When we first met with the geneticist at Vanderbilt, he did admit that he thought Case had a form of MPS, but he wasn’t sure what type. They had to get blood and urine samples to send off for genetic testing. Genetic testing that can take months. I assured him that I knew exactly what Case had. He had Hunter Syndrome. I was sure enough that that is what we told those around us. God had made it clear to us from the beginning what we were facing.
That is not to say that we took it calmly. That we reacted with extraordinary acceptance and peace.
I remember raging against the disease. I remember lying flat on the floor, crying out to the Lord to take this from us. To heal my son. To forgive me for whatever I had done that had made a little child suffer. To give me the disease. To give my child a long and fulfilling life. To allow him to connect with us, to talk to us, to tell us his wants and needs.
I allowed myself to cry when I needed to, which was almost every day for a long time. I filtered everything in life through the lens of my dying child.
But we are all dying indeed.
The confirmation from the genetic testing came at an appointment in June of 2009. In fact, it was on my birthday. We went to Vanderbilt to meet with the doctor and get the results, the results that we already knew. I thought, what a way to spend my birthday?
But, in fact, it was a great way to remember my birthday. Many years before, on my birthday, I was losing a child to a miscarriage. How far had we come? God had taken my sorrow and turned it into joy, and three times even! He had given us three incredible gifts. Who was I to question how He formed one of them differently and more special?
But still there was no instant acceptance on my part. I remember being in a Bible study the summer after his diagnosis. It was still fresh, only a few months of processing had occurred. I filtered everything that was said through the fact that my son had this terrible disease. I remember one specific lesson on letting go. It was talking about the transition from parenthood to letting your child make mistakes in preparation that one day they would move out and live on their own and have to make these decisions.
I just sat in my seat and tears just flowed down my cheeks. I didn’t move so I wouldn’t call any attention to myself. I just could not stop thinking that I wouldn’t even get the chance to let go of my child. He would likely not live that long. Would not physically or cognitively be able to make a transition out of me being his parent.
It was such a cycling period – we were already grieving the child that still lived with us. We were not grieving him as if he were gone, but we were grieving the loss of dreams we had had for him, dreams you don’t even realize that you have for your children or that are so taken for granted that when something slams the brakes on those dreams, you are shocked. You think your child will tell you he loves you. You think your child will hear your voice. You think you will watch him learn things, not lose the things he has already learned. You think you’ll watch him play baseball, learn to ride a bike, have friends, ride the bus, brush his teeth, get himself dressed, tell you a story, tell you what he did at school, what he wants for breakfast, that he’s tired, and maybe someday, go to college, get married, and start the family process himself.
Okay, so maybe men don’t think that far down the road, but us moms sure do.
But it is those fundamental expectations of being a parent that are suddenly ripped from you. Actually, not so suddenly. It is like each day, each hour, you realize a new thing, a new skill, or word, that you will miss or lose because of this terrible disease. You will miss him riding a bike. You will watch him lose the ability to speak. You will miss him graduating from high school. You will watch him slowly lose the ability to walk, talk, and eat.
You think of your life in terms of “before” and “after”. Did that song come out before or after this terrible news? Was that picture taken before or after that terrible day? Can we look back now and see things we should have noticed all along?
Although you try not to, you also do pre-grieve the loss of your child. When you’re told that the average lifespan is 10-15 years old, it is difficult not to. You even consider that you’re 2 years into that time period and how much of his life do you have left? You hear of other MPS friends’ children passing and feel the inevitability that it will someday be you who is comforted.
But along with the grief, you start to touch a toe in the water of this new world. I made friends with other MPS families online. They shared their insight and vast knowledge of the condition, they lent their shoulders without expecting anything in return.
But, you still don’t realize that this is permanent. You try to keep your lives separate – this MPS life, and your otherwise REAL life, your REAL friends. Until the day comes when they crossover. I still remember the day when I was friend-ed on facebook by another MPS mom. It signaled the melding of what I had thought were two lives. It was the first sense that this was a permanent part of my life. These people were my REAL friends too and would be for my lifetime.
The first year after Case’s diagnosis was spent furiously at various doctors’ appointments, tests, and procedures, raising awareness, raising money for Case’s medical bills and expenses, and otherwise trying to process this new life. God was incredibly gracious to keep us busy enough that we couldn’t fall apart but still needing to constantly seek Him for strength and help.
At some point over a year after Case’s diagnosis, I could start to say that life was no longer before or after. Life became good again.