one of a kind
I remember standing next to the hospital crib, helpless, holding my husband’s hand with tears streaming down my face as my daughter convulsed. 2 neurologists, 3 residents, and 3 nurses rushed around us, awaiting orders from the neurologist on what to do next.
I prayed over and over again “Lord, please protect her 4 week old brain, please help it to not be seizures”. 5 minutes passed. Lydia finally stopped convulsing. The neurologist looked at the screen, said something into her phone and then finally looked at us. “She’s not having seizures”. A flood of relief and confusion washed over me, and I looked down at my sweet, tiny daughter, now sound asleep. “We think she has a rare disorder called Hyperekplexia, a disorder where the startle (moro) response is exaggerated and causes her muscles to convulse, imitating a seizure.” I barely had time to process this information, as they started explaining some things and the attending physician had to ask the neurologist how to spell the disorder in order to write it on the white board in the room.
As a physical therapist, I knew most diagnoses, especially ones in the movement disorder category of diagnoses. And yet, I had never heard of this or anything related to it. The neurologist was very kind and straightforward and explained that she had only seen 1-2 cases of this disorder in her entire career and would have to do more research on this before she gave us more information. I felt numb as I nodded and weakly smiled and squeezed my husbands hand.
When she finally came back, my husband and I had one million questions. From our brief Google search, we found a few research articles but otherwise nothing. Like, nothing. Google has everything…we found nothing. No blog posts, no mommy question boards, no facebook groups, no “how I survived hyperekplexia” NOTHING. The research articles seemed so…insensitive. I love research and research articles and think they are highly valuable. But I needed a friend. Another mom to say “my kid had this and this is how you get through it”. So I asked the neurologist everything. We have a dog, can we keep her? Can we send her to daycare? Will she outgrow it? Will she always look like she’s having seizures? Does she need medication? Are there long term issues? And again, I got no answers. They were kind and tried to help us remain positive and reinforce that we should continue to live our lives. But otherwise, we were on our own.
Our third hospital stay, we had a different neurologist come see us. He sat down after we had asked him another round of 100 questions and looked me in the eyes and said, “this is a rare condition. No one will be able to answer these questions for you. YOU have to become the expert. YOU tell your doctors what Lydia is like and what she needs. Don’t assume that we have the answers or know more than you. I had to Google this diagnosis to refresh my memory before I walked in here, and every other physician will do the same.” I felt like he had just kicked me in the stomach. I needed to hear this, yet, I definitely didn’t want to. I didn’t WANT to be the expert. I barely knew my child, she was only 6 weeks old and we had been in the hospital 3 times. She had spent more time here than in her own home. How was I supposed to be the expert? I could barely keep her alive.
I just knew I would find someone, somewhere in the U.S. that could help us. I looked up the names of the physicians that wrote the research articles, and found they were in the UK and Sweden. I spent hours, months and am STILL continuing to do research, searching the corners of the internet for other moms, other articles, other answers. She has struggled with lots of things related to this diagnosis, and most days it just feels like we are simply surviving.
So, how did we cope?
I did exactly what the neurologist told me to do. I tried to become the expert. I learned about Lydia and tried to simply enjoy her and learn from her, respond to what she needed and support her growth. I am FAR from perfect in this and need constant reminders that my job is not to have all the answers.
The farther along I get in this journey the more I understand that even if I could find someone with this diagnosis or find another family that’s had a similar journey, it would not give me the answers that I desire. That’s because I’m not God. Imagine that! I can’t predict what will happen in my own life, much less what life will look like for my sweet little girl. Each day (some days are better than others) I practice gratitude. I list in my head or on paper all the things I can be thankful for, even if they are small. I am grateful we are healthy today, I am grateful for her smile, I am grateful for her laugh, I am grateful we have a roof over our heads. The list goes on. By the end of the list, I have a hard time feeling sorry for myself. Does this make the hard days any less hard? No. Does it make them more bearable? Yes. Not because things could be worse, even though I know they could be much worse, but because even with a rare diagnosis and unanswered questions, God is still providing for my family and I. It may not look how I want it to, or even meet one expectation I had for parenthood, but he is there and he has provided.