GUEST BLOGGER: THE DAY THE CHANGED EVERYTHING—A PARENT’S PERSPECTIVE

Twenty-three years ago this past weekend, my life (and my family’s lives) would be forever changed. On any given Saturday morning in the Silva household, my parents received the news that I had Spinal Muscular Atrophy—an unfamiliar disease to many at the time. I was given very little hope from my doctors that I would live to see my second birthday. I was expected to succumb. The prognosis was certainly grim, but miracles do happen, and I believe I’m living through one every day of my life. Because I was only six months old at the time of my diagnosis, my parents have been kind enough to share their thoughts and feelings on that day in April of 1991. Here’s what they had to say.

 

In my mother’s words…

There are events in your life that you recall with such clarity that it seems they happened yesterday.  You remember where you were, what you were doing, what you were feeling.  Twenty-three years ago today was one of those days.  It was a beautiful sunny morning, and the four of us were getting ready for our traditional Saturday morning of character pancakes with lots of singing and playing.  Saturday mornings were always very lively.  Mom and dad would sing, Adam would dance and be silly, and Alyssa would be in her baby seat laughing and observing.  On that Saturday, the merriment stopped for a long time.

The telephone rang.  Dr. Yazbak, Alyssa’s pediatrician, called.  “I don’t want to talk over the phone”, he said.  I knew immediately, at that moment, my life would never be the same.  My usual reserved manner was tossed aside.  I couldn’t wait until he came over.  I needed to know immediately what my baby had.  I needed him to tell me she was going to be ok; that we could fix whatever it was.  With the deepest of anguish anyone could feel, I pleaded with him to tell me before he came if my baby girl was going to die.  I could tell in his voice he was distressed himself.  He replied, “She will succumb.”  I thought, “What the hell does that mean?”  My mind was in such turmoil, and my heart was aching.  I thought the word succumb meant pass away.  That couldn’t be what he meant.  My little girl is perfect, I thought.  She’s going to grow old, go to school.  She’ll marry the man of her dreams, have children, give us grandchildren.  What the hell did he mean by” succumb”?!

So he came.  On that beautiful sunny morning in April he gave us the devastating news that our daughter had a disease I had never heard of…Spinal Muscular Atrophy.  She had the most severe form called Werdnig-Hoffman, Type I.  He told us things no parent should ever have to hear.  Our daughter would probably not make it to her first birthday. Most children with this disease succumb by age 2.  We pleaded if there was anything we could do.  We’d go to the ends of the earth and back to help her.  I would have sold all my belongings, give my life if it meant Alyssa would be ok.  He told us there was nothing.  It was a rare disease, and there was no cure.  The only thing we could do was love our little girl and pray.

And that we did.  There hasn’t been a day that I don’t pray for God’s healing and mercy.  We vowed to give Alyssa all the love we could possibly give her and offer as much of life’s moments we could possibly offer.  I think I could fill up a lake with the tears I shed that first year, but in the midst of bone-deep pain and fear, the joy she gave us was far greater.  I never let her see me cry.  My husband and I decided we would give her the fullest and happiest of life possible.

When I think back on that day and that whole first year of Alyssa’s life, I can’t help but think how blessed and how lucky we have been to come so far.  We celebrated her birthday at six months of age with a beautiful pink and white cake because we thought she would never see her first birthday.  Who was to know that 23 years later we are still being showered with God’s grace.  Yes, my life did change 23 years ago.  We have had many struggles, fears, and anguish; but more importantly, we have been blessed with an abundance of love and joy.  God has given us beautiful rainbows after each stormy time.  We have seen the best in human nature that we might not have noticed otherwise.  We’ve been showered with kindness and generosity not only from our families, but from friends and even strangers.  We have seen her grow into a beautiful woman with an effervescence for life and for living.  And 23 years later, I wake up every morning and do what Dr. Yazbak told me to do on that fateful day… I thank God for another day and pray He give the four of us many more together.

 

In my father’s words…

I had always wanted a little girl, one that was pretty, sensitive, smart, and caring. Alyssa was a beautiful baby, perfect in so many ways. However, at three months of age we noticed a tremor in her hands, and soon after, major developmental milestones were missed such as rolling over or lifting her head.  We took her to see a neurologist who ordered some pathology tests to analyze a nerve that would be removed from Alyssa’s leg.  This analysis would determine the diagnosis and hence the future of this beautiful baby…..or would it?  We were told it would take about two weeks to get the pathology results.  Those two weeks were an eternity – waiting and waiting for the doctor to call with the results.  I kept my rosary with me and prayed when I could.

We decided to visit a psychic, someone who could possibly give us an idea of what could be wrong with our daughter. My mother and father-in-law heard of someone in a nearby town and called to make an appointment. So, we packed up my family and drove with my in-laws to the psychic’s home. I had my rosary in my pocket and prayed while we drove to the house; but, en route, I decided that I was not going into this unknown woman’s home with my son. So, when we stopped for gas, I went into the mini-mart and bought a reader’s digest magazine to read.  When we arrived at the house, my son and I stayed in the car and waited while the psychic looked into my daughter’s future.

My son colored, and I fanned the reader’s digest magazine for an article to read.  I chose a story about hope because that was what I was needing at the time. I read about a little girl with a rare terminal disease but who had outlived everyone’s expectations.  The article explained what life was like for this young girl and the difficulties that simple, normal daily life presented to her.  Soon my in-laws, wife, and daughter came out of the home.  The psychic said Alyssa had a minor blood disorder.  We drove home feeling a bit relieved.

The call finally came on April 19, 1991.  But the doctor did not want to discuss the results over the phone.  He wanted to stop by the house and discuss the results.  He said he would stop by tomorrow.  It was then I knew something significant was wrong…a doctor stopping by the house??  I began to pace and feel anxious. I grabbed my trusted rosary, put it in my pocket, and began to pray.

The pediatrician was a large man and spoke with a slight accent.  I remember him sitting on the couch and sinking far down into the cushions. He quickly explained that the news was not good, and he never had a patient with this disease. He said, in his slight accent, “Your daughter has a disease called Spinal Muscular Atrophy type 1. It is a rare disease, and she will succumb to the disease by the age of two.” I had to think for a moment and digest what he said– succumb? Is that what he said? The accent confused me for a second. I had never heard this word used in that context, but I quickly understood. I asked, “Does she have any chance at all?” He thought for moment, looked me straight in the eyes, and said she had a one percent chance.  My heart sunk, and all I could think of was how to protect my wife.  How would I get us through this?

He soon left, and my wife and I were left bewildered…shattered…silent and motionless. Then, I suddenly remembered the Reader’s Digest article I had read. Was this the same disease as the young girl had in the article? I quickly retrieved the magazine and sure enough it was the same disease.  I read it over and over again trying to understand my family’s future. It was only a glimmer of hope, but it was something. The article explained much of what we would experience over the next 20 years. Was it a small miracle? From that point forward, I vowed to myself to do my best to sustain both my daughter and family. I’d do whatever it would take.

Today, I have a talented, beautiful, and caring daughter. She is 23 years old but beyond her years in wisdom.  I had no idea what life would be like back on April 20, 1991. The road to now has been difficult at times, but it has also been spectacular. It sounds like anyone’s life, doesn’t it? I have learned so much from my daughter, more from her than from anyone else in my life. And, most of all, I am grateful that I got the perfect little girl I always wanted!

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