“the first thing i want you to know is, he’s going to be ok.”
there’s a lot about november 30th that’s a blur for me. i remember in bits and pieces. but the dr., sitting across the room from me, an earnest, gentle smile on her face, her eyes trained on mine, and the confidence and kindness with which she delivered the diagnosis, is something i won’t likely forget.
juvenile localized scleroderma. rheumatic autoimmune disease. connective tissue. no cure.
i sat, observing. doctors turned him this way and that. spoke over him about this part and that part. my beautiful boy was much as he always is—nonchalant, easy breezy.
my heart squeezed and twisted and folded in on itself in my chest.
there have been more appointments since that early morning. more examinations. more recommended courses of action to maybe | perhaps | hopefully slow or even stop the progression of this disease. this disease that is potentially disfiguring. this disease that is potentially disabling. this disease that is rare and not fully understood as to present in a myriad of different ways so that there is no one treatment and no one outcome and no one person who can tell me anything other than what we can try. because this disease is a lot of maybe | sometimes | potentially we just don’t know for sure.
i have felt broken, before. i have felt helpless and hopeless and lost. in the past, i have despaired. but there is nothing that will ever compare to the feelings of abject inadequacy and uncertainty i struggle beneath and continue to wrestle against since nov. 30th.
but. my boy is beautiful. and although i obviously think he’s quite gorgeous, i’m talking about his heart, his spirit. who he is, and who he will be regardless of this disease. without having any idea that he does it, he buoys me. with his acceptance. with his hope. with the way he embraces small moments and silliness and counts it all joy rather intuitively.
and my heart beats like normal.
my faith has been going through a reconfiguring | restructuring | renovation for about a year or 2 now, and fitting this new thing into that newly not-quite-fully erected spiritual scaffolding has been interesting. but i am still, and firmly, a believer in the ultimate redemption of an ultimately loving Creator. and i am fully convinced that the prayers of others have sustained me over these weeks. so i continue to pray. i plead, yes. but i praise, too. because in the midst of these unexpected clouds, have been some amazing and wonderful bursts of sunlight.
i hope. and i will hope. and my boys and i will lean into the many literal and figurative arms of support we continue to be surrounded with.