Update: My son is now turning 21. With the significate changes made in medical genetics, he has been diagnosed with Baraitser-Winter Syndrome. Don’t worry no one has ever heard of it either. Apparently, at this time there are only 50 confirmed diagnosis in the world! Hard to believe isn’t it? The good news is my daughters chance of having a child with the same diagnosis is one in a million. For that I am thankful!
The late teens were a little rough for a year or so, but I am so thankful that the “HAPPY” Ryan is back! We love him dearly!
Back to the original post…
I have thought about writing this post for some time now, and I as I sit here today, I am not sure what to write? Today we are Celebrating My Son’s 18th Birthday, and I thought it would be the perfect day to share what it has been like to raise a child with severe disabilities. While there have been so many rough times in our lives as parents and as a family I (we) try to stay positive. It would take an entire book for me to explain all that we have been through and honestly I am not sure my words could ever describe how dark some of those days were. At times, we were without a doubt a broken family.
This year, as he boarded his little yellow school bus, the driver indicated that my son was listed as starting the 12th grade. At his school, they are not in classrooms based on how many years they have attended school but on skill level. Yes, he should have been starting his last year of high school, applying to colleges, getting ready for prom and graduation. He might have played sports in high school or played an instrument in the marching band…but none of these things will ever happen. Instead, six days a week we have a revolving door of therapist and home health aides coming to our home to work with him and to give us a little break.
While it does make me sad that he (we) did not get to experience these great moments in life, I cherish more simple activities and achievements with him. I released those feelings years ago of “what ifs.” From the time, he was a baby until the age of three every day I cried. There I was, a young mother, with a preschooler and a medically sick child with severe disabilities. It was heartbreaking, and I couldn’t help feeling “why me?” What mother wouldn’t? To me, that was the time I grieved the son I would never have. There was a sense of loss there…at least for me. The son who might have played baseball or performed in the high school musical…whatever his passion would have been.
I realized from that point on I could not go on feeling this way. Somehow I had to find the inner strength to look at life differently. I had to stop feeling sorry for myself and vowed to give my son the best life I could…and I have. I am happy to say I look at life these days with my glass half full and feel blessed to have him to love! He may be nonverbal, but every day he tells me that he loves me!
He has taught me to have a HUGH amount of patience, compassion and to be giving. Although there has been so much heartache, there also has been so much joy. Just listening to him laugh (he has a great belly laugh) brings a smile to my face.
My daughter made this cute little collage that she shared on Instagram today for his birthday. She is turning 21 this spring. The years went by so fast.
I could go on forever, but I think I will keep this simple. Below I am listing all the things that he has been diagnosed with. He has had many hospitalizations, procedures and takes many medications.
Baraitser-Winter Syndrome. | Autism | OCD | Profound Hearing Loss | Crohn’s Disease | Exotropia – corrected with eye muscle surgery | Nonverbal | Walked at age 7 1/2
He has limited self-help skills and needs help with bathing, dressing, eating, and toileting as well as many simple daily tasks. There are probably more things, but over time I tend to forget!
If you’re ever having a bad day, keep this in mind… I have been toilet training him for 7 years! Talk about having patience!! He has made great progress with much fewer accidents – I am very thankful he has done so well! That’s right…I still carry a diaper bag…23 years 😉
Thanks for listening…