“Dear Mom-
Happy Mother’s Day! I wish so badly that you could hear me say but you are the best mom, and you need to know how much I love you, and I am so grateful you are my mom! Thank you for your love, patience, and constant care for me. I know our journey is rough at times, but God is working in both of our lives. I love you, Mom! May God continue to give us both strength and grace!
Your loving son,
Philip"
Just like you probably do right now, I immediately had tears in my eyes. I was sitting in my ensemble practice by then and had to excuse myself to just take a minute to process it. I wasn’t expecting something like that at all. It was extremely thoughtful of someone to do that. I may never know who it was and that’s okay. The Lord used it to encourage my heart. It also reminded me that people are watching all the time. If you’re reading this and it was you who gave me the card, thank you for being used of the Lord to encourage my heart. Thanks for being thoughtful.
Philip continues with good days and bad. I think though that we can definitely see the regression more clearly again. I don’t know that it is going faster; it may be just that after several months, we can see the bigger picture. That does get pretty discouraging because we don’t really see an end to the seizures in sight. My heart breaks for him to continue to go downhill. It’s hard to watch and not be able to physically do anything. There are plenty of tears from time to time on the one hand but on the other, a peace so sweet and grace that’s almost tangible. I am so thankful that God is answering my prayer and is guarding my heart from bitterness. I know that God is always right and God is always good and not only do I know it, I feel it. That may sound weird, but it’s part of the grace He has so freely given.
A couple of weeks ago, we thought a door was opening for another treatment option. The legislature of the state of Oklahoma was reviewing a law that would allow cannabis oil to be used medicinally, one use specifically for children with intractable epilepsy. We did our research because we wanted to understand exactly what it was and wasn’t. It is not medical marijuana, although it is derived from the same plant. The pharmaceutical process takes the plant and extracts cannabidiol (CBD) without any hallucinogenic properties. The oil is then ingested as a medicine. It has shown great promise for epilepsy in children. The house, senate and governor passed the law a couple of weeks ago. We found out Philip’s doctor was involved in a clinical trial that will be happening in July through OU Children’s. We contacted her the day we found out about it to let her know we were interested. After the usual wait in communication, we were directed to the research coordinator who informed me that this clinical trial was only open to children diagnosed with Lennox-Gastaut or Dravet syndrome. Philip is diagnosed with neither. His condition closely resembles Lennox-Gastaut but his seizure pattern does not match up with that syndrome so that is not his diagnosis. We have an appointment with his doctor next week so we hope to make sure with her that there is not opportunity to get into the clinical trial. If there isn’t, then that door is closed for now.
God’s grace is most obvious when it is time to wait. Waiting obviously doesn’t come easy to most of us humans. I can rest in this observation: God is in control. Period. If I try to ramrod something that is not in His plan, I’ll frustrate myself, get stressed out, worried, etc. If it is in His plan, He will make it happen. Of course, I’m responsible to do what I ought to do but beyond that, I can let Him take care of it. Sometimes what I need to do is make several phone calls or write several emails. Other times, it’s obvious He just wants us to wait and rest in Him. I’m still learning this lesson and probably will be until I’m in heaven with Him. Some lessons just take a lifetime.
Please pray for our family to rest in the Lord and His will. Continue to pray for His grace for all of us, including Philip. I remind myself often that God loves Philip even more than I do.