The other night I was coming home in a cab, my driver was from Afghanistan. He’s been here for close to ten years, works two jobs, has three children, two boys, and one girl. His wife, doesn’t yet have a strong grasp of the english language, and had even less four years ago when she gave birth to their daughter, and the doctors came to take her away. He shared with me that their daughter was born with a rare spinal cancer, he told me exactly which cancer it was, but it was at the end of a long dinner, and my brain doesn’t register medical terminology at the best of time. The bottom line is, his daughter had her first operation at one week, underwent treatment for close to a year, is four years old now, and cancer free. Unfortunately the ramifications of the disease are still with her, and them. She needs a wheelchair to get around. Which is fine when she and her mom are “walking” to a destination, but, something I had never thought of…is what happens when they all want to go somewhere as a family? How do they transport her?
He told me they do manage to get her around in the family van, but not readily, or easily. It’s especially a lot of effort for his wife, when she’s trying to take all three of her kids out on her own. They can get a specially equipped van, that allows them to have her wheel right inside it, and away they go, but the problem with this plan is the van costs $65,000.00.
That is a ton of money, for anybody, but especially for a man who is already working two jobs to make ends meet. We got to talking about the two cancer organizations I work closely with, and what they do for children with cancer. During our discussion I realized that there are no organizations, that I know of, who are devoted to “kicking in” to assist parents with children who end up requiring special assistance post surgery. For kids who might not ever walk again, who helps them cover the expense of making their homes accessible to their child? I had never, ever thought of this. All the children I’ve met who have kicked cancer’s ass, don’t have any special needs because of it, their homes didn’t require retrofitting, they can get themselves in and out of cars. This was new territory for me.
And it really got me thinking…is there any room in our social healthcare system to assist families in setting up their lives for children who post treatment, now have special needs???
Hmmm, hmmm, hmmm