DAY 7. AN IMPORTANT INCIDENT

Identify an important incident that changed the course of your life because it was one of these:

• beautiful

• frightening

• unusual

• spiritual

Write the story of that event and indicate how it helps you explain what you went through to accomplish your mission.

 

Examples

Frightening

Having a child with a disorder I and doctors knew little about was frightening. I had absolutely no experience in dealing with a family member with a serious health issue. Worse, the family member was my beautiful newborn infant son.

 

Like all new parents, when I held my newborn son, Andrew, in my arms twenty-three years ago it felt incredible!  After his difficult birth– he was a stubborn baby and labor was long and painful – he had to remain in the hospital for a few days to be treated for jaundice. But once he came home, he brought us the joys every newborn brings. He was warm, he was cuddly, he was our second son. 

​

As I was feeding him and he would look into my eyes, I could sense the bond every mother has with her child. He cried a lot and often, and I probably was getting about three hours of sleep each night, but the warm gaze of those eyes was my caffeine. During one of these special moments while feeding him when he was three weeks old, I felt an unusual jerking or spasming of his left arm that continued for about two minutes before stopping. The same spasm would return at other times throughout the day.

 

My level of concern was low at first, but when it didn’t disappear after a day or two, I took him to the pediatrician who immediately checked him into the local hospital. My level of concern rose to a much higher level. After two days of tests, including an MRI, and visits from a neurologist and an ophthalmologist, the diagnosis was made. When the doctor told us the name of the disorder, our family and friends (and even most of the doctors and nurses) had never heard of it. Andrew had a disorder called tuberous sclerosis complex (TSC).

 

The initial moment when the diagnosis was made was less frightening than the moments of not-knowing. I think I can attribute this to the professional and caring way the three doctors and the nurses on staff at the time handled the case. They were calm, thorough, and supportive. At no time did I feel things were hopeless. Once a few more tests were run the next morning, we were given medication for seizure-control medicine and happily left the hospital for home.

 

Before the age of the Internet and Googling anything, we could get very little information about it other than what the neurologist told us. It involved non-malignant tumors on the body’s organs. For Andrew, it meant the spasms in his arm were actually seizures as a result of brain tumors. Tumors were also seen in his eye. According to the information I found in my own search, the prognosis for someone with tuberous sclerosis was not good. Manifestations included intractable seizures, developmental delay, intellectual disability and autism, along with physical problems resulting from the tumors on the organs. Added to that was a life span that I had difficulty saying (and I won’t now because so much progress has been made since then).

             

Fortunately, a young nursing student gave me the information she found about a group that might offer help.  Four mothers founded the National Tuberous Sclerosis Association (NTSA) in 1974 to generate awareness and provide hope to those that shared the common bond of tuberous sclerosis complex. It was a phone call to this organization that, along with faith in God and lots of prayers, got us through this difficult time and set the groundwork for Andrew to be the dynamic young adult he is today.

            

So began our intimacy with this disorder – which so many knew so little about.

​