The Beginning
6 1/2 years ago we were preparing for the birth of our firstborn.
Over time, loss, and prayer, our little girl would soon be joining our
family. We imagined how life would change. We envisioned a joyous
future filled with sports, school events, graduations, etc. Fast
forward to July 27th, 2012. Our lives were changed forever, in more
ways than one. We added the titles of 'Mom' and 'Dad' to our resumes.
Life couldn't be sweeter. Our spunky, strawberry-blonde,
full-head-of-hair baby was here. Those were the golden years. Those
are the memories that I want to bottle up and store in a secret
compartment of my heart to never be taken away. All was as it should
be, until 3 months of age.
Soon Bridget developed recurring ear infections. Her first set of tubes was at just 6 months of age. As new parents we leaned on family, friends, and doctors while working through hearing issues. From all other aspects, Bridget's development seemed to be right on track. She was eating, clapping, mobile, and even beginning to speak. Everything came to a head between the ages of 18 months and 2 years. Suddenly it seemed as though time stood still in the milestone department.
Questions. So many questions. How come Bridget wouldn't respond when we were speaking to her? Why has her speech stalled out? Why is she constantly squinting and holding her books so close to her face? The simple things (ex. swinging a bat, playing with toys, attention span) appeared to be disappearing before our very eyes. First came the glasses. Next, a purple hearing aid for her mild hearing loss.
There is something to be said about this time of our parenting lives. I know I can speak for both of us when I say that we questioned ourselves. We had doubts in our parenting abilities. How come we can help our students and athletes be successful, but not our own daughter? Whenever I would voice my concerns to friends or family they would say, "She'll get there, it just takes time". But we knew in our hearts, that something was not right.
Bridget's development plateaued. It didn't matter how long we worked to potty train her, read her books, work on her colors, shapes, and the most basic of words, Bridget just couldn't make progress. At some points in her life she was going to OT, PT, and also speech. No one could give us answers or any reasons for her lack of development in all areas. Our child development doctor had us do an initial blood test, we came back empty-handed. Through trial and error, more medicines that I can count, a heart surgery, multiple sets of tubes, and mama bear aggressive pleading for answers, we did yet another more advanced genetic test.
We were told it would take months. During the course of this time we welcomed another child, Luke, battled the toughest summer with Bridget (forgetfulness, pacing, uncontrollable crying), and tried our best to carry on with life. And then, on October 11th, we were faced with the news.
It completely took my breath away. I felt my body melt into the floor. There is no correct way to process being told that your child has a fatal degenerative syndrome. I thank God that Michael was the one to answer his phone and have the news delivered to him first. Bridget has Sanfilippo Syndrome Type A. 1 in 70,000 children suffer. Life expectancy is very low. We always knew her intellectual growth was stunted once she reached the age of 2, and now we know why. She will never make any more growth. She will always work in reverse. This syndrome is called Alzheimer's for children, and it's a parent's worst nightmare.
Soon Bridget developed recurring ear infections. Her first set of tubes was at just 6 months of age. As new parents we leaned on family, friends, and doctors while working through hearing issues. From all other aspects, Bridget's development seemed to be right on track. She was eating, clapping, mobile, and even beginning to speak. Everything came to a head between the ages of 18 months and 2 years. Suddenly it seemed as though time stood still in the milestone department.
Questions. So many questions. How come Bridget wouldn't respond when we were speaking to her? Why has her speech stalled out? Why is she constantly squinting and holding her books so close to her face? The simple things (ex. swinging a bat, playing with toys, attention span) appeared to be disappearing before our very eyes. First came the glasses. Next, a purple hearing aid for her mild hearing loss.
There is something to be said about this time of our parenting lives. I know I can speak for both of us when I say that we questioned ourselves. We had doubts in our parenting abilities. How come we can help our students and athletes be successful, but not our own daughter? Whenever I would voice my concerns to friends or family they would say, "She'll get there, it just takes time". But we knew in our hearts, that something was not right.
Bridget's development plateaued. It didn't matter how long we worked to potty train her, read her books, work on her colors, shapes, and the most basic of words, Bridget just couldn't make progress. At some points in her life she was going to OT, PT, and also speech. No one could give us answers or any reasons for her lack of development in all areas. Our child development doctor had us do an initial blood test, we came back empty-handed. Through trial and error, more medicines that I can count, a heart surgery, multiple sets of tubes, and mama bear aggressive pleading for answers, we did yet another more advanced genetic test.
We were told it would take months. During the course of this time we welcomed another child, Luke, battled the toughest summer with Bridget (forgetfulness, pacing, uncontrollable crying), and tried our best to carry on with life. And then, on October 11th, we were faced with the news.
It completely took my breath away. I felt my body melt into the floor. There is no correct way to process being told that your child has a fatal degenerative syndrome. I thank God that Michael was the one to answer his phone and have the news delivered to him first. Bridget has Sanfilippo Syndrome Type A. 1 in 70,000 children suffer. Life expectancy is very low. We always knew her intellectual growth was stunted once she reached the age of 2, and now we know why. She will never make any more growth. She will always work in reverse. This syndrome is called Alzheimer's for children, and it's a parent's worst nightmare.
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