I just finished reading The Oak Leaves by Maureen Lang. It’s a beautiful story about a family affected by Fragile X told across two different generations of the family separated by almost 150 years. It made me cry, it made me remember all too clearly those initial days after Elijah’s diagnosis and it also made me think of the hundreds of ways Fragile X has changed our lives. Sometimes it seems like absolutely everything is different and everything is touched by this change….and yet, amazingly and confusingly, nothing really changed at all.
We still love our child fiercely and rejoice in all of his accomplishments, all of the progress. We know how much work it takes for him to master tasks, and yet he rarely makes it seem like work, always ready with a smile and laugh. And what a smile it is. I’ve never seen a child with the capability to make strangers smile and laugh the way Elijah does. It’s literally contagious.
We still love each other and continue to grow together. We still have hopes and dreams for ourselves and Elijah. We still have the support and love of our families. We still collect silly Star Wars Legos and randomly quote Friends episodes. Seth still makes the most amazing macaroni and cheese on the planet.
We had Elijah’s first IEP meeting today. We made the transition from the cuddly and easy world of IFSP’s for those under the age of 3 to the scary, meeting room full of people who may be more concerned with budget than what your child actually needs world of the public school system. Days like this are days when it really does seem like Fragile X runs our lives. So I’m glad that it was a day like this when I finished that book. Because reading about the journey of that fictional character, knowing that the pain, grief, guilt and shock of it was based on that of the author herself, and knowing that she eventually got to the point where she could write and promote a book, that she could acknowledge the blessings within the curse, reminded me to think of all of the ways that everything can be affected and yet nothing at all changes.
These are the ways that I think God takes care of us. I don’t think he goes around removing the trials and tribulations from our lives, because really, if we all lived blissful uncomplicated lives we wouldn’t be much more than guppies in a fish tank. Those trials and tribulations ARE life. God gives us the tools to deal with them, but he doesn’t do the work for you. Just because you have a hammer, some nails and a bit of wood doesn’t mean you automatically have a house. You have to use the tools; put in the time, energy and work and build the house yourself. So there you have it. My philosophy in a nutshell…..a very mixed metaphor, rambling nutshell. So really it’s probably not a shell at all. It’s a philosophy in a mixed nuts bowl.