Nothing new on the quilting front but we have had a major development in our family this week.
Our middle son Joe has had some medical problems. This is him this past summer.
When he was just a couple years old we noticed that when he was really upset his arms and back would sort of jerk. After a quick trip to the family doctor during one episode we found ourselves on the way to Johns Hopkins for a four day stay in the EMU - epilepsy monitoring unit. During that time Joe had a number of measurable seizures and we found out that he also has a condition known as hyperinsulinism. His body over produces insulin and this is a very dangerous situation. Hyperinsulinism is relatively new as far as diseases go. It got it's name in 1995. There are only about 600 doctors worldwide who know how to treat it and many of the treatments are experimental. There is only one oral drug and one injectable drug to treat it. He is on the oral and when he was first diagnosed it was almost impossible to get. At one point the manufacturer was so far behind they would only sell it to hospitals. So our local pharmacy had to buy it from the hospital and then resell it to us.
He also had generalized seizure disorder. If you notice I said had. He has been off the medicine and seizure free for a year now.
Back to the hyperinsulinism. We have seen three doctors for this. The doctor who diagnosed it at Johns Hopkins - told us as head of endocrinology for Johns Hopkins he only knew as much about the disease as a junior staff member at a Children's Hospital would know. So off to Philadelphia we went. This doctor wanted to do surgery with no guarantees so we asked about a second opinion and ended up in Pittsburgh.
The doctor in Pittsburgh is the top man in the field anywhere in the world and we were thrilled that he was able to see Joe. Granted we had to wait a while and getting follow up appointments are harder to get than an audience with the Pope but we have been going there for about 6 or 7 years.
He said no surgery the first time we went up. And a couple of years ago he said that Joe would probably outgrow the condition in the next few years. So we were up there yesterday and the doctor said it's time to start weaning Joe off the medicine. It's going to take until next summer but he's coming off it and we are thrilled.
And we owe it all to God. We have danced this dance for seven years and He has been there every step of the way. I'm one of those people that has a hard time hearing God. I always wondered if I heard God or if I heard something in my head that I wanted to hear. But I have had some encounters with God through this. I learned a few things and I'd like to share them.
A few months before Joe was diagnosed I heard a pastor who had had brain surgery speak and he said that when he was first diagnosed with his tumor one of his parishioners told him not to ask God why but to ask God what. What do You want me to learn from this?
So I did that and came up with three things. Patience, submission and materialism.
You know I had all these things. I collected porcelain dolls and Longaberger baskets and who knows what all else. It was all about accumulating things. But when you're told your baby has a life threatening condition what good are they? None of those things would save Joe.
And I have struggled with submission since the first time I heard about it. Let my husband boss me around? Not me - no way. But then I found out what submission really is. I read a wonderful book - I believe it was called Liberated Through Submission. And during a Sunday School class the teacher (a woman) explained it in a way that made me see the beauty of it.
Oh and finally patience. I have NO patience for anything. But early in this dance God told me that He would heal Joe. As much trouble as I have discerning if it's God or me I know without a doubt that this was God. I realized that Joe is not mine. He is God's and God has given him to us to love and take care of but we don't know for how long that will be. So I realized that the only thing I could do was give Joe back to God. I'm a very visual person and I knew I had to visualize this. I had to see that I had given Joe back to God. So I imagined carrying Joe in my arms up a set of stairs. And at the top there was a throne. I walked over, kissed Joe and placed him on that throne. Then I did the hardest thing in the world - I turned around and walked back down those stairs without looking back. I cried but I had peace.
We prayed every step of the way and we always seemed to be getting a one word answer from God. Wait. When they wanted to do tests - Wait. When they wanted to do surgery - Wait.
And it would seem the waiting is coming to an end. I've learned the things I thought God wanted me to learn - sometimes more than once. lol. And He has taken care of my boy. Of course there is still the possibility that in the weaning process we will find that Joe still needs the medicine but right now he is on a minimal dosage anyhow so it's unlikely. Besides, God said He would heal Joe and God keeps His promises.