A couple of months ago, I had a quick minute when the kids were occupied in the late afternoon and I took advantage of that time with a frantic, end-of-the-day cleaning session.
As I put away laundry in Brenna's room, my eyes settled on her big pink picture frame that hung above her changing table. Aquaphor smudges almost completely covered the bottom part of the frame and even extended up onto the picture itself, from where Brenna had reached up and grabbed at the frame.
I smiled so knowingly, so lovingly, that in that second, I recognized a new feeling in my personal journey since Brenna's birth. I am still grappling with how to describe it, but it was a feeling of not just acceptance and trust in God, but an all-encompassing love…a love where I can see clearly each of my kids' unique characteristic, physical attributes, little quirks and personalities, and love those things, all of those things, exactly as God has created them.
I realized I have passed over into a new phase of Brenna's health diagnosis.
I don't just accept her condition… I find every little part of her so endearing and so love-able.
I see the piles of skin she leaves behind and I smile.
(And I had to laugh the other day when Connor pointed to a spot on his bed, where Brenna had been sitting, and exclaimed, "Uh oh! Crumbs!")
Aquaphor smudges no longer bring tears, but instead they carry a new meaning. If there is Aquaphor on my shirt, that means I have been snuggling with my baby girl. If there is Aquaphor on the couch, that means that Brenna has insisted on sitting up there next to her brother like a big girl. If there is Aquaphor stained all over our board books, it is simply because our sweet girl is enamored by the words and pictures inside, insisting "buh! buh!" for book at every spare moment.
I am discovering that all of the things I originally saw as something that made our family different - the extra laundry and Aquaphor stains, the skin shedding, the therapy, the cooling vest, the syringes and medicine spread out on our kitchen counter - these pieces of our life have new meaning to me now.
These pieces of our life mean that our little girl is alive and thriving. They mean that our house is filled with joy and love and more concern for our children than our clothes and furniture and opinions from anyone else.
These pieces of our life are more endearing to me than I ever thought they'd be, more beautiful that I ever imagined, and truly much less "different" than the world thinks they are.