The last 6 or so months I have added almost 150 new friends on my facebook account. This particular group of people are all parents, grandparents, and otherwise care givers to lissencephaly and microcephaly children. Most of you know that my son, William, has lissencephaly which is a rare and fatal brain disorder. I am a member of a yahoo lissencephaly group but since most of the people have now also moved to facebook there is a new level of relating. Now we can see photos of each other and have a more personal relationship via the status posts and chat. This new level of relating has good and bad points. The good points are obvious but the bad points are not. Let me explain.
Becoming more involved in other lissencephaly kids lives is nerve-wracking. Just when I get Will home from the hospital and fairly stable, another kid has his turn, then another, then another and so on. Knowing what my Will goes through when he has a hospitalization, my heart aches for the other kids when it is their turn. All of the sudden, my worry and my grief has exponentiated. All of the sudden it’s like I have 150 lissencephaly children who are my own. And my prayer list has become a full-time job! And because you grieve and laugh and share with these parents, your heart becomes heavy for them as well. There is a new lissencephaly mom that I recently met through her mother. This new mom has a few extra challenges which I will not go into. This new mom, I will call her Anne, is reaching out and trying to find some sense in all this. Her mom asked if I would share my story in hopes that it could encourage Anne and bring her some hope. The thought that I could share my story and have it matter to someone else and possibly help them is beyond rewarding.
So with that long and wordy introduction here is our story:
William was born in March of 2004 and it was a fairly normal pregnancy and birth. He was not breathing very well when he was delivered so the nurse bagged him with some oxygen. Other than that, up until he was 4 months of age, his life was fairly normal. July of 2004 things changed. My brother and I had just returned from a road trip to Florida for my grandfather’s funeral. We took Will with us because he was still so little I would not have been able to leave him home. We stayed at a hotel in Atlanta on the way home and that evening I noticed Will’s eyes were twitching funny. I told my brother that I would have to have that checked out when we returned home and thought nothing else of it. Enter July 9, 2004. I was working in Ann Arbor and Todd stayed home with the boys during the day. At this time he was working midnights for the State of Michigan. It was crazy but we made it work. Almost 30 minutes after I arrived at work, Todd called me. He told me that Will had a seizure and was being transported to Foote Hospital via ambulance. Driving like a crazy person, I made it to Jackson in about 15 minutes. When I pulled up, a nice elderly gentleman met me at the front doors. He asked if my name was Dawn Pickett. I knew at that point that Will was not alive. I mean, why else would I be met at the emergency room as I pulled up? The walk back to the room was the longest walk of my life. I am not normally a pessimist but I was certain my son was not going to be alive when I saw him. When I got to the room and saw Todd there with a peacefully sleeping, and very much alive William, the relief I felt was overwhelming. I figured that whatever else was wrong now, it would be better than the alternative.
The doctors at Foote were not able to diagnose or treat Will so we were sent to the University of Michigan hospital. When we arrived, they were waiting for us and immediately took William back for tests; cat scans, MRI’s, x-rays, etc. Todd and I waited in the patient room where friends started gathering. My best friend Maureen, who is a police officer there, met us, my brother and sister-in-law came in from Monroe, and a small group of others. We all just sat there, waiting, and waiting, and waiting. Finally, the doctor came in and explained that Will had a brain disorder called lissencephaly. Of course, I had never heard that word before. I remember asking the doctor for a prescription, sure that the right medicines would fix it. The doctor basically just told us that this was a fatal disorder and that Will would probably be dead within two years. Word cannot describe my feelings at that moment. We had a two week hospital stay while the doctors worked on figuring out a plan of care including anti-seizure meds. During the first few days I was mad, sad, nervous, and basically unsure of everything. Maureen found the yahoo lissencephaly group online and that was my first positive lifeline in those first few days. This yahoo group was made up of parents who had already been through what I was just starting to go through. You could have given me a million dollars in exchange for my group membership and I would not have taken it.
It is difficult to accurately portray the process of dealing with this diagnosis and getting to the point where I am now. I remember telling myself while Will was in the hospital that I am still his mother and he needs me. I knew the best thing I could do for him is to arm myself with information and start to find out what services were available for him. I knew he would need therapy and promised him that I would make sure he had the best therapy available. Somewhere along the line, I thought to myself, “Hey, look at us! We’re doing this! We’re taking care of him and he is happy! Wow, who knew?”
In my darkest days I cry myself to sleep. I get seriously mad when I spill stomach contents from his g-tube. Insurance companies? I can’t even go there on such a fine beautiful Sunday morning. But to see him wave when they told me he wouldn’t be able to do anything “on command” and to see him smile and roll over and touch my face when I lay down next to him is worth all the negative aspects of this disorder. Our life is normal. It’s a “new” normal. We still have good days and bad days. We still have hospitalizations and seizures and ambulance rides and scary days. We almost lost Will in December of last year after a 90 minute seizure. He was on life support for 5 days and in the hospital for 12. But God gave him back to us.
I am not a great writer but I am working on it. But I hope that my words can help someone. I hope that you read this and know that whatever you are dealing with, just press on. Hold your head up high, stick your chest out, and do it.
Peace.
