8/28/18 BMT Day +118 Pink Beard the Pirate

Today the physical therapist spent some time with Reese. She observed her, joined us in our room (and brought us another floor mat, score!) and commented on her amazing recovery. We have been enthusiastically helping Reese regain her strength and she is just as eager to get moving. Today the physical therapist gave us some new moves, but she told me that physical therapy isn’t going to be what makes Reese the strongest. She told me, in her wealth of experience, there is only one therapy that will really make all the difference for a BMT child like Reese.


And she has this in spades. The love of family is the best medicine. And believe me, love is showered on this little girl. Today I watched Nonnie and Poppy shower Reese with this priceless, unconditional love and I realized again the monumental role family is playing in Reese’s recovery. I watched Quinn hug Reese as they shared a laugh and Claire run to her as she entered the door. And daddy. This past weekend, Reese had daddy wrapped about her little finger. As she should.

Nonnie purchased Reese a new Pinkalicious book about Pink Beard, the pirate. Well, Reese loves to play “boats”. It is a way for her to participate in play, even though she can’t play the traditional way. She isn’t strong enough, and she is on too many pain meds, to really “play.” But she can be part of the game, by being in the boat. So, I often hear the questions, “Mommy, can we play boats?? When are Nonnie and Poppy coming over to play boats?” Boats is a game Reese made up.. her bed is a boat, Quinn is usually in her boat, Claire zips around in a little (tug)boat, Nonnie is a sea mammal of some kind, and Poppy is a pirate. Pink Beard the pirate. We shoot cannons at him (unicorn poppers) until he sinks… you get the idea. Well, on Saturday, Pink Beard really did show up at the hospital. (See pic in gallery.) Only Poppy.

As Reese’s flare flares out, I am happy to report that it looks like this should only tack on minimal time to our already lengthened hospital stay. Reese’s last flare set us back a month, and I am so thankful that this is not the case again. Our current trajectory has me praying we will be home for Christmas. I think it is a realistic goal and I am already dreaming about our Christmas tree (it will need to be fake this year, of course), our elves on the shelves (yes, we have three, a long story), and baking up a storm in my kitchen. In the meantime, I am timidly contemplating Halloween at the BMT and of course turkey dinner. I know that I am so blessed that my family will be together for all of these holidays, wherever we are. I am so thankful. (But still hoping to be jingling all the way to Illinois come December!!)

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