I'm very open and honest about how busy we are and how much of a mess I am, but the truth is, it's so much more complicated than that. I'm usually very positive and, truthfully, it's exhausting. Some days I fake a smile just to get through. No one understands the pain of raising a child with a terminal illness unless you are there too or have lost a child yourself. It's full of ups and downs. The ups are so high but the downs are so low. There's no real happy medium. The "happy" medium is a numbness that I can't escape. It's every day. The best picture I can paint is that I feel as if I can't swim and I dive in the water to save someone drowning only to find myself drowning. I can't yell out for help even though there are many people standing around the pool who could help me. Nothing can possibly take away the pain I feel when I look into my daughter's eyes knowing that if nothing is done, I may never get to watch her walk down the aisle. I may never get to see her go on her first date or play sports that all the other kids her age are doing. We've built our lives around the uncertainty that is tomorrow and we live very much day by day. There are no plans made beyond a week's time because, the truth is, we don't know where we're going. We grasp onto the hope that a cure is coming, but that's all it is - hope. Faith keeps me pushing forward even though I feel as if I'm drowning. Trying to keep everything organized is becoming more and more of a task with every additional specialist we add to the never ending list of doctors, therapists, and specialists we see. We are running constantly to therapies and doctor's appointments instead of games and fun get-togethers with friends. I am envious of those who have kids running and playing sports. I'd much rather be taking Jordyn to games than therapy. I'd much rather see her running alongside her peers instead of struggling to keep up. I pray that one day Jordyn finds someone who will walk alongside her and wait for her. I pray that she'll find someone to lean on who will understand all she's gone through to be this far. I pray that some day there will be a cure and that we can begin to plan and look ahead to the future.
3 days ago
Adult Refsum Disease is an ultra-rare Leukodystrophy. Global DARE Foundation was recently founded to support individuals with Adult Refsum Disease. Our mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. You can find out more about Adult Refsum Disease at our website: https://www.defeatadultrefsumeverywhere.org/ We are hosting our first conference in London on May 15, 2020. We can use help finding more patients. Please share with anyone that may benefit. We will also be at the United Leukodystrophy Foundation conference in June.