Another face of Ataxia-Telangiectasia

Living

“I just don’t know how you can live like that!” the medical supply salesperson exclaimed on the other end of the line. Stuck somewhere between flabbergasted and slightly amused, I laughed a deep laugh that came from my soul. “Oh! You mean surrounded by love with nothing but the most cherished and amazing blessings I could ever be given? Yeah, it’s a real hardship I tell you! Somehow though I am sure I will make it through. So, when can I expect delivery?” I respond. A long time ago I let go of the idea that folks would be able to look past what they see at first glance.

If you are to write on paper what our family is like it may not be the most perfect glowing resume. However, to see it’s beauty in action is something else. We are just your normal family working through typical things like sibling disagreements, potty training, elementary and preschool, family vacations, and teaching responsibility to three small children. If you have no exposure to children with special needs it is very easy to assume a large variety of things. You will more readily notice the permanent urinary incontinence, the wheelchair, medical equipment, and emotional turmoil that comes with having a chronic medical condition. While exceedingly important, they are not the focus of our world. We are too busy working our way around those things to do the more fun things! Every family comes with its own unique circumstances. There is no textbook “perfect” family. Sometimes folks just need reminding of that. Today it was my turn to remind the clerk that urinary incontinence isn’t so horrible. Look at the benefits! He is the last one to ask for a potty break on road trips! It’s all about how you look at things my friends. So, please think twice before you size up another family. They may not be able to laugh so readily at your foible.

 

Comments on: "Living" (1)

  1. Hi. I just re-found your blog after losing my feed. So great to see it again.

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