I’m not a writer but sometimes writing is the only cure for an aching soul. As Westley’s first appointment the morning of August 24th nears I see the worry in his eyes and feel the growing lump of emotions move their way through my body. Westley does not fully understand the havoc that Duchenne will reap upon his body over time but he does know and feel how stressful 4 days of constant tests and doctors have upon him physically and mentally. It will take him days to recover from these events. We have planned as many “fun” activities as possible and are blessed to be staying with 4 amazing “mothers” to ease our stress. Even still, to watch my baby well with tears at the mention of Cincinnati is heartbreaking. Westley loves an adventure but this is one he cannot seem to find joy in right now.
Most days I can ignore Duchenne altogether. Yes, ignore. It may seem weird but I see his physical limitations, medical equipment and wheelchair as our “normal” and then it’s time to deep dive into “how he is really doing”….Duchenne then becomes something you can’t ignore or brush from your mind. Its impending doom comes over you and lingers like a gray fog that’s weight takes over your every movement and thought. I manage stress with eating right, exercise (its free therapy) and just enjoying life but this one week a year even all those coping mechanisms combined seem to not be enough.
He already lost ambulation this year. Is this the year the Cardiac MRI shows he is declining? Is this the year he starts to loose lung function? How much time do I have with him… a year, 5, 10….the unknown is the most terrifying thing about Duchenne. Until the “all clear” verdict is revealed next week every step forward, every smile and laugh will be made knowing I have to hold strong for Westley and for Wyatt. They must not feel this burden because their little hearts are young and tender.
I live by this quote “We don’t know how strong we are until being strong is the only choice we have”. I thank God every day for making me such a strong person. He clearly had a plan for me. As always your prayers are appreciated and if you could throw a few more Westley’s way next week we would be grateful.