July 20, 2010

Burden Lifted

Have you ever had something weigh you down (either literally or figuratively) for a long time? You get used to the burden or discomfort, and after a while it becomes your new normal; you don't even feel it. And when the weight is finally taken away, you realize just how burdened you were. For example, while training for a half marathon last fall I fractured a toe, and had to wear a walking boot for a few months. It was heavy and cumbersome, and when I finally was able to live my daily life sans boot, I felt so light and free.

That's how I've been feeling ever since A got her g-tube and trach removed a few days ago. She had had the feeding tube since 2 months old (well, really since 2 days old when she initially had a tube in her nose) and had the trach since 4 months old. Since she just turned 4 years old a few weeks ago, she had had the tubes virtually her whole life. I knew no different with her. My "new normal" became things that moms with typical kids would never understand: learning how to operate the machinery that would help her eat and breathe, ordering her medical supplies on a monthly basis, lugging a heavy suction machine around everywhere we went, shuttling around town every day for hours upon hours of therapy, being restricted on where we could go (no beach or pools for my daughter!) or when we could travel (it was advised not to take her on a plane in the fall/winter, which is cold and flu season). Since only my husband, best friend, nurse and myself knew how to take care of the trach, my "me time" was contingent on one of these three people watching her, and the date-nights with my husband had to be booked far in advance with either my best friend or nurse. The family joke was that she came "some assembly required" and trust me, it took a long time (especially post-bathtime) to get her ready...between caring for her breathing tube, feeding tube, hearing aids and glasses, she certainly had a lot of extra parts! Getting my son bathed and in bed was easy: just toss him in the tub, get him out, brush his teeth and voila, we were done. With A, it was so much more than that, a process that I quickly got used to but was a pain nonetheless.

Today I had a swim lesson at my gym (I am training for a triathlon and need help on my form and breathing). I had specifically scheduled the lesson for today, as normally I'd have my nurse to watch A. But our nursing care stopped immediately last week upon the removal of the g-tube and trach. At first I was going to cancel the lesson, as I certainly couldn't bring her to the pool. But then I remembered that my gym has a child-care room. A could go to daycare! It was a revelation....I could depend on other people, not just the 3 aforementioned, to watch my baby! I went a bit early, filled them in on her history (ie "See that gauze on her neck? That is where a breathing tube used to be") and left her. I had a great lesson and came back to find her happily playing. She did great! My daughter in daycare! Who knew?!?

In addition to not having to order supplies, lug around a suction machine, dye trach ties, and do the tedious tube care every day, I am looking forward to other things. Like being able to book our babysitter to watch BOTH kids and have more date-nights with J. Like putting A in camp next summer (with her trach, I'd have to bring our nurse, and also being around camp water sports don't mix well with a trach). Like signing her up for "lunch bunch", which is where kids at her preschool have lunch after class, but I never did this last year because I didn't feel comfortable asking our nurse to sit there for an extra half hour (she was already there for 3 hours!) Like not having to change her shirt in the afternoon because her stomach contents leaked through and stained it. I am very much looking forward to taking her to the beach or pool, but that will have to wait until the stoma is stitched up in 6-12 months.

This is just a partial list of what I can do now....of what A could do now....and I am LOVING the possibilities! The truth is, we will always have some extra things to do for A. She still has hours and hours of therapy a week, medication to order, and hearing aids and glasses to care for, but this is all minor compared to the care of her tubes. This weight is lifted off my shoulders, and I am loving the freedom!


  1. "some assembly required" heh.

    Enjoying reading about your burdens lifted and her freeing health.

    Here's another blog post about how good the life of a child with CP can be:


  2. So happy to read this post & hear how well A is doing!

  3. I am still in awe of all that you learned to do and did so well-------and it all paid off!!!


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