I feel compelled to write about what my family has been through this weekend, but honestly, I don't really know where I'm going with it. How do you write about staring your greatest fears in the face - especially when the emotions are so fresh? So I think I'll begin at the beginning and trust that God will wrap it up for me.
On Wednesday evening about 11:30, Chuck woke me up from a sound sleep (it was his night for Shelby duty) to tell me Shelby was having gran mal seizures that would not stop. It had been an hour since her first episode and she was clustering (seizures one right after the other with very little recovery in between) despite being given a dose of rectal valium. We were apprehensive of exceeding that initial dose of such a strong drug because in it's efforts to slow down the misfirings of her brain, the meds slow down her whole body. Including respiration. We have been there before. We watched our then 18 month old daughter be intubated after she stopped breathing, and could not risk that happening at home. We needed to be in a hospital with constant monitoring.
These types of seizures used to be our "normal". When Shelby was a toddler, she had status epilepticus (seizures that don't stop without medical intervention) as least once a week. The longest one lasted an hour and fifteen minutes before hospital personnel got it under control. In those days, she was so small that we would scoop her up and drive her to the hospital in my lap - always assuming that we could be quicker than waiting on an ambulance. This time, we needed help to move a 150 pound 17 year old. For the first time in Shelby's life, we called an ambulance. We have a fire station about three blocks away, so the wait was short. She and I rode with the medics to the hospital.
Once arriving at the hospital, Shelby enjoyed a respite from seizures for a few hours as I sat by her bed in the ER. I wondered if we had jumped the gun by involving the hospital, but this proved to be the calm before the storm. She seized a few times in the early morning hours, but real trouble descended on her around lunch time on Thursday. She clustered - seizing for 10 minutes and resting for one or two before starting over again. This terrifying pattern repeated itself for two hours straight while the Emergency Room doc pumped her full of one anti-convulsant after another. She had 7 or 8 doses of 3 different medicines before she finally rested again. About 2:30, the doctor in charge decided to move her to the ICU for constant monitoring should she need more meds - fearing that the next dose could be the one to shut her system down, causing intubation again. Thankfully, that never happened.
Shelby rested peacefully in ICU - her body worn out from the seizures and significantly altered by the sheer volume of strong medications. She couldn't walk, needed help eating, and slurred her words. But I slept along with her our second night in the hospital. My body finally relented under the weight of physical exhaustion, and my mind relaxed as I released the fear of loosing my child. Since Shelby continued to stabilize, she busted out of the hospital Friday and we rejoice to watch her strength and abilities slowly returning. We are so grateful for all the prayers lifted up on her behalf.
Last Sunday, our preacher told a story that came back to me in the frightened tears I cried by my daughter's bedside. He spoke of a man he knew who had cancer. When others commented on how well this man handled his illness, he testified to the "Cancer grace" God had given him . I firmly believe that God gives us what we need, when we need it. But we shouldn't expect to have it BEFORE we need it. Years ago, when these trips to the hospital were commonplace for us, friends and family would often comment that they would never be able to handle it the way we did. And I cry "Bull". My husband and I have been given "seizure grace" to handle whatever comes Shelby's way. And if you had a child with Dravet Syndrome, you would be given "seizure grace" as well. Just as God said to Paul in 2 Corinthians 12:9, He promises us, "My grace is sufficient for you, for my power is made perfect in weakness." I confess that since I haven't exercised this particular grace muscle in a while, I did some serious praying - which is exactly what scripture tells us to do. "Let us then approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16
As we now enjoy the quiet on THIS side of the crisis, we continue to pray. We obviously have poor seizure control right now and need to make some decisions concerning Shelby's treatment. And "seizure grace"does not make this road easy. That's not a promise we've been given. But we are cradled in the assurance that God has this. And He has us. He gives us everything we need to face whatever comes. And, for now, we lean on this: "I have given rest to the weary and joy to the sorrowing." Jeremiah 35:21