A triumph of life over challenge
When our son Tyler was born at 24-25 weeks gestation weighing a mighty 1 lb. 5 oz. we knew our world would never be the same. For many years life was full of physical therapy, occupational therapy, speech therapy, support groups, IEPs, METs, etc. (Tyler's younger brother being born a scant 8 1/2 months later at 31 weeks gestation, weighing 2 lbs. 10 oz. made it all more exciting!)
Now, 19+ years later I look at my wonderful son and sometimes I'm amazed how far we have come. I've had quite a few people tell me I should write a book and share our experiences. I don't know if I could do that. It would be opening my heart and mind to things long buried. But, it would also remind me of the triumphs and joys we've had along the way.
When Tyler was born, we were blessed to have him (and his brother Logan) in the expert care of the Neonatal doctors and nurses at Bronson Methodist Hospital in Kalamazoo, Michigan. These women and men took tender care of our boys, and their parents. I'm forever grateful to them. Either at birth or shortly afterward Tyler had a grade IV bleed in the center of his brain resulting in brain damage. If he lived we knew he could face serious developmental and medical challenges. However, being people of faith, we placed the outcome in God's hands.
I won't say it has been easy, because it hasn't. Tyler was diagnosed with cerebral palsy, has significant vision issues due to Retinopathy of Prematurity, is deaf in one year, blah, blah, blah. We were told "by experts" that he would go blind, would be severely retarded, would never speak, would be lucky to hold a job, blah, blah, blah. He came home from the hospital after 100 days in the NICU on oxygen, an apnea monitor and meds and more meds. I had to run a tube down his nose into his stomach to supplement his bottle feedings.
Raising a child is hard work. Raising a child with challenges is extremely hard work. Tyler didn't walk until he was 4, first with a walker and then independently. I can still put myself in that moment when he had just received his walker and walked down the hallway at his school all by himself for the very first time. I can still see the huge smile on his face as he flew past me and headed down the hall to the doors. That will forever be one of the best moments of my life. He wasn't fully toilet trained until he was 7. We had a rotating door of experts and specialists and social workers and therapists through our house.
At the age of 2 1/2 I realized Tyler could read. He was taking a bath and started reading off the names of the soap bottles on the edge of the tub. So, I started testing him. I would write a word on the MagnaDoodle and the silly boy was reading them back to me. Shortly after that, Tyler was diagnosed with Autism.
I have to say, all the physical stuff that we went through with him was easier to deal with than the diagnoses of Autism. It was a mystery. There was no "cause" and certainly no "cure". All the experts contradicted each other on the approach, therapies, etc. It was a baffling new world we were plunged into. There were the stages where he would behave in ways we couldn't figure out, couldn't control and couldn't reason with him.
Fast forward to now. I look at my handsome, funny, loving son and reflect how truly blessed we are. He has taught me more about life, love, and overcoming adversity than I could ever teach him. I've often said that parents with children with challenges rejoice in the milestones more than those with typically developing children. It's not that there's more love, but there is more work just to get to the milestone. Tyler has taught me to look at the world in a different way; to appreciate those who think differently. He has shown me the influence a sibling can have as his relationship with his brother Logan shook birth order dynamics. Tyler wouldn't be the man he is today without his 8 1/2 month younger brother. Logan is a hero. Tyler has taught me to rejoice in the small triumphs as well as the big ones. The biggest thing Tyler has taught me is to appreciate the blessings of each day.
If I could go back and talk to my 25 year old self facing all of the things that were ahead of us, I would tell me not to believe the experts (I never really did anyway). I would tell me to let go of the expectations and enjoy the ride more, and worry about what other people thought less. I would tell myself to trust my gut instincts more and second-guess myself less. And, I'd tell me that Autism is nothing to be afraid of, but that it's only a label, not a person.
I don't know what the future holds any more now than I did 19 years ago. But, I know Tyler will find his way and teach us all in the process. Maybe I should try to write that book; but it's really his story, not mine that I would tell.
Now, 19+ years later I look at my wonderful son and sometimes I'm amazed how far we have come. I've had quite a few people tell me I should write a book and share our experiences. I don't know if I could do that. It would be opening my heart and mind to things long buried. But, it would also remind me of the triumphs and joys we've had along the way.
When Tyler was born, we were blessed to have him (and his brother Logan) in the expert care of the Neonatal doctors and nurses at Bronson Methodist Hospital in Kalamazoo, Michigan. These women and men took tender care of our boys, and their parents. I'm forever grateful to them. Either at birth or shortly afterward Tyler had a grade IV bleed in the center of his brain resulting in brain damage. If he lived we knew he could face serious developmental and medical challenges. However, being people of faith, we placed the outcome in God's hands.
I won't say it has been easy, because it hasn't. Tyler was diagnosed with cerebral palsy, has significant vision issues due to Retinopathy of Prematurity, is deaf in one year, blah, blah, blah. We were told "by experts" that he would go blind, would be severely retarded, would never speak, would be lucky to hold a job, blah, blah, blah. He came home from the hospital after 100 days in the NICU on oxygen, an apnea monitor and meds and more meds. I had to run a tube down his nose into his stomach to supplement his bottle feedings.
Raising a child is hard work. Raising a child with challenges is extremely hard work. Tyler didn't walk until he was 4, first with a walker and then independently. I can still put myself in that moment when he had just received his walker and walked down the hallway at his school all by himself for the very first time. I can still see the huge smile on his face as he flew past me and headed down the hall to the doors. That will forever be one of the best moments of my life. He wasn't fully toilet trained until he was 7. We had a rotating door of experts and specialists and social workers and therapists through our house.
At the age of 2 1/2 I realized Tyler could read. He was taking a bath and started reading off the names of the soap bottles on the edge of the tub. So, I started testing him. I would write a word on the MagnaDoodle and the silly boy was reading them back to me. Shortly after that, Tyler was diagnosed with Autism.
I have to say, all the physical stuff that we went through with him was easier to deal with than the diagnoses of Autism. It was a mystery. There was no "cause" and certainly no "cure". All the experts contradicted each other on the approach, therapies, etc. It was a baffling new world we were plunged into. There were the stages where he would behave in ways we couldn't figure out, couldn't control and couldn't reason with him.
Fast forward to now. I look at my handsome, funny, loving son and reflect how truly blessed we are. He has taught me more about life, love, and overcoming adversity than I could ever teach him. I've often said that parents with children with challenges rejoice in the milestones more than those with typically developing children. It's not that there's more love, but there is more work just to get to the milestone. Tyler has taught me to look at the world in a different way; to appreciate those who think differently. He has shown me the influence a sibling can have as his relationship with his brother Logan shook birth order dynamics. Tyler wouldn't be the man he is today without his 8 1/2 month younger brother. Logan is a hero. Tyler has taught me to rejoice in the small triumphs as well as the big ones. The biggest thing Tyler has taught me is to appreciate the blessings of each day.
If I could go back and talk to my 25 year old self facing all of the things that were ahead of us, I would tell me not to believe the experts (I never really did anyway). I would tell me to let go of the expectations and enjoy the ride more, and worry about what other people thought less. I would tell myself to trust my gut instincts more and second-guess myself less. And, I'd tell me that Autism is nothing to be afraid of, but that it's only a label, not a person.
I don't know what the future holds any more now than I did 19 years ago. But, I know Tyler will find his way and teach us all in the process. Maybe I should try to write that book; but it's really his story, not mine that I would tell.
.JPG)
Comments
Post a Comment