"Be kind to me Lord, for my boat is so small and the sea is so wide." - Irish prayer
This simple little prayer is something that can resonate with all of us. It calls to mind the feeling of despair and loneliness that washes over us when we are facing something that is just so much bigger than we are, that feels like it's so much more than we can handle. Our little boats could be so easily swallowed by the awesome power of our personal stormy sea: by Cancer, by ALD, by responsibilities that come with work or family or bills that pile up. But, it also calls to mind the feeling of awe that overcomes us when we are faced with our own minuteness, with the vastness of the universe, the enormity of life, the power of love and kindness, and the boundlessness of God. At once, it makes us think of despair and fear, of prayer and hope, but also of wonder and trust. I find this prayer running through my mind lately and it seems to be quite appropriate.
It's the middle of November and any of you who frequent Facebook are probably well aware of the "Month of Thankfulness" posts that people are posting every day. This is a little hard for me - not because I'm struggling to find things to say that I'm thankful for, but because there's just so much that I'm thankful for that it's hard to decide what to say that doesn't make me look vain. I'd look like a boob if everyday I posted about how glorious I think my life is. Smug is not a pretty color on anyone. I'm not smug, though, I'm just awestruck. My boat is so small and the sea is so wide - and stormy, and the waves are high and fast - but the Lord has been so kind to us and the stormy sea is so beautiful.
Cutler's cancer appears to be gone. Yes, I wrote that right. In all the striving to be hopeful and have faith, to just Keep Going, I barely noticed the sense of fear and expectation of the worst that I had been wearing around my shoulders like a heavy, smelly old shawl. It wasn't until it had been lifted away by the doctor's stunning news that I realized I had been carrying it around most of the time. We knew that his chemo appeared to be working because they began to be able to see brain features through the tumor tissue on MRIs. However, his seizures were still happening frequently and there have been some communication issues with his team that made things happen like him missing chemo doses every month. We didn't feel like we really knew what was going on with his tumor and his treatment plan, which is a terrible feeling. Knowledge really is power - it grants a feeling of stability, expectations, and tracked goals. A lack of understanding creates a feeling of powerlessness and raises fear.
So, because we didn't really know what was going on with him to begin with, and because this not-knowing created a glaze of bleakness, the announcement that his latest MRI is clear came as a total surprise. I cried, of course. Cutler told the children each separately as they came home from school. Cai screamed with glee and hugged him. Gabe, like me, cried and clung to him. Cutler's doctor (a wonderful, kind woman who we trust very much) plans to keep him on chemo for a while to mop up any cancer cells that may be remaining and are invisible to the MRI. She has a plan to get his seizures under control and will be adding some medications to help with memory and joint pain. To Cutler this meant that, seizures be damned, he was going to do everything in his power to get back to work.
Unable to drive and having multiple seizures a day, tired and sick from chemo, Cutler hasn't been able to
go to work. It's been driving him crazy being stuck at home. He loves his job and he loves interacting with people, so as soon as he heard that the tumor was gone and the doctor thinks they can get the seizures managed (though he'll always be a seizure risk), he started keeping a seizure diary for his neuro-oncologist and called his old boss. He was thrilled when they said that they would welcome him back. Now he's in the process of returning to work and eliminating the seizures as much as possible.
Gabe got some personal good news of his own this month: Make A Wish will be granting him one wish! Several of our friends and family members have expressed concern with this announcement that it might mean that Gabe has taken a turn for the worse. I assure you, this isn't the case. Gabe is still doing well. Make A Wish is a wonderful organization that grants wishes to children with life threatening illnesses and they spoke with his doctors and determined that he qualifies for a wish. Gabriel has been complaining of back and leg pain for a few months, and we have a neurology appointment in January to talk about nerves and spinal cord again, but his MRIs have remained blessedly clear. His school has been very helpful with maintaining his medication dosages during school hours and increasing them when he gets sick or injured on the playground.
Cutler and I discussed whether or not we should talk to Make a Wish about Gabe because he IS doing quite well compared to many boys who have ALD. But, the truth is that we have no way of knowing how long he will continue on this path of wellness: it could be forever or it could be months. Because there is no standard of pathology and no way of predicting his phenotype, we decided that the best thing to do is to let Gabe experience as much of life as he can while he's healthy and able to fully enjoy everything. Now is the time to live your dreams - not tomorrow, not when things get dire. Now. All we have is the present moment; don't put off living until later. You know, this really isn't a bad way to approach life in general for all of us, not just a good way to approach it for people who have life threatening condition. Life itself is a life-threatening condition.
Gabe received his wishing package in the mail and has been busy thinking up wishes in the categories that they gave (if I could do anything, be anything, go anywhere...). Gabe's ultimate wish is to travel the world and see other places and cultures. He wants to be a pilot so that he can fly himself around the globe. He would like to go to Venice, Rome, on Safari in Africa, meet and be blessed by Pope Francis... When we walked into his room to get some ideas of who Gabe is and what he likes to tell our Make a Wish contact during our phone interview, we saw three National Geographic magazines open on his dresser. Unfortunately, Make A Wish is a program with the limitations of most non-profits today. It's not realistic for them to send him on a world tour and the waiting list for wishes outside of the continental US is a minimum of three years. The wait time for wishes inside the continental US is 6 to 18 months. We don't know if we have three years. So, Gabe has an idea: maybe he can take a pretend world tour. Disney has the Animal Kingdom Lodge that can make him feel like he's on a safari (complete with zebras and giraffes outside your window), they have snorkeling in the Typhoon Lagoon.... If we can't bring him out to the world, maybe we can bring the world to him here in America.
Soon, we'll hear from a team of volunteers who will talk to Gabe about his biggest wishes and work with creative license to make one of them come true. Until then, we have some documents to gather and Gabe gets to have fun coming up with wishes and thinking about what he wants most in the world.
We're still taking it one day at a time and finding happiness together in the little things. I love my job with EMS and I love coming home to my family at the end of the day. Every day is better than the last. Our little boat gets tossed on the waves sometimes, but it sure is an amazing ride. And it sure is an adventure. And the Lord sure is kind.
