Today's post come's from Jim Hines. Not the father of one child with disabilities, he's the father of TWO boys with a rare condition.
Through it all, Jim (and his ex-wife) Mary have been rocks. No complaining, no whining.....just the best parents they could be.
And on top of all that, as you'll see in the story, they have been wonderfully involved in helping others in similar circumstances.
Enjoy this amazing and uplifting story!
Rare Perfection Times Two
It was an October night when I arrived back home from the hospital, excitedly calling some friends to inform them that my son, Brendan, had been born that morning. The phone rang as I was about to drift off to sleep. It was Brendan’s mom, Mary. She was crying and she informed me that Brendan was having seizures and was in great distress. I quickly drove back to St. Joseph’s Hospital in Tacoma, where a couple of catholic nuns were praying next to Brendan. All four of Brendan’s grandparents joined us as they readied his transport to Tacoma General Hospital’s neonatal intensive care unit.
Our admitting doctor informed us that they were going to run a series of tests, including a spinal tap. Around 3 AM, he sat down with us and told us that he did not know what was causing Brendan’s seizures, and I will never forget his next words, “children that present with seizures right after birth typically do not have very good outcomes”. He predicted that Brendan probably had some sort of metabolic disorder or a rare genetic condition. The euphoria that that was present in all of us only hours earlier was quickly replaced by shock, sadness, terrifying fear, and utter confusion. How does this happen?
Brendan wound up hospitalized over one dozen times his first year and we almost lost him a couple of times. Today Brendan is 19 years old. While he does not speak in words, except “Mama and Bubba”, his eyes, expressions and joyful spirit speak to us in ways more beautiful then I could ever articulate. He is in a wheelchair, but that doesn’t stop him from getting around town with us. Quite simply, Brendan is the most beautiful person I have ever encountered.
Two years after Brendan’s birth, our second son, Brian, was born. We were nervous during the pregnancy, but were reassured by a local geneticist, who had told us that our chromosomal make-up revealed no abnormalities. After Brian’s birth, we were cautiously calling friends and elated with the idea that Brendan would have a brother. This time when the phone rang, I didn’t even need to answer to know what was happening. Brian presented with seizures several hours after his birth, and we were confronted with the catastrophic reality that we were now the parents of two boys who were born with a devastating and rare abnormality. This time at the hospital, I slumped into a corner with a towel and started crying. How are we going to do this? How does this happen……twice?
While many of our hopes and dreams were now clearly gone, we dived in the only way we knew, to love and fight for our sons every single step of every single day. Today Brian is a beautiful, sweet 17 year -old boy. His health is often quite delicate. He still has seizures around once a week. Two years ago, he was also diagnosed with Crohn’s Disease. I thought we were watching him break down right before our eyes. I was starting to prepare myself for the idea that Brian was not going to be with us much longer. Thankfully, Brian is much more stable today. I hate all of the needles, medications, seizures and limitations that come with his condition. But they are nothing compared to the everpresent love for my Brian. To me, he is perfect in every way. Okay, so he also doesn’t speak words and can seem a bit “distant” or in his own world. But once that smile emerges and he looks at me with those beautiful eyes, I connect with Brian in a way I have never connected with anyone else in this life. He too, is perfect, just like his brother, Brendan.
The health challenges over the years are too numerous to count. The trips to clinics, therapy and neurology, the hospitalizations, the attempts to gain a diagnosis. That alone lasted five years. At that point, after muscle and nerve biopsies, we knew it was time to bring Brendan and Brian home and give them as good a life as we possibly could.
People will ask what it is like being the parent of two special needs children. It is certainly not twice as hard as having one; it is about ten times harder. I tell them that the lows are lower and the highs are higher, like when an educator called me on my cell phone to tell me that Brian had taken his first independent steps on the ball-field at school. He was nine years old. We have had our lives enriched in ways not possible had our boys been born “normally developing”. We have met countless families along the way. We have been touched by the care and concern of so many health care professionals. And, like others, we have attempted to help other families through our experience, strength and hope.
When our boys were very young, we met up with David and Leslie Kantor, whose own daughter, Taylor, was also receiving therapy at Mary Bridge Children’s Hospital’s Therapy Services. The Kantors started a fundraiser the previous year and invited Mary and I to get involved in year two. I was put up on stage as Master of Ceremonies that second year of “Bids for Kids”. I had never emceed anything in my life. This Fall, I will have the incredible honor of being emcee again as we celebrate the 20th year of “Bids for Kids”. We will surpass $1.4 Million raised for Therapy Services and other needs affiliated with Mary Bridge Children’s Hospital. So many incredible volunteers, unbelievably generous support from friends, family and the community. An indescribable feeling of well being and satisfaction comes with simply doing for others. Friendships and lifelong bonds that would be impossible to convey unless you have “been there”.
Because of my sons, I have become something I was incapable of being had they not been delivered to us in such a special way. I have had the amazing honor of serving on multiple Boards of Directors, including Special Olympics. I made a run for public office in my local legislative district. While I am grateful for my job and business career, I left the corporate “fast track” and have been given a life of balance. Yes my job is wonderful and fulfilling. But my devotion to my sons has replaced any business ambition I may have once possessed.
My level of empathy and compassion are “off the charts”. My advocacy for my sons is fierce and only grows. I probably worry a lot more than most parents, but today it is manageable. For the most part, my sons live beautiful lives. They are happy and we will continue to adapt our lives to their needs as best we can. Brendan and Brian know love. They feel it around them constantly. I cannot begin to convey the gratitude for all those who have touched us along the way. The caregivers and school personnel, including para-educators. Our families and friends. Even wonderfully kind people who work in local restaurants and pizza joints who embrace us with open arms and upbeat smiles. They know beauty and perfection when they see it.
I know not what the future holds for our family. We were not given much hope as to the possible longevity of our sons’ lives, let alone their quality of life. Their underlying condition is so rare that we are literally “blazing our own trail”. Like other families, we are pioneers. We have to trust our instincts as we advocate for our boys.
I only encourage other parents with special children to trust their own instincts. I would say to advocate strongly on behalf of your child or children no matter what. Even health professionals are human. If something doesn’t “seem right”, it probably is not. Speak up. No one will possibly know what you know about these perfect beings.
I have come to realize that I was “selected” to be the father of Brendan and Brian. And it is the greatest honor bestowed upon me in this life. Nothing I have experienced even comes close. And nothing ever will. I am proud of my sons. They are perfect in every way. I have come to believe that kids like mine are the closest thing to perfection in God’s eyes. They do not harm others and are incapable of anything but love. And to think that I am their dad……wow!
For those families with a special child…..you can do it…..you will do it. And you will be blessed beyond your dreams. Allow this child…..these children….to create in you a person of great character and strength. And embrace your role as that of a member of a very select society. There will be highs and lows, but through it all, there will be love!