Scans and seizures

 

There’s something that happens to you once your child has been given a terminal diagnosis. A switch flips in your head and suddenly everything is knocked upside down. I am constantly trying to predict the falls that Bridget will take, the stares that she will receive, and the illnesses that she may contract. I’m in a vicious cycle of worry and stress. Michael handles this way better than I do. He can typically turn off his worries and focus on the day at hand with a positive outlook, whereas I live in this bubble of “when” and “what if”. I’m jealous that he is able to do that.

I’m currently on maternity leave with our youngest daughter, Greta. Let me tell you, 3 has been a game changer. Never did I think we would be adding a 3rd, especially given our situation...but I’m so glad we did (eventually I will look like a relatively put together adult again right?!). While I should be soaking in every sleepy, cuddly moment (in between the crying sessions of course)...I find myself envisioning the future. Will Greta get to know her big sister? Will she get to appreciate her for who she is like Luke has grown to do? 

I think a lot of this stress and questioning is derived from the brain MRI we finally got to do this last week. Our check in time was 5:30 am and we drove the familiar route down to Methodist hospital...I cannot even recall how many times we’ve made this trip. The staff and nurses were wonderful as usual. I always pump myself up saying that I won’t cry, but every time her super human strength comes out when attempting to put her under, and watching grown adults throw their bodies on top of her to assist in the process, I lose it. The terrified look in her eyes is burned into me. I wish there was a way to communicate to her what we were doing and that this would help her. 

My stress level heightens when everything is over and she wakes up in recovery. Do I want to see the updated scan, absolutely. However, I’m also terrified to see that image. You see...we had been noticing some new behavior with Bridget recently. With school starting up after she hadn’t been there for months, I asked her sped. teacher to inform me of anything new they observed.  The team working with her is phenomenal, so I knew they would recognize if something seemed off. Naturally they reached out to identify differences in her walking, endurance, and fine motor skills (all of which we had observed as well), including the other big one: evidence of seizures.

When I began researching Sanfilippo, I caught on rather quickly what would happen throughout Bridget’s battle with the syndrome. I knew that mobility, speech, and eating/drinking on her own would slowly become nonexistent. Other signs and symptoms I have been on the lookout for too...but one of the signs (seizures) I always noted as happening further into the syndrome...like one of the final issues to occur. To me this is a completely sickening thing to think about. Are we already there? Is this actually what is going on? We have seen her have what we assume are drop seizures (and other Sanfilippo moms agreed after seeing videos of them), and now absence seizures?!? I mean...how much does this little girl need to go through. It’s not fair. I’m watching her while I type this, with tears in my eyes, wishing that I could just pray it all away. Why Bridget? What is the point? What is the lesson we are all supposed to be learning from this?

I always knew I wanted to be a mom. I knew I would worry, plan, and fret over the future...but I never anticipated this. I could have never dreamed of this life we are living. It’s a strange feeling to have a brand new little life join your family with the whole world ahead of her, and also to have another child with time running out. I’m not sure anyone knows how to cope with that. Maybe there isn’t even a correct way to handle it.

If you are able, please say some prayers for Miss Bridget as I head to the doctor on Tuesday to examine her new brain MRI and compare it to last years...as well as discuss with the doctor the next plan of attack regarding the seizure evidence we have been collecting. ❤️