September is Leukodystrophy awareness month and Greg’s mission is to raise awareness for Metachromatic Leukodystrophy. So we thought it was fitting to update the blog this month.
Writing something, putting it on paper, is difficult. It forces us to deal with reality; which isn’t always positive. We took Greg to Pittsburgh in August for his follow up with the MLD experts. There has been disease progression. There are changes; his legs are weaker, his range of motion is worse, he scored 4 years lower on some of his cognitive studies. Nothing we heard was a surprise and yet it was painful to hear. Pulling us out of denial and reminding us that as much as we may not want to admit, Greg is having a hard time.
We have evidenced changes at home. He tires easily and naps frequently. Getting out of the car is a hassle. We also saw it at the beach this summer. Greg didn’t want to get in the ocean waves, or the pool or bay this year. He finally explained to us that his legs tighten up and he doesn’t have enough control that he feels he may drown. It must be so hard to want your body to do something that it no longer can.
Greg continues with physical therapy twice a week. Although he may not be as strong as he was, his therapist, MJ is working with him to preserve what he can and keep him mobile for as long as possible. We found that the water therapy has been extremely beneficial in helping his muscles to loosen. His grandmother blessed us all with a hot tub this summer. As wonderful as it is in helping Greg continue with home therapy it’s an added stress reliever for the rest of the family!
Be that as it may, I’m drawn back to the trip to Pittsburgh when Greg said, “I don’t think I want to come back here next year”. He continued by saying, “they only focus on the negative they don’t say anything about the positive”. I pointed out to him that they weren’t trying to be hurtful and that their job is to point out the disease progression. But the more I thought about it, the more I think Greg is right!! What about what he CAN do! We need to continue to celebrate what he CAN do and not dwell on what he can’t do.
By the grace of God, Greg CAN walk! He CAN eat and swallow. He CAN see and hear. He CAN communicate. He CAN laugh and engage in conversation. At some point he will be robbed of these “simple pleasures” but right now, today he is ABLE! Praise God!
We have been blessed by the support of family and friends on this MLD journey. We have “met” other MLD families online. We pray for them and their journey as well. What we do know is that each journey, each path is so individual. Greg’s future may seem bleak but with the help and support of others we will persevere. We will Never Give Up!