difficult time telling if Miss A is awake or asleep and within the last few days her breathing has not been as strong. Is this due to the increased seizure activity? The amount of high dose drugs she’s on? Seasonal allergies? A cold? All of the above? We just don’t know. Add it to the list of Adelaide’s unsolved mysteries.

Photo Credit: Lori Sapio Photography 2/21/19

As we talked with her medical team about our next new plan, again, and what to watch out for, again, and how long it would take to hopefully see any results, again, and everyone taking their best guesses as to why the last plan didn’t work, again - I grew very, very tired. As I type today, there is no light at the end of the tunnel, this is our life and Adelaide’s reality, for the foreseeable future. This is what incurable chronic illness looks like for so many, I know we are not unique yet there is little comfort in being one of many. Every week we speak to her epileptologist discussing drug levels, adjustments to the plan and seizure control vs. quality of life. There is no right answer. But we have to keep pushing forward, we have to keep trying because I can’t exactly tell Adelaide that I’m tired of fighting when she is literally just surviving. It is these feelings of desperation and exhaustion that have been consuming my mind for the last month or so and I’ve had a very hard time articulating them to those asking about Adelaide and our family. Only in writing this blog did I realize why. Culturally, we have a way of minimizing the stress we are under or the hardships we are experiencing. As if we are not allowed to admit that life is hard because someone else might be experiencing worse or because we don’t want to depress others. Even with this blog or my social media posts I am cautious of not sharing too much of the negative stuff for fear of turning people away. But you know what? Life is hard! I can’t remember a day when I didn’t just sigh and acknowledge that I was sad and that caring for Adelaide is ludicrously stressful. Now, this does not mean that I am wallowing in depression. It just means that for a few moments I allow myself to be sad. I acknowledge how hard this all is and then I move on… or I take nap. Sometimes, I just really need to take a nap, and I’ve decided thats ok too.

Clearly, I am never going to stop caring for and fighting for Adelaide but we all need a little hope in our lives. So where do you find hope after three years of failed treatments? For me, the answer is in new research. I know the answers for Adelaide are out there just waiting to be uncovered by some diligent researcher. Maybe the next discovery or the next new treatment will be the one. This is why epilepsy research has been such a central focus of my fundraising efforts. Through CURE I receive daily and monthly recaps of all the epilepsy research being done in the world. I scour it looking for anything that I might be able to forward on to her doctor because it gives me hope. Get ready to feel inadequate: I’ve actually spoken with a couple parents of kiddos with epilepsy who went back to school to become scientists, or changed their scientific focus, so that they could personally conduct the research studies needed to discover more about their child’s specific condition. Yeah, and you were proud of yourself for making sure your kid had on clean underwear and didn’t smell when you dropped them off at school as the bell was ringing…slacker.

Because we can’t all don white lab coats I urge everyone in our shoes to hunt down your own source of hope. Maybe its in your friends, family or religion. Maybe its in knowing how you or your child have positively inspired others. Maybe it’s through kicking your diseases ass one day at a time and not letting it win. Or maybe you’re having a hard time finding hope and just need a nap (and maybe some therapy, gosh it feels good to vent without a filter to a relative stranger). Whatever it is, find your hope and hold on to it because screw the light at the end of the tunnel, I’m not patient enough to wait for that. I will make my own light, thank you very much.

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