Lilli had a seizure last night.
"As many times as we go through this, I never get used to it," my husband said afterwards.
Lilli's seizures are an important part of Lilli's story. Of our story as her parents. When Lilli was born, she stopped breathing twice right in the delivery room. Then she was whisked off to the nursery as they finished my c section. In the nursery, she stopped breathing again and the pediatrician diagnosed her with seizures. She was in the NICU for 11 days.
On the first day that we brought her home from the hospital, we had to give her seizure meds with a dropper. It took a half hour to get a teeny amount into her, and by the time we finished we were both sweating. This was horribly bad tasting medicine and she gagged the entire time.
Then came 6 years of scary, drug-resistant seizures, lots of trips to the ER, 3 different seizure drugs with awful side effects, lost skills such as chewing food and saying words, and an uncountable amount of sleep lost. One memorable nightmarish ride to the hospital I was eight months pregnant. It took 45 minutes to get there and Lilli laid on my stomach, limp, throwing up and seizing the entire ride. Lilli has a lot of issues, but I think my husband would agree that if we could pick one to be miraculously taken away, it would be her seizures.
We think we are on the right track with diet and chiropractic care. That combo seems to have lessened the severity and frequency of her seizures. So it's better than it was.
In a weird way, Lilli's seizures lead us to have hope. Hope that one year, soon, she will go all year without a seizure. Hope that she can be completely off seizure meds so we can see how she is, how she feels, who she is medicine-free. Hope that all of this is not for nothing, that it is for a purpose. Hope for heaven, and thoughts that someday Lilli WILL be seizure free there, and we will never have to worry about any of this again.
People may think I'm crazy for my faith in God, or narrow minded, or whatever. But in a situation like ours, what else can we put our faith and hope in? Certainly not the doctors, who put Lilli on one drug that ended up with such awful side effects that I call it "the worst year of our lives."
There is a verse in Romans 5 that says that "suffering produces perseverance, perseverance, character, and character, hope." I have thought long and hard about that verse.
Through suffering with our daughter's medical issues for the last 6 and a half years, we have persevered in trying to help her in as many ways as we can. As we have persevered through many therapies, doctors appointments, hospital visits, putting her on a special diet, and persuing better health for her, we have grown. I guess you can say it has given us more character, more wisdom, In experiencing all of it, we have come to see that there is only one way to live life in the face of great suffering, and that is to have HOPE. What is life without something to live for, something in which to have hope? We cannot cure our daughter, doctors and medicine and diets cannot cure. Only God can cure. And if God chooses not to cure her while she is on earth for His reasons, He promises she will be cured in heaven! So that is where I put my hope. My hope is in God's promises.
I hope and long with all my heart that Lilli's seizures will go away one day. It is possible. One neurologist told us that in Lilli's case, her chances of growing out of having seizures is about a 1 percent chance.
So we can hope for that and continue to pray for miracles.