Life as of late has been hitting hard. During the last week of August I told my neighbors that if I could make it to September 19, I would be having a party that weekend to celebrate. Well, September 19 came, and instead of going home and being able to relax and let go of an intense few weeks, life stepped up further. I look back and laugh. On September 19, after my son Trey’s monthly general anesthetic and lumbar puncture as part of an intrathecal (IT) clinical trial that puts the enzyme he is missing into his central nervous system, Trey lost the ability to walk (it was unrelated to the procedure and he did get back to walking with a limp after about four days). September 20 we spent in Emergency at BC Children’s Hospital, which led to a number of last minute and emergent appointments at BC Children’s Hospital over the next weeks, in addition to the regular checkups at Children’s and another trip to ENT after Trey shoved Playdoh in his ear.
A few weeks later, one of my nightmare’s finally came true when Trey came down with the flu less than 12 hours before his October life-saving IT dose which resulted in the cancellation of the procedure. Fortunately (this was the first time this has happened), they were able to reschedule the dose for the following week, which was last Thursday, October 24. A week ago we also got a call that Trey’s knee surgery (the cause for his sudden inability to walk), was scheduled for this past Monday, October 28.
This doesn’t acknowledge Trey’s meltdowns in the middle of the OR refusing to go under general, or what it’s like to sit in the waiting room imagining what the surgeon is doing to your sleeping child, the last minute need to find sitters and drivers for my other children Avery and Sadie, me wondering how and why in the world I ever thought I could teach yoga when I am mother to a child with a progressive disease, and the feelings of unfairness, fear and overwhelming emotion of it all. How do I mother two children who are dedicated to and passionate about their activities, when I have another child with dire medical needs and whose medical needs trump the other kids’ activities every time? How do I look after myself and my well-being amidst all of this? And what the heck about my partner Ryan?
Trey’s knee surgery was Monday. Surprisingly, he went to sleep well, which was a relief. My good friend Melissa called moments after Trey went back to see how surgery was going, so I went into the lobby to speak with her. While I was speaking to her, I saw a friend. It was strange because he had no reason to be at Children’s, so once I got off the phone, I walked over to see him.
It is almost indescribable what he looked like. He looked like a zombie: inhuman, pale, almost not in existence. Looking back, I wonder if that’s what I looked like after Trey was diagnosed. Without sharing too much of his story, his son had a sudden and unexpected medical emergency that landed him in the hospital Saturday night. When we saw him Monday, his son had no brain activity. Tuesday night, they said goodbye to him.
For the first time, I saw the other side. I saw me in someone else. I saw such devastation that there is nothing to say. I saw the lack of eye contact that Ryan and I had right before Trey was diagnosed because eye contact would acknowledge the fear and hell and end of the world that was in front of us. I saw the sobbing from such extreme sadness that the entire body was ravaged. I saw the helplessness of the grandparents. There was nothing left. I’ve been there. No pride, no dignity, no ego, nothing but existence.
After Trey was diagnosed, it didn’t register in my mind that I was still alive. I didn’t feel alive. But here I am today. Then I think about this family. Right now, all they are doing is existing. The rest of the world is holding them up. The earth, their family, their friends. I think about them and I feel such deep sadness. There is no out. There is no end to the hell. There is no hope. This is it.
In most parts of life, we can find a ray of hope: a better day tomorrow, a better job next time, a worse situation than your own. But in those moments when there isn’t anything better, not even the potential for better, all you can do is be. In my past couple of months of overwhelmingness, I have thought a lot about just being. I have thought a lot about my tendency to resist feeling overwhelmed, to resist extreme sadness, to resist fear. I want it to end. I push it away so I don’t have to feel it.
One of the reasons I practice yoga is because it works on ‘being.’ It works on being here now, following and focusing on the breath. I can sit in chair pose and watch my thoughts as I sit in the posture longer and the sensations get increasingly intense. What does my mind do when I think my body can’t stay there any longer? What happens when I’m holding dancer’s pose and it’s getting tough and instead of waiting for the teacher to say ‘release’, what happens if instead I breathe into the intensity, I breathe into what I feel (in life I noticed that as soon as I gave up my end dates, such as September 19, and let go of my history of challenges and treated each moment as new, life got easier)? I like yoga because it gives me a way to focus on my breath and an opportunity get to know my mind, when it’s not a matter of life and death. When it doesn’t really matter.
What I have learned through my life and yoga is that sometimes, when life is too much, all you can do is be.
I have spent a lot of time recently sitting with emotions that are not happy or positive, and I get the impression that it makes some people uncomfortable. It seems like human nature to want to make things ‘okay’ or to look for the positive in any situation. Sure, you could say I’m fortunate that Trey’s alive even if he has MPS or that my friend’s child would not have been able to lead a full life even if he had gained some brain function back, so it’s better that he passed… but does that help in times of grief and utter devastation? No.
As hard as it’s been to let go and just sit with really deep and intense emotions, I am enjoying getting to know myself. It’s interesting watching my mind when it says ‘I deserve’ to watch TV or pick up some chocolate, or ‘I need’ a glass of wine or ‘I can’t take anymore,’ and instead, just sit with whatever comes up.
Instead of pushing feelings away, I’m allowing them, which is beginning to feel cathartic (at first it was terrifying). As a parent to a child with a progressive disease, my friends or I, at any given time, receive a lot of scary news and are faced with tough decisions about the lives of our children. Children in our MPS community pass away regularly. It is not a road for the faint of heart. My life is raw. There is often anger, bitterness, helplessness, and sadness. More than all of that though, is love. There is so much love.
What I am learning is that instead of fighting my emotions and bottling them up, which is exhausting, and they always come up eventually anyways, is to allow my feelings to exist. I am learning to give them the space that they need, and then when I am ready, I breathe into them and let them go. I’m learning that sometimes all we can do is breathe and let go. Breathe and let go. Breathe and let go.