Caregiver

The day is finally here.

It is no secret that Nick loves airplanes. Everything about airplanes and airports. It is his passion and his hobby. He even tells us that he needs them. As expected, the day we travel is a red-letter day, clearly marked on the calendar on his wall. But so is “Final Packing Day.” Nick has termed

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Accepting what I cannot change.

I haven’t believed in the Serenity prayer for as long as I can remember. Oh, it was fine for others, those who weren’t as stubborn as me. I have always believed that if I tried hard enough, long enough, persevered through the hard times, I could accomplish whatever I wanted to. After all, that is

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What brings you comfort?

Nick has had a hard few weeks. He experienced two tough days of seizures and then it took him about four days to recover. For the past week, he has been getting used to the new seizure med. He says, “I am much better.” We really hope so. For dinner, we decided to give Nick

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Developing resilience.

Everyone experiences hard things. I have reached a point when I say “I can’t do this.” According to the American Psychological Association, resilience gives us the emotional strength to successfully adapt to difficult or challenging life experiences. Resilience is a person’s ability to withstand adversity, bounce back and grow despite life’s downturns. I have wondered,

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I am still learning patience.

I have known for over 40 years now that Nick has special needs.  Throughout that time, I have loved him, encouraged him, supported him, fought for him so he could get the services and therapies that he needed.  I understand what he is capable of and I know what is unrealistic expectations.  Most of the

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Finding my tribe.

18 months ago I walked into a hotel in Orlando wondering if it would make a difference.  It was the night before the 5th Lennox Gastaut Syndrome Foundation International Conference was starting and I had been invited to meet some of the other attendees ahead of the event. I usually shy away from meeting perfect

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Where’s the instruction manual?

Sometimes I have wished that kids came with an instruction manual.  This is especially true when raising a child with special needs. Most parenting books are designed to help parents gain the skills and expertise needed to raise healthy, well adjusted children.  Parents of kids with special needs desire that same thing, but the message

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My Definition of Crisis Changes!

My perspective concerning what constitutes a crisis can change in a moment.  Because of where we live, we are often without electricity for hours at a time.  Although this can seem like a hardship to bear, we really are comfortable. Arden has developed a backup-generator system that is automatic. It runs the furnace, many of

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Hypervigilance can steal our good health.

Recently I was told that the definition of “hypervigilance” is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect activity.  It may bring about a state of increased anxiety which can cause exhaustion.  The doctors explained to me that this was part of what I have

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