I am a day out for June’s letter. That just means that you get two letters this month! My brain is crowded with memories from our trip up north a few weeks ago, conversations with your specialists and busy weekends. Summer is providing us with plenty to keep our schedules extra full. And I love it. Because I know that we could be in the hospital and thankfully we’re not.
Summer looks a lot like this:
Little swimsuit tan lines, the smell of sunscreen, and late nights by a campfire are all what is making our summer extra enjoyable.
We went up north in June with all of Daddy’s family. One of the best moments of the trip was when we visited the wild life park.
We were swarmed by parakeets and followed by hungry goats. You and a goat shared a biscuit. You laughed at the deer and the peacocks that roamed the park.
The trip gave you a break from appointments. For the first time in a long time, you were free of frustration. And if your MDS was bothering you, I certainly didn’t know it. I watched in awe as you played alongside your cousins. This trip was an outlet for your curiosity. You turned into such a big girl in that week.
No more straw sippy cups, using a fork while you eat, walking with push toys all over the place, climbing your jungle gym, etc. What’s next?!!
While answers remain unknown for a treatment option for you, I am not losing hope…gaining frustration, but certainly not losing hope. People always say, “…can’t she catch a break,” or “…what next…” and I see the frustration in them that wants so much for you to be healthy. I wish you knew how many people want to help. I wish you knew how your story touches them. I hope you feel the love around you because it is amazing. Your strength is inspiring. Even though my heart hurts wondering if we will ever come across a treatment, I will never feed the fear.
You are one in a million. You are my hero.