I haven't written a post in a very. long. time. I write now because after a very heartbreaking 3+ months in the land of SMA, I have hope. Actually, it's the most hope I've ever felt.
I have more recently considered myself sort of a 'spiritual realist' meaning I look to the universe for signs and answers, and I find so much meaning in moments and nature. Since Charlie's diagnosis everything means something to me. When an owl visited us last year I became obsessed with googling them and what they symbolized... I took that information and gently filed it away with everything else my little professor has taught me. Ladybugs, dragonflies, hummingbirds...they have all taken my breath away and made an impression on me these past 5 and a half years...that's the spiritual part. The realist part means I am well aware of what's really going on here...the answer to this equation is the sum of ALL parts...I force myself to look the ugly straight in the eye and I very willingly immerse myself in the beauty of everything Charlie, fragility and all, to come to what I have thought, are well rounded conclusions about this life of ours.
When it comes to SMA this philosophy has taken very good care of me. I know my daughter is very sick, I am very aware of how this story usually ends so I inhale her, learn from her, see the world differently because of her, all while reminding myself it probably won't last forever. I have never really strayed from the 'reality' of this situation, I have never really dared to DREAM of what could be...I have never given myself permission to, I was afraid to, I still am sometimes. I have been afraid to get so caught up in hope that if anything other than my fluffy happy ending occurred, I would have been unprotected and devastated beyond belief, much worse than if I just faced the cold hard facts all long. I thought It best to prepare for the worst. I thought that if I kept reminding myself her time here was short and stayed far away from denial, i'd be safer in "the end".
After a heavy few months a couple of things have tweaked the way I have been accustomed to thinking.
In May I broke my ankle. Man did it affect my mental health...I was so used to running and keeping busy for FIVE YEARS that I wasn't actually really dealing with a lot of things I should have been dealing with...now that I couldn't, very literally, run from my life I really had to face it. I didn't know what to do with it though, I still don't. How do you process real impending doom? How do you sort through it and make it ok with yourself? I had a lot of time to think about it though. I was crying a lot and just generally depressed that I couldn't even take care of Charlie properly...we are always focusing on Charlie not getting sick and forget to realize we need to be in tip top shape to take care of her...I guess that's any parents worry, but I ended up feeling ultra alone, with too many overwhelming responsibilities. I became riddled with anxiety...my eye was permanently twitching, I developed psoriasis, I had scary dizzy spells and was on a first name basis with my doctor. I took Charlie to Canuck Place for a few days right after my accident because I couldn't really lift her (although I still would...I didn't know how to relax) and they were kind enough to help me take care of her.
While we were at Canuck Place Charlie's buddy Florence who also had SMA came in with her family for end of life care. I was texting with Michaela, Florence's mom, and asked if I could see Florence. Shortly before she passed away Michaela invited me to come into her room to see her. I stroked her beautiful angelic blonde curls and sobbed with the family...this disease is so heartbreaking. A couple of hours later I was in the TV room at Canuck Place with Charlie when a light went on over the bedroom door that Florence and her family were in. One of the nurses informed me that when that happens it means the child has passed away. I had Charlie on my lap when I saw the light. Instant tears. I promptly picked Charlie up, placed her in her wheelchair, apologized for myself, and quickly limped to our room. When I got there I scooped Charlie out of her chair, hopped her to the bed, laid her down, jumped in, spooned her tight and sobbed and sobbed. She asked, "what's wrong mom, are you sad?" I said "yes, mom's sad Char." and it's like she knew this was a time to just let mom hug her for way too long. And she did. She cooed and smiled and just let me weep and hold her close. A week later I went to Florence's celebration of life and spoke about SMA at it. It would be my first time as an adult at a child's service and I was very emotional and nervous leading up to it but it wasn't about me and it was so, so beautiful and powerful. They played Katy Perry's "Roar" during a video celebrating Florence and I weep and think of Florence every time I hear that song now.
I met Michaela about two years ago via email. I can't really remember but I think it was one of our girls therapists that encouraged it and introduced us. We planned a playdate for our girls. I showed up with Charlie and stayed much longer than I expected to. We shared our diagnosis stories and many tears. Our girls gently grasped tiny animal figurines on the couch and smiled and talked to each other in their own secret language. It was heartwarming. They were instant friends and they were like each other. Charlie was 3 and I had never seen that before. And it was this day that the beginnings of the first instigator of my new found 'hope' was born...I held Florence at one point. I remember really noticing a substantial difference in her strength and muscle tone from Charlie's. It was clear to me that she was much weaker then my girl. My heart sank. I later told Matt that I wasn't sure if I could do it again. I was scared to get close to Florence because I didn't think I could handle it if something happened to her too. I wanted to 'protect' myself from the hurt of losing her too. I thought about how many people might be afraid of my family, busy 'protecting' themselves, and it hurt, we needed them. I saw Florence a few more times at her home, at Canuck Place events, and at the hospital. And something happened when she passed away, and when I recently went out for dinner with Michaela I told her this...in the end, I only wished I had gotten to know Florence better. Not for one second did I regret meeting her, I only wished for more of her. Florence was another little professor that taught me a HUGE life lesson...while I've been busy 'protecting' myself, I've been missing out on what really matters and what will truly fill my heart. We can't really plan a lot for the unknown, we don't know how we will cope or react until we are there, so try to enjoy the journey as much as possible along the way. Thank you for this lesson sweet Florence.
Another instigator of this new hope that I carry is that right around that time I had begun to plan a run to fundraise for SMA. I asked Michaela if it would be alright to honour Florence and call the run 'Florence and Charlie's 10k to End SMA' and she was happy to be a part of it even when she was/is dealing with so, so, much. Planning the run was super stressful but fun and a good place to put my energy. It was successful and we raised $25,000. Currently there is so much happening in the world of treatment and the cure for SMA that it has made me think, maybe it's possible? Maybe we can work hard and fund the cure? Why CAN'T I have real hope? What if instead of planning on being devastated that something happened to my daughter while I was too busy hoping, I instead had fewer regrets BECAUSE I never gave up and always carried hope for her and all of the other families affected by SMA? There will be many close calls and seemingly hopeless days to fall back on like a bad habit, but I have decided to try my best to put out into the universe what I want back from it. I will now consider myself more of a spiritual optimist (who relapses as a spiritual realist from time to time). :)