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.
My son will be 3 yo in october and was diagnosed with spastic diplegia/CP about 2 months ago. Peds neuro ordered MRI to look for signs of CP and there turned out to be white matter injury worrisome for metachromatic leukodystrophy. He has always met his milestones aside from gross motor, primarily with balance and unsteady gait when walking. He does not jump or run but he seems to climb well. Fortunately at this point, he has not shown any regression of skills. Genetic tests are pending. If the tests are negative, has anyone ever encountered being told their child has leukodystrophy and it actually turned out to be CP? Thank you for you responses and support and God bless