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Signposts Along the Way

by julie on April 30th, 2014

We have completed another big step on this adventure of parenting Meredith. In the last few weeks, we have had a lift system installed in our main floor bathroom and in Meredith’s bedroom. Since December, when we first started entertaining the idea of taking this next step, we have both looked forward to it with the ever increasing growth and weight of Meredith and dreaded it as we recognize that our little girl is rapidly becoming a big girl.

In a previous post, I described how it is difficult to appear ‘normal’ when you are surrounded by equipment that symbolizes that in fact, nothing is really that normal~ the IV pole attached to your child, the wheelchair sitting at the back door, the syringes sharing a drying mat with the plates and cutlery, medications sitting side by side with cold medicine, fish oil and condiments in the fridge, the 40 foot wheelchair ramp attached to our back deck, to name a few. As Meredith grew so did the list of items in our home that were blatant reminders that our reality was one that we never desired or dreamed of.

I have a very hard time allowing my thoughts to travel back to a time when Meredith was held fifteen hours/ day. I held her for 8+ hours of that myself most days; her little body arching and writhing as I moved with her amazed that such a small person could expend such strength and energy. When it was time to get a wheelchair, we welcomed the potential relief it could bring but we also hated the thought that our perfect little baby would find her way around the world confined to a wheelchair. It turned out that she couldn’t tolerate it and so we went back to the holding until we could no longer manage. As we approached her 9th birthday, we finally freed ourselves (and her!) from our arms and her world expanded as she went from stander to futon to wheelchair for walks outside.

Since December, Meredith’s “spasms” have been brought under control by seizure medication. Consequently she is moving less, resting more and packing on the weight at a remarkable rate. I felt the urgency of a lift system by the fall knowing that we needed to have a back-up before it became a necessity. My husband was more hesitant as he wasn’t feeling the strain of lifting and carrying Meredith as much as myself and the workers were and truthfully, it was challenging to wrap our heads around the fact that her bedroom, which we specifically designed to NOT look like a medical space, would now have a white tracking system drilled into the ceiling.

And so as we waited for funding to get organized and installers to be available, we had to gradually accept that this was just another step on the ladder of raising a child with disabilities. It would only make sense that all of these things that make life a little easier on us should be welcomed and celebrated. They also act as signposts that we are leaving one stage behind and entering another one.

This one is admittedly tough as I know my arms and my heart will have a harder time letting go of the familiarity of holding this child for 10+ years. I also know from past experience that in no time, we will be pros at using the lift system and will wonder how we ever managed without it. And that is what I choose to focus on.

 

 

 

 

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One Comment
  1. Lana permalink

    This post makes me want to hug you and hold YOU for a change. The last line makes me smile and say “Atta girl.” xoxoxo

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