Grace, “the love and mercy given to us by God because God desires us to have it, not necessarily because of anything we have done to earn it.” I am not a huge Wikipedia fan, but I thought this was a succinct definition. In other words, Grace is when something totally wonderful happens to us when we completely don’t deserve it. Mouse’s middle name is Grace. I never thought I would even be able to have one baby, let alone two, in rapid succession. My children are my gift of grace.
Coming out of his last seizure, Boo had a tough week. We started him on a low dose of Keppra, which seemed to hold the seizures at bay. Having been warned about “Keppra rages”, we also had him on vitamin B6. I did not see any rage, but something was off. His anxiety shot through the roof. He was stimming and biting himself. On the last night he was on the Keppra, he could not sleep at all. For 10 hours straight he bounced off the walls and made odd, painful keening noises. We were extremely worried because lack of sleep seems to be what triggers the seizures. The next morning I was on the phone with neurology at Gillette Children’s Hospital. I have to give the doctors and nurses there top marks. Though I spent most of the day on the phone with them, at the end of the day I had Boo off the Keppra and with a new prescription for Topomax. I was uneasy about starting yet another med, but I had to get this child some relief. We picked up the Topomax at the pharmacy and I sent a small prayer into the universe. That night, Boo slept for 10 hours straight. The next morning I walked into his room and he sat up in bed, looked me straight in the eye and smiled. It was if he were saying, “Hi mom, I am back.” To me, he felt more physically and spiritually present than he had in weeks. I was hopeful. This did not completely end the insomnia, but some further tweeking of one of his night meds (done by his fabulous nurse practitioner, Jane Marie) seemed to do the trick. He began sleeping soundly and deeply. Though I was warned that Topomax can cause cognitive decline and weight loss, I am not yet worried. We are starting at a very low dose and gradually titrating up (it will take 5 weeks) to a therapeutic dose. Neurology had told me that if I saw anything odd or off I was to call them immediately. Just knowing I have them on speed dial helps my peace of mind immensely.
Boo is off school this week and having a wonderful time going on adventures with A, his beloved PCA. She decided that they needed to go tubing down the river, that spending three hours floating in the water was exactly what Boo needed to relax and celebrate his upcoming sixteenth birthday. With a little trepidation I gave permission and off they went. She even figured out how to keep his rescue meds at hand in a water proof container. Midway through the day I got a text from her. It was a picture of Boo, stretched out on an inner tube in the middle of the river. The sun is beating down on him, his eyes are closed and his face is a picture of utter relaxation and delight. I will treasure this picture forever. Truly, Boo was having his moment of grace. Late in the day they returned from their adventure. He was not even sunburned, thanks to the copious layers of sunblock she had applied. He drank about a gallon of water, swallowed his evening meds and staggered into bed. A related the rest of the day to me. They had driven way out into the country to go tubing. On their arrival they stopped at a small cafe. A told Boo to remember to use his restaurant manners. She has been working very hard on this with him the last few months. Boo did not drop a thing or make a mess. She chatted with the waitress and told her they were from St. Paul and that they were going tubing to celebrate Boo’s sixteenth birthday. At the conclusion of the meal, she took him to wash his hands. When she returned to pay, the waitress told her another patron had already paid for their meal because she heard someone was celebrating a birthday. A was deeply touched and tried to tip the waitress who declined and said that had been covered, too. A nearly cried and the waitress told her, “You go, super girl, and have a great day.” Boo and A walked out into the sunshine, once again touched by grace.
I would not wish the last two weeks on anyone, particularly not on Boo. We all have been operating on the bare minimum of sleep. (Yes, it is possible to go for over 72 hours without sleeping, no I do not recommend it. Reality gets a little sketchy at that point.) But, there are things I will hold in my heart and mind and treasure. The fact that someone saw past Boo’s obvious disabilities and yet wanted to buy him lunch because turning sixteen is an awesome milestone. The picture of Boo sprawled on an inner tube, face pointed towards the sun, a picture of utter relaxation. The look on Boo’s face when he woke up off the Keppra and smiled at me, telling me he was back among the living. The knowledge that he has a team of doctors and wonderful PCAs who will always do their best by him. These things I will hold in my heart. The knowledge that I was never supposed to be able to have children, yet somehow had two. Grace, when something wonderful happens to us even when we least deserve it. To the universe, I say thank you.