Taking Risks

As I navigate the waters of parenting a child with "exceptional" needs I find myself faced with all sorts of decisions I had never anticipated. Perhaps that's not entirely true--most of the crossings are the same, but my concerns are a bit different...more exaggerated. I paddle along in my parental canoe and down one fork in the river lies a safer calmer path. Down the other lies rough and exciting waters. Other paddlers in other canoes come to this break in the river constantly, but my boat is...different. It is not "meant" for the rough waters in the same way the others are. It is more sensitive to the bumps and turns that the more thrilling path entails. Ok, so I know this analogy is cliche but it works ;)

I often envision this theoretical journey as I make choices in Ruby's care. I am now fairly in-tune with the special needs community and I find it easy to place parents of such children in two categories. Now I'm not saying that there are only two types of ways to parent a child with special needs. Every parent is unique, and most obviously, every child and their set of concerns is unique...hence the term "special" or "exceptional" or whatever label gets placed on children who don't fit perfectly in the box with the big 'ol NORMAL sticker on it. What I mean to say, is that I see many parents who approach their child's differences and medical concerns with extreme caution--with what amounts to an astounding degree of diligence, care, and protection. And I see many other parents who seem to risk a bit more in order to allow their child more freedom...the same freedom that "normal" children are awarded with less deliberation. (My there are a lot of quotes in this post!)

Does that make any sense? Calm safe waters=exceptional diligence and protection. Exciting rapids=risk for the sake of freedom. Before I go any further I don't want to come off as denigrating either style...but I do want to work through my own thoughts on why I often choose to paddle down those rough waters with Ruby by my side.

About a week after Ruby was born it became clear how different her life was going to be from the average child. And I remember vowing to my mother that I would do everything in my power to give her the most normal life possible. Upon reflection I think I should have said the most fulfilling life possible. I certainly hope Ruby does not have a normal life, I hope her life is exceptional! I hope it is full of joy and excitement. I hope that she can look back on her childhood as if everyday was an adventure...just as I do because that's what my mother gave me. And to accomplish this I feel as though I sometimes put her at risk.

Ruby gets sick more than many children, and when she gets sick it certainly hits her harder than most kids. Part of this is due to her chromosomal deletion and her T-Cell count being on the "lower end of the normal range" as immunology put it. It also has to do with the fact that her pulmonary arteries, and therefore lung profusion, will never be as large or function as well as a person with a normal anatomy. But I refuse to deny her the same childhood experiences that so many other children have. I take her to museums, the zoo, and playgrounds. She interacts with other children constantly, and some of them are fighting colds when we see them. Hell, I even let her play in one of those disgusting ball pits at a Dairy Queen! We still take more precautions than some parents. Hand sanitizer and wipes are always close at hand. And I never knowingly expose her to people with serious illnesses. But I am aware that we do things that some parents with a child of similar challenges as Ruby would deem far to risky.

So why do it? Because life is worth living. Her life is worth LIVING! Ruby's life needs to contain a certain amount of danger if it is going to be worth anything. She has ALREADY paid in more blood and pain than most adults can comprehend for her chance at life. And so she deserves the right to risk a bit more in order to receive all that her life has to offer. As her mother I am going to see that she can take those risks. And I will be there to minimize them. And I will be there to nurse her when she is sick. And I will be there to console her when things turn out badly. But I will also be the one to see that nothing-less-than-brilliant shine in her eye when she experiences a moment of pure joy, learning, excitement, or accomplishment. Because that my friends is a worthy life. That is a life I can be proud to give her...a life she can be proud she risked.