Back in September, Sophie suddenly and severely developed some neurological issues. They got so severe (at over 300 occurrences an hour) that our pediatrician sent us to the children’s hospital emergency room to rule out seizures. After several hours in the E.R. (Side note: Best E.R experience ever. Every single member of the staff was kind, patient, and sweet. The waiting rooms had toys and Disney Junior on tv, and there were tiny toilets in the bathrooms), we ruled out seizures but the doctors were pursuing some other leads, some of which were very scary and serious.
We were so grateful to leave that day having ruled out tumors, but we’d have to wait ages for a few more tests to come back. We had to put her on a very intense medication to control the involuntary movements and it was awful. She was exhausted and even when we decreased the dose, she really wasn’t herself for the next few months.
Then, like a Christmas miracle, a few days before Christmas, everything disappeared overnight. Gone. Completely.
And so it stayed for the next many months.
She was off her medication by January and back to herself shortly after. We thought maybe we were in the clear, but on Easter she caught a cold and on Mother’s Day, shortly after breakfast, everything was back.
And so it’s stayed for the next many months.
As we sat in the pediatric neurologist’s office again yesterday, he watched Sophie and played with her. He listened to me explain everything and asked me questions. But there came a point where the room grew silent, and he sat in his chair facing Sophie, just watching her, then staring at his shoes. Finally, after a big breath, he looked up at me and said “Mama, there’s nothing else to do. We can re-run every test, but even if something came up positive, there is nothing to be done. We can put her back on the medication, but I wouldn’t advise it, and I don’t think you want to do that to her either. You are doing what can be done. There is nothing more to do.”
My eyes met his and I knew he was right. We’ve seen many, many specialists over the last few months, and no one can sort out what’s going on. She tests negative for essentially everything, so these neurological issues are inexplicable and nearly every one of the issues of this type is incurable and untreatable anyway.
We left his office and the drive home was a difficult one for me. I sent a sort of numb text to Michael with the “there’s nothing more we can do” news and spent the next few minutes letting that really settle over me.
How can everything we’re doing still not be enough to make a difference? With autism, with these neurological issues, with the OCD and the feeding issues and the sleep disorders. Why must this tiny beautiful soul be stuck in such a difficult body?
The thousands of hours we’ve spent doing therapy and the thousands more we’ve spent doing our best to sort through difficult days and nights sometimes just feel like so, so, so much to handle.
There are times when the fact that we can’t go to the park, or pool, or a friend’s house, or to dinner, or shopping, or even to church in a typical way feels like so much to face, let alone anything big like a holiday celebration, or a family get-together, or a vacation. The daily struggle to eat, sleep, dress, and bathe Sophie is such a battle. The fact that I literally don’t know if I will ever sleep through the night again in my life sometimes feels heavy to bear.
And, on that drive home from the pediatric neurologist with Disney songs (but only the safe 3) on repeat in the backseat, it felt hard. I felt defeated and beaten, and like no matter how many hours of research I do, or dollars we spend, or therapy we diligently practice, or methods we try would make a difference. I’ve never expected to “cure” autism. My goal on this road is to help Sophie be as free and in control of her own body as she’s capable. I want to provide her with the opportunities she needs to live, learn, and love the way she can. To speak, to play, and move the best she can.
We climbed out of the car and I started making dinner while Sophie and Milo played in the living room. In the safety of the kitchen, I put my sweet potatoes into the oven, sat down on the kitchen floor, and just let all the sobs out that I didn’t realize I’d been holding in for so long. A mess of swollen eyes and blotchy skin, I was just starting to pull myself back together when Milo toddled into the kitchen. Confused (I think this is the first time he’s seen me cry since he was a newborn), he asked “Mama? What are you doing? What’s wrong?”
Lost for words, I responded simply, “my heart feels sad. I’m crying a little.”
Without a word, he climbed into my lap, wrapped his chubby arms around me and buried his head into my neck. He squeezed me tight and said, “Mama. I love you so, so, so much.”
Of course, this made me start crying all over again, but I squeezed him back and thanked him. He held on for a few more seconds, kissed me a few times to be sure I was all right and ran back to play, but it was just what I needed.
You know what? This? All of this? It’s a lot. It’s not the hardest lot in life (heaven knows there are SO many who have it so much harder and more difficult than I do), but it’s okay that it feels like a lot sometimes. It is for me.
As we have every step of the way, we will keep putting one foot in front of the other. What we have to give Sophie may not ever be enough to change things for her as much as we’d like to. But it’s enough. We’re doing small things with great love.
It’s all we have to give.
Which is so, so, so much.