A Little Magic
April 15, 2019 Update:
Over the course of the last week, Asher’s symptoms, though still significant, have plateaued to the point that his doctors and nurses agree with the family that a short getaway is worth attempting. To that end, the Ammons family will be traveling to Florida this morning to visit Universal Studios in Orlando, and to see family living in that area. Air travel remains a risk for Asher, so we will be traveling by car. Please pray that Asher’s symptoms would remain stable, and for safety and wisdom in traveling.
To this day, I’m still surprised we made this trip. It felt so risky feeling as though Asher could crash at any moment. His inability to be mobile made it such that he had to ride in the front passenger’s seat all of the time. It actually worked out okay, because either Leah or myself would sit directly behind him, and be able to reach him and give him what he needed with a little bit more ease.
There was a somberness to it as well. I still had the final arrangements directive in my head. During one of my shifts in the back seat, I opened my laptop, and in the midst of the uncertainty of knowing he could go from “stable” to “crashing” again at any moment, I began to write his obituary, with the hope that I would never have to use it.
Prior to getting sick, Asher had begun to read and appreciate some of the Harry Potter books. It was kind of his thing at the moment, so he was excited to visit the Wizarding World at Universal Studios. The people were amazing, and we had a blast. It was a great relief for a boy who was struggling on the outside and the inside. He needed a change of scenery.
Asher is struggling in every aspect: physically, mentally, emotionally, and spiritually. He has been unable to walk for three weeks, as he can no longer use any of the limbs on the left side of his body with any meaningful strength. If he’s not being pushed in a wheelchair, he must be carried everywhere he needs or wants to go. He has varying degrees of trouble eating, swallowing, and using the bathroom. He has mild tremors in his head. The last MRI showed that a cyst has formed at the site of the biopsy, causing the palsy in the right side of his face to return, including the loss of much of the control of his right eye. He also has a constant fatigue that never leaves him, practically forcing him into multiple naps per day, frustrating him, often to tears.
On top of all of that is a high dose of steroids that intensifies most of his emotions, and gives him a hunger for food that is rarely satisfied, and it’s simply a great burden for anyone, especially a child, to bear.
All of this has led to some deep heartache for Asher. He sees his peers running around and playing in ways that he cannot, and he is hurt, and has expressed that he often feels abandoned by God lately. These are difficult areas to shepherd our son through. We need your continued prayers for us that his faith would be strengthened, and that as parents, we would remain strong in our faith, and that we could navigate these difficult conversations with truth in love and grace, especially in the midst of our own heartache as parents. Also, pray for the other parents whose children are close to Asher, and will inevitably be asked questions like “Why would God let this happen to Asher?”
These are heavy days for us, that often feel heavier as the days wear on. We are keenly aware of our helplessness. Pray that we would be convinced of the sufficiency of God’s grace, knowing that his power is made perfect in weakness.