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Saturday, March 31, 2007


I always thought I would be a cool mom. I thought my daughter would outwardly cringe at how embarrassing her mom was with “the Tauntes” or “Auntie C” (etc..), but inwardly she would love how hip I was.

I also thought that I would absolutely win the “best mom ever” award because of how encouraging I would be, and how I would allow my child(ren) to choose their own life path. I envisioned holding her hand for a little while, until she was old enough to make the tough life decisions on her own. And then, when the time came, I would rejoice with whatever she decided to “be”, and how she chose to get there.

Add this to the growing list of pipe dreams!

Ellie is only two years old, and Richard and I are already faced with some incredibly important decisions regarding the outcome of her life. This is profoundly more than hand-holding. This is all encompassing bear-hugging.

How much time and money do we put into Ellie’s therapy? Do we sign Ellie up for intensive summer camp ($1000), or consider hyperbaric oxygen treatments ($10,000), or stem cell transplants ($20,000)?

How many procedures should we allow the doctors to perform on Ellie? Do we allow the orthopaedic surgeon to inject Botox into her tight hamstrings? Do we allow him to surgically lengthen her tendons?

How hard do we push Ellie to accomplish physical tasks on her own? Do we force her to “walk”, or allow her to “rest” in a wheelchair? Do we require a certain amount of therapy each day, or should we ease off sometimes?

I realize that many of these questions aren’t yet directly posed, and we have time to figure out our answers, but they are just around the corner. So much for allowing my child to freely choose the direction she wants her life to go. Her mom may be part of the reason why she walks or uses a wheelchair. Gulp.

I am terrified of making the wrong decision. I read in a CP magazine about a boy whose parents decided that he should have tendon lengthening surgery, and during the operation, the anethestist administered the incorrect dosage, which left the boy with significant cognitive delays (which he didn’t have before the surgery). Could Richard and I live with this sort of outcome?

Furthermore, I am fearful of Ellie blaming me for making a wrong decision along the way. What if she wanted me to push harder for her to walk? What if she felt as though my forcefulness in therapy was too much? What if I scar her for life, both physically and mentally?

I realize that these fears are universal to motherhood. Every mom worries about the way she parents. My fears are simply elevated given our situation. I suppose that every mom, at some point along the journey, realizes that parenting is MUCH more difficult than she ever realized.

I suppose this is where faith and prayer comes into play. My fear brings me to my knees. I beg God to guide me (and Richard) in the decisions we make for our baby girl. I plead with Him to give Ellie a soft and forgiving heart, so that when I make a mistake, she won’t hold a grudge.

And, I hold onto hope.