I raised a profoundly disabled child — this is what it’s really like
ABC News

Don’t you ever feel bad for taking Chante as she was as running with her. People do not understand that person is not their disability, you do and you put it beautifully into words. Write a book. You did what you had to as her advocate and I say good for you. I have some issues that developed late in life and as it turns out they were always there, with age they just rose to the surface and got worse. Last year I could not walk, I can now thanks to PT, training, surgery and two walking sticks. I will forever remember how invisible I felt while in a wheel chair. I still experience having to walk around people who are “normal” as they stand in my way. I ask myself if they could not simply step to the side for me but it rarely happens. I wind up circumventing them with my sticks. I call it my “extra exercise” and mentally say “screw them”. Maybe one day they will be in my spot and realize how difficult it can be.

What has flumoxed me and you hint at it, is that older people are the pinnacle of misunderstanding and rudeness. When I have even looked like I needed help or a hand up it has been the younger crowd that has lept to my aid, holding doors, offering me an arm to go up a few steps, carrying a tray or glass of water for me. I do not ask them to do any of it as I can manage to work it all out myself even if I have to make 3 trips to accomplish my goals, but the younger crowd, about 22 to 32 seems to be different in regards to helping people. Now, I rarely ask for help, I want to do for myself, I like doing that. I can be incredibly slow but so what? I now use the sticks primarily for balance and not for support and only in rough, uneven terrain. I have had some amazing conversations with young men and women who I otherwise would not have ever talked with. They may not be the experienced people in life but somewhere along the way they learned an important lesson, be kind, be helpful.

Again I say, write a book, tell Chante’s story and get it out there. She was a light in a dark place and you did your best for her. That is the job of a “mum”. Maybe you can change some minds about kids and people who are not as fortunate as some of us.

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