Sometimes I ask, is it worth it?

As a consequence of his Lennox Gastaut Syndrome, Nick’s mobility has decreased over time and he has experienced regression of many skills that he worked hard to master.  So of course, because of this regression, his personal care needs have increased and sometimes it is hard work for us to do everything for him, especially when we are traveling.

We try to plan excursions and outings that are accessible and that he hopefully will enjoy.  Often he won’t say anything about the activities we are doing, and that leaves us guessing as to whether he is having a good time or not.  In addition, he often seems anxious to us because of his repetitive behavior and speech patterns.  He repeats the same questions over and over, even when we have answered him over and over.

We are currently spending two weeks on Maui, just the three of us.  Our pace is slower this trip than when we have traveled here with others.  We have discovered that Nick likes sitting at the open door to the balcony overlooking the pool, watching everything.  There is a waterfall just outside of our balcony so the sound is soothing and he loves watching the water cascading down into the pool.  The people in the swimming pool also catch his attention and he sometimes talks about what they are doing.

We are always walking a fine line between keeping him interested and engaged in what is going on while trying to make sure he avoids getting over stimulated and over tired which could bring on seizures.  This slower pace is more relaxing for Arden and me, but I wonder if it is a bit more boring for Nick.  He doesn’t verbally tell us that he is bored, but sometimes we think we can tell.  Then he just might surprise us and tell us that he loved it when we thought he wasn’t interested.

A friend recently reminded me that typically all parents are trying to make sure that their kids are happy.  It just can be a bit more of a challenge when the child can’t easily express their feelings and emotions.

Often Nick seems to be just sitting there is his wheelchair, not paying attention.  Then when I least expect it, sometimes hours or days later, he says something like, “Thank you take me on that boat.” or “I love that tree.  You love that tree Mom?  His smile melts my heart and again I do know that it is all worth it.  We will keep traveling with him because he loves it.

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  • Maureen Posted May 21, 2018 7:17 am

    You have given him so much joy and fullness in his life in so very many ways, including all the traveling. You can hardly know how very much it has all meant to him.

  • Susan Posted August 11, 2018 10:41 pm

    You are inspirational. Please add me to your blog

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