The Long Road

The challenges of raising a child with OI with other disabilities

I'm the mother of an adult son wth O.I. who has had to overcome the stigma of being disabled and also mentally challenged, changing the views of others and educating them about O.I. Many have never heard of this disease.

James experienced his first fracture when he was nine months old, and from then on it seemed to be all the time and, and our extended family were the medical people who were always dealing with. It is believed now that his retardation was from his disease, it was discovered at Children's Hospital, Boston, Mass.

James has three siblings, and two of which cannot accept him, and have nothing to do with him. How hard is that? Hard.

School was not a good time for James, kids could be cruel. The students taunted him and pushed him, and he would get fractures from these situations. His biological father left when he was six, could not accept James or the imperfect son, so you see the battle he has had to fight.

So as a mother, you become his advocate to fight for his rights take nothing for granted. James has had numerous fractures, he has rods in both femurs and he has had three open heart surgeries, and many other surgeries to numerous to count.

His world has been hospitals, labs, clinics, specialist and doctors offices. He takes a large assortment of medications, he is hooked up to the VNA and other support systems us, we are it and he has taught us so much through this.

James is a high functioning adult, loves people and we are blessed for having him, he has taught not to take anything for granted look at things with simplicity and love. He has an apartment in our building, to help him maintain as much independence as he can, he does quite well. He has days that are very difficult because the O.I. has affected his respitory system and his heart, he has CHF. His attitude is great and through this the medical field has learned alot about O.I. especially his primary doctor, who has kept on top of his situation, they have gained a sense of humor and this has helped James cope with his health.

James has a step father for over 30 years, he has been so good like being his real biological father. We treat James as an adult, becase thats what he is. We tell him he is one of many who have to set the pace for others, he has been involved in speaking on behalf of the disabled, he has been a spokesman for O.I. what its like and raised money for the O.I. Foundation. He is active in other charitable organizations, his community has become a more educated place because of James and many like him.

They never thought he would live beyond 14, well he has beaten those odds. We love James and will always fight to make life better for him, he has given us more then he will ever know. He has such an innocense about him, he becomes contagious.

 

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