There’s been so much to say, but where to start? How to even make it readable, worthy to share? I’ve worried it would just turn into one big long spew of pain that would leave people clicking away from the page as fast as they arrived. And yet I need to share, because I know so many others out there travel this journey as well.
My sidekick, my Empress, her voice has grown a little dimmer these days in a way that is both hard and terrifying to describe. I’ve enjoyed punctuating my blog over the last few years with certain tidbits that bring out the spirit of who she is, this amazing child of mine.
Like this, My Empress, in all her glory, when we went our for a bit of very much deserved Girl Time before her first day of school. The agenda: a haircut and Sparkly Clothes. And, as it turned out, Sparkly Accessories at the infamous Claire’s (I remember going there in the 80s, and it hasn’t changed a bit.)
But how do I wrap my head, my heart, around the disconnect, the reality of just how much has changed the last few years? This photo was taken within a few weeks of the first. Not so Sparkly, but just as real, inpatient after her 3rd bronchoscopy and 7th PICC line placement.
The medical needs in themselves aren’t new. Yes, they are discouraging, yes they make me sad, but we are used to them. The real difficulty lies in that those ‘Epic’ moments come so much less often than they used to, it’s getting so much harder to find these opportunities where she looks (and more importantly, feels) healthy and strong. It’s so hard to sustain this fight sometimes, and that scares me as it is only just beginning. She spent the summer on her CF sick plan and when that didn’t work, we capped off the month of August with the admission pictured above to start 21 days of IV antibiotics.
Appointments in recent weeks with a few other specialists highlighted ongoing concerns and the plans for dealing with them in coming years. Add to the list.
She has an inpatient stay in a few weeks at one of the best epilepsy centers in the country for prolonged video EEG monitoring, PET scan, SPECT scan, and high-resolution MRI to see if we can better get to the bottom of her recent cognitive decline and other issues.
It’s just all so much to juggle… for both of us. If I feel pushed beyond my limits, how much can one child take on?
Clichés telling me to *just stay positive* don’t work anymore in the face of such overwhelming changes, when I can see the impact every day, when I can see her slipping no matter what we do. Pat words ring hollow among the stark realities faced by a child who has little comprehension of why, due to her other disabilities.
As always, I turn to my flowers for solace, for peace, for healing. They were glorious this year, and they do bring me peace.
But it is also painful when I can share in bringing such beauty from the earth, and yet cannot preserve the beauty in my child’s life, who holds my very heart in her hands.