Is it just me, or is it odd the way your world just stops? The lab results, the diagnosis, and the hospitalizations … the realization that your perfect child is sick. The words taste bad in your mouth. Disease. Incurable. Rare. More questions than answers, more doubt than faith. You turn to the nearest window, looking for a sign or an answer, looking to make sense of it all. What you see blows you away. It crushes you. How could this be?
How is it that your world has come to a screeching halt? Nothing is the same. Nothing is as it should be.
But, a simple glance out the hospital windows proves you wrong. Everything is the same. Nothing has changed. Cars still race by on the freeway and in the distance, planes take flight. The travelers on life’s road are going about their lives as if it’s just a normal day. You’ve never felt so lonely, but the beat goes on.
In November of 2007 my world stopped. Everything changed…for my family. We became a special needs family with our days revolving around medication regimes and our nights around dialysis. We spent weeks in the hospital, prayed day and night and searched blindly for answers.
It’s been two-and-a-half years now since our picture perfect world was turned upside down and many things have changed. My son has grown, flourished and become a little boy. I have gone from frantic-with-worry mother to fierce-advocate mama, determined that I will make my son’s life as fulfilling and “normal” as possible. Our dreams were shattered, but in their place we have built new ones.
Disease. Incurable. Rare. More questions than answers and almost as much doubt as faith. The world still turns, the days go by and we still search for answers we may never receive. When I watch planes leave and cars speed by I realize something.
Last week, last month, last year…that was me. I was speeding through life looking as if I hadn’t a care in the world. But appearances are deceiving. What life is truly normal and without unanswered questions?
One thing I know for sure today is this. I am NOT alone. There are many like me. Different disease, different questions, but the same underlying fears and doubts. We lift each other up, pray for one another and empathize as no one else can.
I am grateful for the shoulders to lean on. I am blessed to have a son to hold and love. I allow myself to hope for cures, answers and miracles. So though I’m marching to the beat of a different drummer…the beat goes on.
Hey Y’all! I’m Christy and I’m stoked to join the awesome team here at 5MFSN. My three-year-old son, Aiden took his first (very expensive) helicopter ride at four months old and was eventually diagnosed with an ultra-rare kidney disorder called Atypical Hemolytic Uremic Syndrome (AHUS). AHUS affects approximately 300-600 people in the US. The disease destroyed my little man’s kidneys and made him dependent on 10-12 hours of home dialysis since he was 18 months old. He will be added to the kidney transplant list someday in the near future. He is beautiful, brilliant and full of life. He is my greatest blessing and I cannot imagine a day without him. But the days are long, difficult and emotionally and spiritually trying. Special needs parents, like those here at 5MFSN, are a large part of what keeps this mama sane and I sincerely hope that I can provide some encouragement along the way to other special needs mamas (and dads too)! You can read my personal blog Tales of the Toot or connect with me on Twitter (@aidenscross). Your comments and feedback are always appreciated!