Caregiver

Do you suffer from the Impostor Syndrome?

This morning, I got notification that an article I had written had been published in the Rare Patient News.  The topic is traveling when you child has special needs.   I was excited to learn about it and was reminded of a skit by Steve Martin.  The new phone book arrived in the mail (this was

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What is today’s lesson?

Some days are hectic and some are relaxing.  Each one carries a potential lesson for us.  It is up to us to ponder, meditate and discover the lesson.  Some of life’s lessons are hard, others are easy.  Some lessons are learned through one experience, and others seem to take a lifetime. Quite a few times

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Events cause priorities to shift.

Just like most everyone I know, my calendar of scheduled appointments gets filled up.  Not all of these appointments are work related, some are lunches or dinners with friends.  Some of my appointments are self-care and pampering as well.  My days are busy.  Until something happens with Nick. Then everything changes in a moment.  My

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Nick was Determined!

Some days for Nick are better than others.  His capabilities and capacities seem to be variable.  When he is having a good day, we encourage him by letting him be as independent as possible in his self-care.  Sometimes if we are in a hurry or forget that he can do a task, he will remind

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Celebrating new skills!

This past weekend, Nick had a bit of a cold.  I was so grateful that he had learned to blow his nose.   He was 13 then. Back in the summer of 1993, (that sounds like the beginning of a song!) we took an epic trip to Ireland with our extended family.  Arden and I

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Life is full of opposites.

Yesterday as I was working on my draft rewrite of the book I am writing about being Nick’s mom, I noticed something incredible.  Our lives are full of experiences that create opposing emotions. For example, Nick was almost four when Derek was born.   The pregnancy was difficult for me, especially the last two months,

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Don’t compare life experiences, share emotions instead.

A friend of mine was recently diagnosed with breast cancer.  Another friend’s husband has just lost his job.  Arden and I have been helping Nick learn to deal with the side affects of increasing his seizure medicine to avoid seizure clusters.  These are hard things.  Each of these situations bring increased stress and heightened emotions.

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Keep on going, and going, and going.

I was chatting this morning with a mom who’s 16-year-old daughter has the same syndrome as our Nick.  She said that just when she thinks that she can’t do anymore, then somehow she keeps on going, just like the Energizer Bunny. I have an Energizer Bunny Christmas tree ornament that reminds me that I can

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Stop and smell the roses!

Every once in a while we all need a break from our typical routine.  When I was a young mom, a wise man told me that “A change was as good as a rest.”  We all look forward to our scheduled vacation time.  However, if we are overwhelmed, anticipating our future vacation might not be

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My child has seizures and a wheelchair, can we travel?

This blog I wrote is in response to queries I have received.  The answer is YES you can travel.   However some pre-planning and organization can help make the trip more relaxing.  Planning Your Trip: Familiarize yourself with where you are going.  There are websites and blogs about most major cities.  How accessible is the

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