Tuesday, January 21, 2014


This desire to start a blog started in me over a pair of snowpants. I know that most of you now think I am crazy, but bear with me here and hopefully you will understand. When Giraffeboy was in first grade I realized as the first snowfall approached that there was no way he could get a pair of regular snowpants over his orthotics and tennis shoes. (For the marfan parents who might read this, we can have the orthotic conversation another day and I will tell you why I am on team use orthotics.)  I started searching online for a pair of snowpants with side zippers for kids, and at first couldn't even find them, and then when I did they were over $100 and were fancy ski snowpants only made by one company. I was so frustrated.  I couldn't understand why there were not more reasonably priced options, and I truly felt like I was the first parent having to navigate this road. I know I wasn't, but I did not know anyone else who ever had and I couldn't find any suggestions of what other parents had done on the web.

Now a few things for you to understand. 1) We are on a tight budget in our house because we chose to have me stay home to take care of the kids and live on one income. 2) Giraffeboy is NOT an outside kid, so the snowpants were not going to get hours of use. 3) We had snowpants that fit him just fine except for the issue of getting them over the orthotics. 4) He could not put on his own orthotics and shoes and could not tie his own shoes (a hard thing with those long marfan fingers). 5) He had to be able to get his boots and snowpants on independently and get his shoes back on independently too.

I could have talked to the school about getting help for him for this, but I really felt like this was something we needed to figure out on our own. Since Giraffeboy didn't have an aide that worked with him at school I didn't think it was reasonable to expect them to provide someone each day just to help him get his shoes back on. I know that some would disagree with that, but I believed that it was our problem to solve. I also didn't think it was reasonable for me to go to school to help him each day either (I did that for a week or so, and it was not fun, especially for Giraffegirl). So I asked around, posted about it on Facebook (where a dear friend even offered to pay for the snowpants for us), and after searching came up with a plan. My aunt (We will call her Super Sewing Woman) had volunteered to take the seams out of his existing snowpants and install a zipper into them up to the waist. So I picked up her supplies, and after dinner that Thanksgiving my aunt and other family members went to work and made him zippered snowpants. Once we had those, we went and got Giraffeboy a pair of Neos Overshoes to wear as boots, and he was set to go.
Looking back now, it doesn't seem like that big a deal, but at the time, it almost seemed like this huge obstacle. It is like that with so many of the things our kids and families face. I wanted a way to be able to share the feelings and the experience at the peak of the problem, so that another mom could read it and know they weren't alone, and so that those who love us could get a glimpse what it is really like.

We went through the snowpants ordeal again this year, but it was so much better. Giraffegirl could use the original homemade side zippered snow pants and Neos we had for Giraffeboy. And adult side zipper snowpants are so much cheaper than the specialized kids ones, so we could afford to just buy Giraffeboy a pair without worry. And best of all, Giraffeboy recently mastered tying his shoes, so we didn't even really need to get him special boots. Mostly though, I had the experience of the first time and the answers we used so I skipped that whole overwhelmed Momma feeling. And I knew that if I needed her too, the Super Sewing Woman and family had my back and would whip us up just what we needed. And I am grateful everyday for the extended family and friends who are always willing to help bail me out of any situation. And for the other Mamas out there who blog about their experiences and help me feel less alone.

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