Drake is on day two of still seizing. He did have a few times last night that he was able to sleep. He only had about 5-7 seizures throughout the night, and then this morning he started up again, having one about every 15-20 minutes. He seems to be slightly more aware… just still a long few days ahead. I was able to draw blood yesterday before we made adjustments to his medicines. We will have to wait until Monday to send it to the lab, but at the very least we can have some insight into what happened, and why he went so south this time. We pray it will give us knowledge, and we can learn what to change, or how to do it better, for the next time we attempt to move forward.
People say to us all the time..”I don’t see how you do what you do for Drake”.. and we understand what they mean… but I think we are doing what any parent would do when their child is diagnosed with a progressive, terminal disease at birth. We don’t want Drake to suffer, we don’t ever want to push Drake too hard… but the only way I can think to describe living life with a terminal disease ….is being on an island. Not a nice island where everyone has their own space, and you have amazing views from all sides…. think more like a sandbar. You know going to the sand bar that your time is limited… so you have fun, you play…but you always have to keep your eye on the time, the rising tide, and you have to be planning your exit strategy to make sure you, and your loved ones, get off that sandbar with all your belongings in tow. Now imagine that with your child’s life. Imagine it pouring rain, the waves are fierce, and you are trying your best to keep your feet planted on that little, disappearing sand perch, all while trusting and praying God will calm the storm.
With God we don’t need a boat… we don’t even need to make our own raft… when it is His time.. Drake will walk on water. And we do feel God has given us so much hope with treatment for Drake’s disease. God will not always remove the storm from your life, but He will give you a way out….in His perfect timing… All will make sense, all will come together, and every hard ship or every set back, and every delay will be clear of how it laid the stepping stones to get us off this sandbar.
We took a step forward with the treatment for Drake… and somewhere we messed up. Our doctors are phenomenal and they allow us to lead Drake’s care. They support and help us research, we even work closes with the researchers to ensure we have all the knowledge possible before moving forward… but there is just no research yet (with your financial support it has begun) to guide us on this new step. We spend days calculating, we created new schedules, and we drew blood… we prayed for wisdom and protection… and then we stepped off the sandbar. But the waves pick up, and the rain started….the seizures are too strong, and the unknown is too great…and God once again whispered “not yet my child”. We never like to have to go back to our sandbar… it is and will never be a place of “comfort”… we have learned to trust that God withholds steps moving forward, because the next stone was not firmly in place. But I would be lying if I said failure was easy in Drake’s situation.
We have taken Drake back to his old schedule effective yesterday afternoon. He is very weak, and the seizures are relentless, not allowing his body to rest. Please pray the seizures calm. Even with the adjustment yesterday we have three days to wait for his glycine to adjust. Please pray his brain stays protected and there isn’t damaged, or regression. Please pray he knows we love him, and would never put him through anything that wasn’t absolutely necessary to try to save his life.
There is no real treatment, there is no cure for NKH…. we either fight hard for the things we feel God has given us….. or we don’t….and we wait for the tide to rise.
Three to five years….. three to five years is what the doctors has given our boy, after he made it past the first original diagnosis of weeks to months. Drake will be two in October. And as long as God gives him breath in his lungs, and the desire to fight….so will we. We will fight to keep our feet planted in the sand, and our eyes looking up to Jesus… because HE IS FAITHFUL…. and we too will be faithful to wait for Him…….whatever the storm.
Mark 4:37-41
37 And a great windstorm arose, and the waves were breaking into the boat, so that the boat was already filling. 38 But he was in the stern, asleep on the cushion. And they woke him and said to him, “Teacher, do you not care that we are perishing?” 39 And he awoke and rebuked the wind and said to the sea, “Peace! Be still!” And the wind ceased, and there was a great calm. 40 He said to them, “Why are you so afraid? Have you still no faith?” 41 And they were filled with great fear and said to one another, “Who then is this, that even the wind and the sea obey him?”
We love you and thank you for your prayers,
Eric, Tarah, littles and Drake