You make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent son, Nathan. He deserves a full life experience, but no, PMD, you robbed him of that. I really do hate you, and all of the pain you have caused me, my son and the rest of my family. The struggle has been real.
You are a strong one, Pelizaeus-Merzbacher. You have prevented my son being independent. But for all of the expectations you destroyed and all the joy you ripped from our hearts, we are still happy. Nathan is still happy. I will not let you take that from us. I will not let you win. As strong as you think you are, my family is stronger.
The love we have for our special son surpasses any boundaries you have set on him.
Nathan cannot support himself while sitting up, but we have a special chair for him. Nathan cannot eat full meals orally because he gets exhausted and starts to choke, but we have a feeding tube for him. Nathan can’t quite figure out the use of his hands, but we have occupational therapy to help him.
We have a solution to your every problem. So bring it on.
I do have one thing to thank you for, though; you have taught me many things about myself. You taught me patience I never knew I had, selflessness I never knew I had, and strength that creates hope.
My son Nathan may never know how to tie his own shoes or learn his ABCs, but he will continue to feel. He will feel the chilly water of Lake Michigan when I dip him in. He will feel the fresh cut grass around him when I lay him down outside for a family picnic. He will feel the wind blow in his hair when we take him for bike rides. Most importantly, Pelizaeus-Merzbacher Disease, he will always feel loved. You will never rob him of that.
Two very lucky people