It’s a boy! It’s another boy! The room gets quiet, doctors and nurses are scrambling. I must have been sedated because the next thing I remember is waking up alone and confused.
The next few weeks were filled with love, joy, worry, and sleepless nights. Typical for all new parents, but our babies seemed anything but typical. Each day there were new complications and new doctors. Days turned into weeks and weeks into months before our boys would be home. But no matter how grim, we never gave up hope.
We were told Matthew and Brian had multiple medical problems, were deaf-blind and would have great difficulty eating, walking, and communicating. We were told our boys had Charge Syndrome! The doctors were kind, but the look on their faces each time they came in the room spoke volumes. “There will always be challenges Mr. and Mrs. Murray, be prepared!” We thought, “Who doesn’t have a challenge in their life?”
We have spent the last 20 years providing Matthew and Brian the tools to help guide them through life. We were blessed to have a tremendous support system – (the affectionately named “Murraypalozza team”), every step of the way. Years of laughter and tears from dedicated teachers, therapist, friends, and of course family trying to raise the bar for Matthew and Brian even when the possible seemed impossible!
Success can only happen when you pull together as a team. We would spend countless hours going to specialists, learning sign language, and researching programs. If they were to walk, then we would create our own home made balance beam painted the brightest of red for them to see it. If they were to eat without tubes then we would slowly feed them with an eyedropper. If they were to interact with friends then we would try different social programs. If they would learn to read then we would adapt books. The bottom line is if they were to succeed we would not give up hope.
The years passed and different milestones were achieved, new challenges arose and before we knew it- High School! A decision was to be made, the decision to place our boys at the Perkins School for the Blind. This was one of the hardest decisions Jay and I would have to make as parents. How could we send our 14-year-old boys to a school in another state without us? Will they think we abandoned them, will the staff understand there needs, who will kiss them goodnight? That difficult decision for our family ended up being the best decision for our family! Although many miles away from us, we recognized that they were going to be given a chance to grow and mature in so many ways. They would create friendships, learn important life skills, gain independence and self- confidence regardless of their disabilities. It was time as parents to let go and watch them become successful.
Our hearts hurt for quite some time when they entered the program, but almost 6 years later at Perkins School and our young men are unstoppable. They are able to do things we never thought possible. One of the most exciting things is watching the two of them at work. When you are told early on that your children are deaf blind and would have many limitations, there is nothing better than beating the odds! They have jobs volunteering at a place called Cradles to Cradles and also do work at the Braille Talking library. They are on the track and field team, swim team, and Brian is even a part of the cheerleading team. At home they help with the laundry, love washing the cars, and one of their favorite things is working in their dad’s garden. The boys love bowling, miniature golf, fishing, eating out at restaurants, and traveling to Disney World! They have gone a handful of times and could tell you exactly how to get from one part of the park to the other. I guess OCD tendencies come in handy when you love reading maps!
We have had some extremely hard times, so I don’t write this article lightly as if some higher power made everything all right because life has challenged us every step of the way. What I can say is that Matthew and Brian’s needs have given us more than they have taken away! I get scared and cry a lot but then somehow I become resourceful, strong, and filled with tenacity.
Life will ALWAYS have challenges. The path you expected, as we did, for your children may be very different with lots of hurdles to jump over but you will make it over.
Life isn’t perfect, but it has perfect moments!
Look at these pictures. What started out, as a scary roller coaster ride in the NICU for many months now looks like this…WOW!
