6/21/18, Day +50 Finger Pricks and Fire Pits

Reese’s fight against gvhd continues and we saw hints of improvement over the past day. This promise of better is inspiring and it gives us so much strength! She is starting two new cutting edge meds tonight that take a few weeks to show results, but they are the best things out there for Reese. We are so thankful our doctors 1. know about them and 2. were able to procure them. In the meantime, having anything by mouth upsets Reese’s damaged tummy, even water. Most of you haven’t been on high dose steroids, but if you had, you would know that it makes you ravenous. So so hungry. One of our doctors explained a four-year-old on steroids to us early on, and the occasional prescription of antipsychotics that is needed, because a four-year-old can’t comprehend why they feel the way they do to manage the feelings.
This brings me to my next point, I would like to introduce you to bravery. It comes in the form of an itty-bitty blond four-year-old named Reese. Bravery is defined as courageous behavior or character. To me courageous behavior can be looked at two ways. A courageous purposeful positive action and also the lack of a negative crazy negative response to something new and scary.
In the past few days, Reese has had to endure extra new tests on top of her already hectic schedule of pain and to use her words, “upsetting” circumstances. This includes a CT scan, EKG, and finger pricks for glucose levels. All of these are things that would send a normal preschooler I know into a bit of a tizzy. Reese doesn’t choose these things, she isn’t asking for them. How does this make her brave? This little 28 lb peanut doesn’t protest and doesn’t cry. She sticks out her finger, lower lip trembling through a fiercely tightened jaw, and she shows them where they can prick. She enters the CT scan, a look of determination on her face, and let’s mommy’s hand slip away while she slides into a tunnel of unknown. She watches intently while a dozen stickers are placed all over her body and attached to a machine. Why? Because it will make her better. 
So, what does Reese want? Reese wants to have a tea party. And drink tea. She has been asking for this and she even added it to the end of our prayer last night. It seems simple but to her it seems too far away. So tonight, we talked about dreams. If you can dream it, you can do it. Then I added my wish to our prayer as well.
When we bought our new house, and moved in late fall last year, I was so excited for spring to come. Since the day we put in our offer, I dreamed about our backyard. There is a yard for the kids to run, a deck with a table big enough to fit my whole family, and a fire pit to roast s’mores. I had visions of finishing up a BBQ and watching the kids roast marshmallows (who am I kidding, I eat the most, every time) while the fire flies appear for the evening. I would look out the window all winter and imagine this, my perfect evening. I described this to Reese, and told her that I dream it because I will do it. My family WILL have this night, together. I told her to dream big, to fall asleep dreaming about her tea party. Because if she can dream it, she has proven that she CAN do it.

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