Regardless of how great a support system you may have; doctors, therapists, friends, and family...having a child with a rare disease; a disease that doesn't have enough "numbers" to really get statistical data from, a disease that rarely is found in text books other than a paragraph or two about all the "stuff" that comes with it...having a child with such a syndrome means always waiting for the other shoe to drop. The greatest of all fears is the fear of the unknown. Let's face it; WAGR Syndrome is an unknown.
I spent the first 6-10 months of Evie's life worrying about the unknown. Would she exhibit head banging, behaviors typical of autism? Would she have cancer, kidney failure, and developmental delays. How bad would her glaucoma get? How often would I have to miss work because she had pneumonia? Would she have friends? Would she be kicked out of places because of bad behavior? If there was ANYTHING to wonder and worry about, I could find it.
I wasn't just waiting for the other shoe to drop, I was waiting for a torrential downpour of shoes.A few things helped me. First, my faith; then the philosophy of a good recovery program; and third is time and experience.
First of all, I have a strong Christian faith. I believe that we are all sinners in need of a Savior and here on earth for a short time compared to our eternal life in Heaven. I believe that I'm here to be broken down and built back up again. I believe that God can bring beauty out of pain. I believe that, as Jesus promised, in our weakness, God is strong, and that the poor in spirit shall inherit the kingdom of Heaven. Not EVERYONE believes this; but it's MY foundation, and it's the primary reason I can smile every day and know for certain that "this too shall pass."
The second way I learned to deal with the fear of the unknown is through the 12-step philosophy of "one day at a time." I can't CHANGE or CONTROL what will happen to Evie. I can educate myself on probability, and I can figure out how I will react, but I can't actually control what could happen. It's like a tornado warning. The possibility of a tornado is high if certain conditions are in place; so they issue a warning. The warning doesn't mean the tornado will hit your home; but it means you are at a great risk for it. WAGR doesn't mean your child WILL have cancer; WILL have glaucoma; WILL have kidney failure or developmental delays. But knowing that your child has WAGR tells you that your child is at a greater risk for these things and you need to be alert and aware.
The third way that I have learned to deal with the fear of the unknown is through experience. Having raised a child with WAGR for nearly 10 years now, I have enough "experience" to know how to respond in certain situations. Hmmm...Evie's leg looked funky when we took her band-aid off from her cardiac
catheterization. Well, I know she has a tendency to react to certain adhesives in band-aids...so, it could be cellulitis, but it could also be a skin reaction. Rather than running to urgent care (which would have been my response three years ago), I decided to wait a day and see. The next day it looked better! The day after that, even better! So, my experiences have given me the knowledge I need to keep calm and stay "ahead" of the fear.
Another way that "experience" has helped me is in seeing all of the ways that we have been blessed; and I use those blessings to fight my fear. It's true; scary thoughts and happy thoughts cannot share my brain at the same time. If I fill my mind with the happy thoughts; the blessings we have experienced, then I don't have room for the fear. When I start to panic about an ultra sound I start to think about the variety of blessings we had showered over us when Evie had cancer; people bringing food, sending cards, giving us gas cards, offering vacation time to me so I could take off from work at times. When I look at all those circumstances, I realize, I have nothing to fear.
Possible? What's possible? The sky's the limit. Literally. When we are para-sailing with Evie, it's hard to believe that I once thought we'd never be able to go outside again. And there we are, para-sailing.
I love shoes; I mean I am a shoe fanatic. But living life just waiting for the next one to drop didn't suit me at all. Now, I live one day at a time, and I keep my shoes on my feet.