Its been several years since I posted. My last post I shared my sons story. An article titled Gods Handiwork. Joe will be turning 21 in a few months and this is such a milestone. I laugh when I think of the ignorance of some in the medical profession many years ago, “he won’t live to age 2 but if he happens to live that long he wont’ live to age 16” It wasn’t funny back then but it sure gives me a chuckle today. Joe is as special and wonderful a person as ever. I have been reading some of the posts from those who are much younger. To all of you all I can say is Keep the FAith!! Our kids are a gift from God and its their difference that makes them shine. It gets easier as time goes on. Loosing the school and teachers i have so relied on over the years is a tough change for me but I know God will direct me in whats best for Joe. He is Gods special one and only the best seems to come to my son. Thanks for listening.
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Happy Birthday, Joe! 21 years old is awesome. Thanks for sharing with us. It is wonderful to see he is doing well especially for those of us who are new to WHS. Clara, my grand daughter, just turned 2. So when they say they may only live to two years old it gives us fear!! But you give us HOPE! Like Joe, Clara is pure joy and I can’t imagine my life without such an awesome human being!!
Thanks for the update. It seems all of us with older children got the same dire predictions from doctors, but they cannot be blamed. Their information was based on what was available in a few out publications at the time. Treatment options were more scarce than information about the condition.
Interestingly enough, the best source of information and support can be other parents of children with special needs.
My daughter is 38 now. She finished school at age 20 and then attended a program for adults until she was 28. Since then she has not attended a formal program. She was happy doing volunteer work and pursuing her own interests. I hope your son will also find interesting ways to enjoy a fulfilling adult life.
Thanks for sharing. This is what I love to read. Doctors told us that Carolina will not live more than 6 months and she turned 6 on last June and at the age of 2 I went to see one of the Doctor and told him here is my little miracle and that He was wrong (Do not take it wrong that Dr was a wonderful, humble a caring Dr) he said I love when People proved that I’m wrong in this cases only God knows when is the time. Then reading this article help my faith getting stronger and realized that it people that understand what we’re being through.
Today I received a Christmas card with a picture of Joe and his father. You see, Joe’s mom is a friend of mine since grade school. We learned of Joe’s Wolf-Hirschorn Syndrome at a high school reunion when meeting his parents after many years. I learned of their faith and trust in God. I respect them deeply for their care and patience in raising their son. They have done what I could not and only God gives people like that the strength and fortitude–and love–to be parents to a special needs child. In the picture I saw a beautiful young man loving his father and it brought me a real reminder of simply what love is all about. Through all obstacles, through all conditions, through all things. Love is truly the greatest gift.