by Melissa Koker-Kent
To hate or not to hate?
A conversation with some friends whose children share my son’s diagnosis of Mucopolysaccharidosis (MPS) got me thinking recently. When your child is diagnosed with a devastating and terminal genetic condition, if you hate the disease, does this somehow mean you hate your child or in any way direct negative feelings toward your child?
I have never given this much thought. Many times I’ve openly stated that I hate MPS but I’ve also thanked God for what this disease has done in the lives of so many. With MPS my baby has suffered so much, hit so many obstacles, and lost so much. My family has beyond sacrificed in an attempt to maintain as much of my son’s health and skill as possible. We have spent endless hours crying and praying for one more day. We have struggled financially, emotionally, and spiritually beyond expression. Every day is hard, everyday feels impossible, and nothing about watching the devastation this disease causes my son, my family, my friends and me would I ever consider an amazing experience.
Sounds pretty grim, I know. How could anyone not hate MPS? But there’s more to this story of ours, to the journey MPS has taken us on. Have you ever experienced the divine intervention of God and known without a doubt it was an intentional love for you? I have, every time my son smiles at me. Have you ever known truly unconditional love from another person? I do. Have you ever known unexplainable blessing thru disaster? I have, nearly every day of Henry’s life.
Henry is the most inspirational and heroic person I’ve ever been blessed to know. He changed me. He made it possible for me to really know how precious every moment really is. He has given his sisters an insight and wisdom they never would have had without MPS in their lives. His MPS story has touched, encouraged, changed, and impacted the lives of more people than I can count. I’m a better person, wife, mother, friend, and caregiver. I’m more faithful and more determined to live than I ever would have been without MPS in our world. His life is beautiful, it’s meaningful, it has great purpose, and being his mom has been the biggest blessing in my life.
Now, how can you hate anything that’s brought so much goodness into your life? So I guess I understand both sides of this. How do you decide if you should hate or love something that’s so devastating and so beautiful at the same time? My conclusion is this: I absolutely detest the suffering my son must go through in this body for the sake of others, I detest what this disease has taken from my son, I detest knowing one day I will lay my baby to rest. But in the same breath I am grateful for the amazing little hero he is. I’m grateful for the impact he’s had on others. I’m thankful for the joy I still see in his eyes even now. I’m thankful that I was picked to be mom to an angel on earth and I’m thankful God picked him for such an important role in this world.
Maybe it’s my faith, my confident belief that the suffering here is temporary and only a short stop on our way home, maybe it’s my way of surviving this impossibly hard situation, or maybe I need to be medicated. Who knows? But I would have to say I have a love/hate relationship with MPS. I will continue to fight for a cure so long as I’m breathing. I will continue to pray that my son’s pain and suffering is minimal. I will continue to believe there is divine purpose in Henry’s suffering and that when he goes home, God will hug him tight and say, “well done my son, well done.”