Glennie's Story

Glenn Stewart Sinclair III was born September 16, 2002.  His arrival was greatly anticipated; while he was still in the womb I would walk into the room we had waiting for him and imagine what it would be like to put him to sleep in his crib, and to dress him in all his new clothes. 

After about seven hours of labor, Glennie was born, and my husband Glenn and I were thrust into the world of parenting.  Due to military standards, we were in the hospital for three days.  Glennie slept a lot, and it was often hard to wake him, even to nurse.  We figured he was tired from his journey into the world, and after three days, took him home to begin our lives as Mom, Dad, and son.

October, November and December were eventful; Glennie began to grow and began to hold up his head a little bit.  Since his birth, I had noticed that he breathed through his abdomen, but since the doctors had never said anything about it, I wasn't too concerned. 

January came, and funny things began to happen.  Most noticeably, Glennie's head would flop forward whenever we went for a ride in the car.  The doctor, as well as the rest of us, assumed he was just slow, so he prescribed more tummy time to help develop Glennie's neck muscles.  During this time, Glennie also began to sweat while he nursed, but once again, nobody seemed too concerned.

In February, Glenn Jr. had shoulder surgery and was granted 30 days of recovery time.  His parents had planned to come out to help  with the baby, but there was a huge snowstorm in the East and they weren't able to make it.  Instead, we went to visit them up in New Jersey after a couple of weeks.  The day we arrived, Glennie's grandparents knew there was something wrong with him.  He was extremely irritable from the plane ride, and seemed to be uncomfortable still.  The next day, we agreed to take him to the hospital.

We took him to the emergency room at Children's Hospital of Philadelphia, where he was admitted for hypotonia (limpness) and his belly breathing.  At that point, we had no idea what we were in for; I figured that if there was anything wrong with him, we would be able to handle it.

The following day, a neurologist who specializes in Spinal Muscular Atrophy came in to talk to me; and at that point it still didn't hit me how serious our situation was.  It was only a day later, when the pulmonology team came in to discuss our options that I finally understood that Glennie's health, movement and breathing would only get worse, until his body would finally fail him.

They still had to do some genetic testing before they could make a final diagnosis, and the results would take a week.  I held onto the small hope that Glennie didn't have SMA; that what was wrong with him was less severe and wouldn't take him away from us.

The results came back, and the diagnosis was confirmed; he had Spinal Muscular Atrophy Type 1, the most severe form.  Those days and weeks were spent in a state of shock; we were going to lose our son before he even got a chance to grow up.  He would never play ball with his dad, never sit up in a playpen and play with toys, never crawl or walk.  He would never graduate high school, or get married. 

Nobody ever imagines something like this will happen to them. We certainly never did.  I also never imagined when I left our house in Pensacola, Florida to visit my in-laws that February, that I would never return home.  Glennie was now unable to travel, so Glenn began to work on getting a military transfer up to Pennsylvania.

Those months were a whirlwind, and it sure made us re-think our perceptions of life, and of God.  I know as for me, living life with my son has strengthened my faith in our Lord and glorious Savior, Jesus Christ.  Although it may not seem like it, our situation with Glennie is a part of God's great and perfect plan, and will ultimately work out for good.  We cherish the time we have with Glennie, and know that we were chosen to serve as guardians to this child of God while he is here on earth.  We understand that ultimately, Glennie, as well of the rest of us, really do belong to God.  We are in God's hands,  and that is without a doubt the best place to be.


-Amanda Sinclair