I have to admit…I dragged myself to the computer to blog today. Nothing is dramatically wrong, but sometimes it’s harder when things are just a little bit off, only slightly “not right.” That’s where it seem we are with our sweet girl. She still gives smiles by the buckets, is enjoying reading, painting, and her movies, but is just not herself.
I think it has to do with her tummy. We will see a new GI this Wednesday to see if together we can figure this out. To admit my paranoia, I must tell you that I’ve read of several families recently who’ve dealt with rather aggressive and totally unexpected infections around G-tube sites. One of the girls died. So….as she refuses to sit in her stroller, whimpers as she reaches for her knees, and cries sometimes when her feedings begin my mind rockets off the launching pad directly towards the darkest thoughts and worst scenarios. I am just hoping for answers. By now, I can deal with just about anything as long as it has a face and name.
We are rebounding from a tiring and emotional week. Ray was out of town, so of course the stomach flu came to visit. First RJ swooned, then Matt swayed, and by Friday afternoon I collapsed in a dysfunctional heap. Matt (recovered by then), stayed awake in Abbie’s room until after midnight so that I could rest on the floor. He ended up sleeping in the recliner – my loving, caring hero that night.
Saturday brought to the fore the emotions Ray and I had been sorting through all week. That evening was a wonderful event celebrating Kapiolani hospital’s 100th birthday. This is where Abbie’s life was saved, and where Ray serves as CEO. The program was all about the impact of the hospital — from being greeted by young children in t-shirts reading “Beating Leukemia” or “Born Under 2 pounds” (my tears started early), to vignettes from families who received life-saving care. It was finally Ray’s turn. He usually only speaks as CEO, but this night he was also Abbie’s dad, which required me to find photographs to accompany his short speech.
This task broke my heart. As I wrote to a friend, “Time has helped dull the razor edges of our loss, but seeing her pictures from before makes us think, once again, what could have/should have/would have been.” Honestly, I was dreading seeing her bright, shiny, sassy picture on those giant screens.
Flash – there she was – brand new yellow sandals with white flowers, a dress with the connected panties unsnapped and hanging down, smile to light a stadium. Flash – on a ventilator, wearing her Elmo hospital gown. So small, so hurt, so helpless. One more flash brought our smiling girl back, in the pool in the arms of her Daddy. Older, different, but as beautiful and precious as ever. I held my breath through the whole speech.
In the darkness I sat in vulnerable silence, only crying on the inside. Then, the Mayor, who was sitting next to Ray’s chair reached over and pulled me into a hug, at which point the tears came. After living this story for so long, I didn’t know that it would be so hard to share, face-to-face, with that many people. It’s hard even writing about it now — being so exposed, I guess. Showing people, through the photographs, exactly what we lost, and what we have been given.
But, the last thought that comes to my mind is, “I couldn’t be prouder of her.”