Will hasn’t had a follow up with the Leukodystrophy team since October, 2017. We were scheduled to see his team and also a new doctor from metabolic medicine on February 1st, but Will developed a fever and could not be seen at CHOP unless he was fever free for 24-hours.
We have had some test results since October, but none of them have been informative. We still do not have a genetic or other reason for why Will developed this neurological condition. We are scheduled to travel to CHOP the first week of April and will keep our fingers crossed (and our hands washed) that Will is healthy and prepared for travel. While I’m beginning to lose hope for a diagnosis, we are able to reframe and adapt to our life with this special boy by taking one week at a time.
Our community is generous and caring. Without prompting, we have had the most delicious mac n’ cheese, homemade baked beans, chili, guacamole, pot pies, lasagna, salads, brownies, and cakes dropped off over the past four months. We have had family and friends pick up or take kids when we need rides for them. Most importantly, we rely on family to take the older kids when we need time to be husband and wife. We are all stronger because of this unexpected journey, and it’s because we have all the right people who surround us with love and support.
A year ago Will, our newest member of the household was five months old. He was wide-eyed and curious, attempting to turn the pages of his board books. In the next three months, we noticed gradual changes in Will which later became obvious signs of a severe neurological problem.
Over the last eight months, we have turned every stone, looked for every known condition that might lead us to a cause for Will’s symptoms. Will has symptoms of Leukodystrophy, a general diagnosis for a disease process in the white matter of his brain. He has central hypotonia, dystonia, is globally delayed, unable to speak, and a quadriplegic.
This year our ‘together baby’ should be tearing the paper off of every present under the tree, a real terror! He would likely have stripped off the ornaments and lights while I was busy tending to the other children. I wanted that so very much; the craziness of a larger than life toddler. I know that we don’t always get what we ask for; things don’t always turn out as we had planned. As magical as Christmas can be, it can also be a painful reminder of the journey we had in mind. I came across an important reminder of how holidays or other times of the year can trigger feelings of anxiety and depression. Though my feelings are mostly grief and anxiety; I have to be honest with myself and others and acknowledge that these reactions are very real and important to process properly. Take a look at the blog post by Jacqueline Bogg or this piece by M. Lin. Remember to be present with the feelings you encounter along your journey; it’s important to work on all of the pieces of you, especially the not so pretty pieces.
Will’s gift to me is bigger than the sadness and fear I feel about his condition. Though I cry most days leading up to events like Christmas, I have to remember that he has shown me much more than sadness in the last eight months of his neurological mystery. The community who support our family by giving the gift of time, phone calls, messages, and food has lifted our family along this journey. Because of Will we have better seen the beauty of others. Our children have learned compassion, patience, and empathy because of Will. The work that I call my own is part of my ‘iWill’ story. The beauty I see as a result of Will’s gift to others is the ‘WeWill’ mantra I write about. Self-care is the personal work I do to stay strong for Will. My infrequent opportunities to exercise or get my nails done are ‘iWill’ moments. The words I write to help me process and accept this new normal are my ‘iWill’ moments as well. What are your ‘iWill’ moments like? Do you take a moment to think about how self-care fills your own cup?
How lucky are we to have the chance to see the world through Will’s eyes? What does he experience as a little boy with so much love and activity around him?