Our beautiful little mermaid isn’t doing well.
She’s not sick. But she’s struggling. Her energy is low. Her anxiety is high. Her body is tired.
We are scared.
Over the last four weeks she’s been dealing with ANS storms. (I wrote about them last summer when she was diagnosed with them.) This is not necessarily part of SMA, but a side effect, if you will, of the stress of the disease on her system — we think. Not much is known about ANS dysfunction, even less so in the SMA population. It seems to happen to people with spinal cord injury and ALS and other similar neurological diseases. It is relatively newly discussed in the SMA community — perhaps because children are starting to live longer.
What we do know for sure is it is extremely stressful on all of us. It is unpredictable. And we don’t know how to pull her out of it.
We thought she was fighting a cold four weeks ago, the same one Eleanora and I had. Now, in retrospect, we don’t think she actually got sick. She never had congestion or coughing or extra mucus the way Eleanora and I did. We don’t know if it was the fighting of the illness that triggered the storming or if she has been storming at a mild level for much longer. We don’t really know the cause and at the end of the day it doesn’t matter. The end result is we are dealing with a month of on and off:
high heart rate
She has days that are good. She seems brighter and more herself. And I can physically feel the stress roll down my shoulders and see a weight lifting from Bill.
But then she has days that are really bad. She suddenly goes white and clammy. Or red and splotchy. We have to give her oxygen. She can’t handle her breathing treatments. She needs extra rest. She is scared.
Bill and I have seen her in pain. We have seen her struggle. We have seen her near death. But we cannot handle seeing her afraid, panicked, looking to us to fix it. It kills us. And it makes us worry about the psychological trauma, not just the physical, of this disease. And that makes us question Gwendolyn’s future. When Gwendolyn was diagnosed with SMA we knew it would take her from us, but staring that in the face is terrifying. For all of us.
We nearly lost her to these storms once before. We didn’t know it at the time but after months of storming, her body just got too tired and she was hospitalized, eventually intubated because she just couldn’t handle it any longer, and we very nearly lost her. Razor edge.
This feels similar.
There is nothing doctors can do. Nothing. We can try this and that but it is all a bit of smoke and mirrors. And we are pretty sure over-treating her last time made things worse. We just have to hope she can ride this out and that nothing else comes into the picture to cause even more exhaustion.
We are tired. We are scared. But we are hopeful.
She has bounced out of these storms before. And so each day we start off with the assumption today will be a good day. Hope is the only thing we have to cling on to. You have to be optimistic when facing the unimaginable.
Grief has become so much part of our life that it has become a familiar acquaintance. Though not one we welcome with open arms; one we tolerate. And hope is it’s constant counterpart. There was a time when hope was a miracle, a wishing on a star for the impossible. But I let that go a long time ago. Now hope is more basic. A wish for peacefulness, for comfort — for all of us.
We’ve learned to focus on the glimmers of our girl’s spirit. To resume a sense of normalcy when we see it and allow our bodies to decompress and our wounds to begin to scab over.
We’ve learned to shut down and laser focus when those glimmers disappear. To be fully present in that moment knowing it could be our last together.
We are truly taking things day by day, sometimes hour by hour. Trying not to get too ahead of ourselves with the what ifs. Trying not to be too cavalier that all will be fine.
And at the end of each day we look up and simply hope tomorrow is better.