“Life is a balance of holding on and letting go” – Rumi
This week my heart is simultaneously full with love and heavy with sadness. It is a strange sensation to be filled with such intense happiness as well as despair. But this is the walk that we do. The balance of holding on and letting go is so bittersweet.
We are celebrating the culmination of several months of play practice with a role in a school play. The performances begin tomorrow. We celebrate full inclusion in that performance, independence in diabetes care, and support only where she needs assistance. We share her joy, exhaustion and sheer delight about this milestone.
We celebrate a two and a half year hiatus since the last spinal surgery (it’s a rarity for people with CLOVES Syndrome to go this long between major surgeries). We are celebrating almost two years of stability (read no significant changes via MRI & no progression of disease) thanks to an experimental medication. We celebrate finding a new resource for people who are living with upper limb differences. Plus their winter gathering is in two weeks, at a driveable location, in an affordable hotel. As an over-researcher/over-googler, I get so giddy when I find a new resource that fits our needs and is inclusive to kids with paralysis and not just kids with limb-loss/congential limb differences. We celebrate normal tween milestones like moodiness, new friends in sixth grade, questionable decisions, love of texting and honor roll.
We choose to celebrate all of this, because we can, and so we do.
We grieve about a life interrupted. We grieve about uncertainty. We grieve about the worry that is with us constantly; every hour of every day. We grieve about the impact of all of this on our family. We grieve for other families and kids who are also struggling. We grieve that there are limited treatment options. We grieve the fact that we must discontinue a medication that has been helpful with stability, because the down the road side effects “may” be worse than the disease progression. We grieve the fact that this choice to stop the medication was suggested strongly by a medical team that is collaborative, respectful and family-centered (and whose opinion we value greatly, because they value ours). We pushed back and so did they. Oftentimes this grief is fuel for moving forward.
We are hopeful.
We are hopeful as we advocate with passion and persistence for people with rare diseases. We are hopeful as we blaze a path for people who do not fit neatly into medical systems & treatment plans. We are hopeful as we reflect and see how far we’ve come, and how things are better than they were in the past. We are hopeful because without hope, how would it be possible to get up every day and fight the good fight? We are hopeful as we charge forward into un-chartered waters knowing that it is our job to do so. We are hopeful because we know that so many others also feel the same way and that there is strength in our numbers.
Love for our children guides us and the hope for a better life shows us how to do so. It is messy, complex & exhausting. But no one else will do this for us. It is our job.
This life we live is so very bittersweet.
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