8:12 P.M. Thursday, November 17, 2016…Date STAMP…the last dose of Felbamate given to Gabriel. A few weeks earlier, 9 milliliters had gone into his body, just like everyday for almost 3 years. On Thursday night 1 mL went in. The last dose of the little pink liquid that saved our boys life. *See Footnote
I am typing this Sunday morning and we have not seen any seizure activity YET. Yet…Rrrrgh…that one little word can hold so much…so much hope, so much fear, so much light or darkness.
During this medicine wean I have kept the image of a mountaineer repelling down a cliff. Picturing ourselves beginning the descent, 1/3 of the way down, 1/2 way down, 2/3 of the way down 3/4 of the way down. Friday evening at 8:00 PM (medicine time)it felt like we had landed. Not only landed, but had firm footing, had unhooked our repelling gear, and were beginning to pack it up for the next leg of our adventure with Doose. The phrase “The Eagle Has Landed”, famously uttered by Neil Armstrong when humans first landed on the moon decades ago, kept running through my mind.
The date of the first moon landing is burned into my memory-July 20th. July 20th was my Dad’s birthday. It seemed like every year on his birthday my dad would talk about the moon landing, Neil Armstrong and Buzz Aldrin. It seems fitting that the iconic phrase was ringing through my head as our family completed a BIG step on our own dream mission. I find myself unendingly thankful for the countless people who have supported us, cared for us, prayed with us, fed us, laughed and cried with us over the years! I find myself typing this wishing for the 10 millionth time, as I have so many other events this last year, that Dad was here to see this. He would be so happy for G (and us). One of the last conversations I had with my Dad was about how GOOD G was doing and how glad he was for that. I don’t know how eternity works but I hope somehow Dad is getting to see or be a part of this…I wonder of the ARMSTRONG phase in my mind is God’s way of connecting us.
Anyway for now…our family is on solid ground! There are more mountains to climb. In general Gabriel is about 2 years behind developmentally. In some areas more, in some less. Our job for now is to continue to support, empower and advocate for him as he navigates life. As we step into the next phase I find comfort, hope and strength in Psalm 121 ,”I lift my eyes until the hills, where does my help come from? My Help comes from the LORD, maker of heaven and earth”
FOOTNOTE *I always waver on whether or not it really SAVED his life….it sounds so dramatic to phrase it that way….but it is true. Heartbreakingly true…there are children with Gabriel’s syndrome (and many others “related” to it), that the lack of seizure freedom and/or SUDEP (sudden unexpected death in epilepsy) ends their lives. There is also the cruel, yet ever present reality that the seizures can return any day. One of the families that has been a guiding light for us in our Doose journey is experiencing a recurrence of seizure after 4 years of seizure freedom. The seizures were most likely brought on by onset of puberty. Please PRAY for ZAKI and his family–they are WARRIORS in this battle!