While we have so much to be grateful for in regards to Luella it's also hard not to think of everything that's been taken away with these seizures too (and what more we might lose). Dravet syndrome is not fair. I try to not dwell on the negative, but I'm only human and there are times when it takes over. Thankfully I have my faith to fall back on when I don't know what else to do. You've probably noticed the verse I posted at the top of the blog from Deuteronomy 31:8
The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.I have that verse hanging up too and I look at it often. I say it over and over again in my head. I know that God is always with Luella and us every step of the way.
We've tried to do too many fun things in the past week or so and Luella has had four seizures now in just 10 days. She actually had one yesterday on her seizure anniversary. :-( Play lands, fairs, children's museums, parks, water parks, etc... they are all too much fun and too much fun can be a seizure trigger. Thankfully up until this point this summer she has maintained more of a one-a-week average for seizures so hopefully things will settle down again. We ask for prayers that Luella would have fewer seizures especially as we try to squeeze in a few more fun things before school starts! (Yikes! School? Maybe pray for me too!!)
I think about Luella's prayer. The prayer she says every night before she goes to bed... "Please take my seizures away." I think about the prayers of Luella's sister and brothers. Every night they ask God to take Luella's seizures away. I know they have asked in the past why God hasn't taken the seizures away. Why He still lets Luella have seizures. We've answered that we don't know why. That it is difficult to understand and someday it'll all become clear to us. I recently read a great blog post by another mom with a child who has epilepsy who addressed this very topic. I love how she answered the question and the scripture she quoted from Romans 5:3 - 4
But we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.I think I'm far from rejoicing in suffering..... but I still have hope.