Feb 26, 2016 (Scott)
It’s so nice to be home and free to move about. The new house has a formal dining room which is overflowing with toys–it’s better as a playroom anyway since there’s nothing formal about dining with a 3 and 1 year old.
Maya’s energy has been low. We left Oakland expecting she’d need another transfusion of red blood cells soon, and it’s likely the altitude made things even more difficult on her. She naps off and on through the day. The daily steroid treatment makes her restless, but she doesn’t have much energy to do anything but lay in bed or on the couch.
Yesterday after Lincoln woke up from his afternoon nap, he and I were playing ball and exploring together in his new room. Maya heard us from the princess room next door; she pulled herself out of bed, walked slowly into Lincoln’s room, and stretched out on the floor. Lincoln immediately flopped on top of her–they both laughed and jibber-jabbered away in ‘Lincoln language.’ Maya didn’t have the energy to rough-house, but she asked mommy for a pillow so she could be comfortable on the floor while playing ball with her little buddy.
Maya’s body is working hard to recover the healthy cells that have been crowded out by the leukemic ones or wiped out by the drugs. But her spirit is healthy and pushing to play, explore, and connect with her new surroundings and her family–especially with Lincoln whom she missed so much over the past twelve days. It’s hard to watch her toss and turn in bed through an entire afternoon, but all the while she talks about the things she wants to do–play with Bapa (Grandpa), go to Home Depot with me (she loves that place, and why not–it’s awesome), or go outside to blow bubbles and watch Pelei (our dog) lose her mind chasing them all over the yard.
Through all this, energy will come and go, but thankfully the dragon spirit is constant.
Thank you all so much for your kind words, prayers, and humbling generosity. Having left the hospital there’s this natural feeling that the struggle is over–that all is okay now and Maya will be right back to normal any moment. Of course, the reality is that we’re still at the very beginning, and our lives have been flipped sideways. It’s scary to think about what may be ahead, but the collective focus of so many who would go so far out of their way to offer a helping hand gives us confidence we can handle what may come.
We are forever grateful.
(These photos are from this January on Kauai)