“There have been angels in my life….” This was written to me on a thank you note by the wife of a friend who passed away suddenly. For some reason, that quote always stuck with me. It meant even more to me when Will was little and his babysitter took me aside one day to tell me “something wasn’t right”. That was angel number 2. She was 73 at the time and had kept practically every child in our hometown. Everyone knew her and everyone trusted her. I was no exception. We trotted straight to the doctor, then to another doctor, then to another. Cerebral Palsy was the diagnosis. “Put him in physical therapy, occupational therapy and speech therapy,” the doctor said. Have a nice life Parker family. He didn’t say it, but I felt it. He was NOT angel number 3, and Will did NOT have CP. We switched doctors and over the next few years both she and I decided he had Will Parker Syndrome. Why not name it after him? She had no idea what was wrong. She became angel number 3.
Will Parker Syndrome was adequate for a while. We just dealt with the lack of speech, the way behind motor skills, the tantrums and the reflux – which almost changed his diagnosis to Will Parker Demonic Syndrome. How could that much come out of one little body?! Then a friend of mine suggested we investigate the possibility that he had some type of mitochondrial disorder. Was this out of the blue? No. Her child died from MCAD (Medium chain acyl CoA dehydrogenase deficiency) and her fight to have this condition become part of the newborn screening required in Mississippi became Ben’s Law. Angel number 4.
That conversation took us on a journey that brought us to Mayo Clinic and Dr. Jerry Vockley. His team tested, and scanned, and interviewed, and tested again, and measured and well, you get the picture. Things were starting to fall into place. By the end of the visit and subsequent visits after that, we determined that Will probably had a mitochondrial disorder, but they could not definitively tell us which one. So our diagnosis became Will Parker Probably Metabolic Disorder Syndrome, this was much longer and more impressive to the medical community. Mayo Clinic became angel number 5.
Will turned 12 and then came the seizures. Oh yaaay! This was a new manifestation of this illusive condition. There is nothing like a grand mal seizure at home to enlighten you on how you and your husband respond to an emergency. I think we forgot the number to 9-1-1 and as I recall, all my shouting from Will’s room prompted a sprint down the hall by my husband – a hall recently dust-mopped with pledge. He can’t skate so you can imagine how that turned out.
Angel number 3 (the doctor) suggested we visit with a new geneticist at the University of MS Medical Center, which is close to our home. “He is young, aggressive and excited,” she told us. “I think a new pair of eyes is what we need.” I guess by that time I was ready to ditch the Will Parker Probably Metabolic Disorder Syndrome. It was making me tired saying it, and I thought there is no way I can be more tired than right now.
Will was on enough medicine to open a pharmacy in my kitchen and his behavior was enough to put me in a nut house. It was like Mayo Clinic, the sequel, but we answered the geneticist’s questions and he simply said, “I think I know what is wrong with him.” Huh? Are you kidding me? He must have been in my medicine cabinet. I thought he was young and aggressive alright…and as nutty as me! He ordered some tests and after a week or so we had our answer – Creatine Transporter Deficiency Syndrome. He explained that he felt there were many more kids like Will whose parents are roaming around in the developmentally delayed, mental retardation, seizure disorder world. He wasn’t nuts after all. He was angel number 6.
So our journey continues with Will. He just turned 18. We decided a few years back that I was never going to open that pharmacy in my kitchen, so we took him off everything except seizure meds and a small dose of Clonidine. The seizures have stopped, he’s talking more and when I look at him, he’s in there.
Today, I’m finding more people just like us, more angels to add to the list. I know they have been placed in my life for a reason. I’ve connected with another CTD parent to talk to, that seems to have gone through the exact same timeline of life that I’ve had with Will. We are able to laugh together in our “CTD journey” and it helps me appreciate the many blessings that I have. You see now that I can really count, Will is my angel number 1. He wakes up happy. He loves his family. He especially loves his Daddy (who still cannot skate but is also on my list of angels). He does not meet a stranger, and I cannot tell you the times I’ve met people because they have met Will out and about. Tony and I used to think about what it would be like if “Will were normal”. What we’re finding is that Will is perfectly normal. He has taught us so much about what it truly means to love a child, what it means to be married and how to open your heart no matter what the consequence.
I have often wondered what in the world God was doing thinking we could handle this. Did He not know how hard this was? Then someone said to me, “God must have thought a lot of you and Tony to give you Will.” So I guess He did.