The other evening, I spent a few hours with a friend of mine, scrap booking. I was excited and felt so accomplished for completing another album. I should also say at this point, that the other reasons I love to scrapbook, is I find it relaxing, it is ME time and it is therapeutic. It allows my mind to slow down to a reasonable pace of thinking, and forces my mind to be present in the memory that I am scrap booking at that moment. This is what brings me to this post. This is a few of the pictures I was working with at the time......
I was on a school field trip with my daughter Haley. At one point, all of the kids were getting the chance to throw a hunting spear, to learn how people hunted for their food. I didn't think Haley would have a problem with this, but soon I was reading her body language and knew that she was uncomfortable. She told me she did not want to try, and I encouraged her to try. All of the kids were taking turns, and it was not a contest to see who could throw it the farthest. All the boys where yipping and hollering, imagining the kill of a buffalo, and this was making her nervous.
Someone tried to be helpful, by saying to her, "don't worry Haley, it's as easy as riding a bike." One look in my direction and tears welled in her eyes. I fought my emotions between being a firm, strong mom and telling her in a forceful voice to just try it and the soft, empathetic mom who wanted to hug her and say, don't bother, it's no big deal, we don't have to hunt for our food. Hell we don't even eat red meat! In the end I tried both approaches, and failed at both.
You see, Haley cannot ride a bike. She is ten years old and she cannot ride a bike. Now I was not about to explain that to someone who was only trying to help, but they had no idea the awful emotions that caused for her.
Haley has hypotonia, decreased core muscle strength, and balance difficulties associated with her 8q24 chromosomal duplication. Wow, is that a mouthful or what! Try and explain that to someone in simple terms, and it is impossible. I know, because I have tried!
When it was time for Haley to learn to ride a bike, we tried. We got frustrated, she got frustrated, but we tried. Eventually, Haley was able to get special wheels put on her bike, all taken care of through The Children's Rehabilitation Foundation. But because of her core strength and her balance, it was still a challenge. It got to the point that because her friends were asking questions she didn't know how to answer, and people were staring, that I would take her to a large park near by to let her practice. We even tried taking the bike camping, because at camp, all kids ride their bikes.
She tried. Sometimes she gave up too easily out of frustration. Other times after I would tell her over and over again that she could do it, she would have a burst of desire to ride that bike. Dave and I eventually saw, and heard from a physiotherapist, that she may never ride a bike.
At some point, with the advise of an occupational therapist from Children's Hospital (who I am sure was sent to be in our lives from someone up above), I asked myself if it would be a big deal if Haley never rode a bike. With all of the challenges she would face, should riding a bike be a big deal?
Will it change her as a person? Will she still look at me when we are driving and reach out to touch my arm and say "I love you mom!". Will she be the same Haley that tells me she is so proud of me, when I make a new craft? Will she still be the crazy, loveable girl who wears this to bed?...
And sticks her tongue out at any chance she gets?
Will it change the fact that she is compassionate at age 10, loves with her whole heart, adores any baby she sees, touches your face to make you feel good, and laughs with her whole belly.
Not a chance! We forgot about the bike, and we have never looked back!
It would be nice to go bike riding as a family, and I would be lying if I said it didn't pull at my heart strings when I see kids riding through the campground in the summertime. It makes me a little sad that Haley can't ride her bike to her friends house, or to school. But it does not make Haley sad and that is the most important thing. This strong, brave girl, with all of the hard stuff she has had to face, all of the challenges that are ahead, has a confidence that astounds me! Every day, in some way, she amazes me!
This may be something as easy as riding a bike, but from it, I have learned so much more. I have learned that it is not my right to ever have been embarrassed because Haley could not ride a bike. It is not about what our children can't do, but what they can do. That of course is an easy one, but it is about helping them to see their potential and all that they have to offer. It is about teaching them values and how to love and how to embrace diversity. It is about learning that although I am the parent and I am responsible for living a life in which I lead by example, I was never quite prepared for all the things that she would teach me, for all the ways she is still teaching me.