When you can’t look away
Today I find myself wishing for the ability to not see what I see, to not feel what I feel and I pray for the strength to continue to find a way through this pain. The pain that creeps up on you, that you don’t have the ability to escape from …it’s all around you… it IS you.
As of recent we notice some more changes with Eli’s legs. His left leg is looking more like a greater than sign every day. The left knee is coming in so much that it is pretty permanent and only going to get worse. How he holds himself up is beyond me and pretty much nothing less that a miracle. His thin yet miraculous legs that are somehow still able to hold up his body, getting him steps here and steps there… allowing him to jump on his brothers and hobble around the house. We are so grateful for these legs that have carried his body much longer that we ever imagined.
The negative to Eli continuing to use his legs is just that. Every time that his legs have to hold his body, it adds more and more pressure, which in time makes the bending worse, the challenges greater and the pain of watching him struggle even harder.
The thought of watching Eli struggle so much with his ever changing body is daunting enough but then add precious Ella to the mix and there are barely words …just emotions.
Shuffle shuffle…slide slide…followed by a trip here and a trip there. This is what we hear and see when we head to Target or head out for a walk. Her feet are loud and she shuffles with every step. It’s a very subtle yet difficult reminder of living a life with MLD. I don’t want to feel any more. I don’t need any other reminders of how this disease will continue to take from us until it can’t take any more. I don’t want to see any more!
When you walk into a store and you see a young person in a wheelchair you can turn your head, when you see a young girl with feet turned in shuffling as she walks past you, you may wonder why she walks like that and look the other way. You may think for a moment how lucky you are that you are not the woman pushing the child in the wheelchair with the daughter shuffling behind. I get it … this used to be me. If it wasn’t in my world I could turn away.
The gift is … most get to look away. I hate that I can’t look away, that I wonder every day what’s next. Will his leg just break because they can’t hold his body anymore. Then what? What is next with Ella’s feet? Why did this have to happen to her too. Why couldn’t I save her from this? God, I just want to look away but I can’t! It’s happening right in front of my eyes and every day is a reminder of the power of this wicked disease.
I am speaking next week at Accenture and as I was working on the speech I was looking for pictures for the slide show. Eli heard me say that I was looking for the sac race pic from Kindergarten as this is when I knew something was wrong. He looked at me and asked me why I was looking for that picture. I looked over at him and before I could say anything he said “ is that when MLD messed my life up?” I asked him what he meant and he just said “everything was different after that”
I remember how hard it was to look away that field day; I couldn’t …when I knew something was wrong all I could do was watch, wonder and pray. As painful as it was, the watching led me to push for answers, which we ultimately got. Not being able to turn away and ignore what I knew to be true is what I have to believe saved them from being snatched up already from MLD. Going forward my hope is to channel this pain of watching their struggles and pain, to use it to continue to find ways to help them in the future.
As humans we go through so much pain trying to avoid pain but it is a part of life, so I will choose to use the pain as fuel and keep going, no matter how hard.
Fear Not 