My mom

Those who know me, meaning that they might have seen me once in a Target, know that I have a handicapped brother. Those who know me so intimately, as to have, say, done my hair, know that he is the reason behind my career choice. Actually, he and my mother. The challenge of raising a child in a resource deprived, backward-thinking southern suburb in Oklahoma as a single mom was a lot for our family to bear. However, rather than be beat down in the ground by it, we used the challenge to strengthen the bonds of love that we have for each other, and compassion that we have for the underserved. As an adult, it has made me really appreciate those bitchy women whose lives consist of battling burned out educators in countless IEP meetings, to bitchy women who know more about their son than Carter has little liver pills. Those women are warriors for their children, the real life mother bears. It is because of them that their children enjoy decent quality of life.

One thing I know for sure, is that mothers are the experts. This is not to say that I do not have a special place in my heart for daddies too, but I am talking about my mom and the moms I know right now. My mother is the bona fide expert on all things Josh related. She has read about, seen it, or tried it. She will do anything to make sure her baby has a good quality of life.

Josh is a medical miracle because my mom fought so hard for him. We’re talking risking reputation, being blacklisted by dumbass Oklahoma neurologists, losing friends, etc. Josh is 21 years old, and still the oldest living child with his disability because mom refused to accept anything but the best standard of care for her child.

As an adult, Josh has become increasingly social. He’s not going to pontificate about the Bush administration with his coffee clatch, but he is at his best when he is around a group of his peers. He likes other kids, he likes going out, being played with, and being affectionate. He is emotionally communicative. He is empathetic beyond his developmental range.

One of the reasons he is still alive is because my mother has had to force feed him due to the nature of his disability. Because he has become so social, and he is aging out of the school system, my mom and dad have been frantically searching for a placement for him. They would keep him at home forever, to the detriment of their own health, except that Josh doesn’t really want to be there anymore. He wants to be with other kids.

They interviewed at this place that Josh really loved. Out of sheer fate or luck, Josh was accepted. My family began transitioning him over to the new facility. Last weekend, my mom showed up to demonstrate how to feed him. It probably looked like force-feeding, and it is. It keeps him alive. He has never choked, although he has been a pain in the ass about it more than once, to be sure.

One of the aids saw my mom feeding him, like she had been for the past 21 years, and reported the case to the Oklahoma Health Department. They passed down a ruling saying that Josh must have a feeding tube inserted in his abdomen, otherwise, he would be denied admission to not just this facility, but ANY facility in the state. I am Josh’s third guardian, and Russ and I talked about what our options were. Basically, if we take him to New York, the problem of force-feeding liability will come up here too. So, my mom is in a bind. Either she sacrifices her own health, family, and marriage for Josh’s physical health, and Josh suffers socio/emotionally, or she puts him at risk for complications as a result of this procedure. Here is what my mom wrote to me in an e-mail.

“Jessica,
Thanks for the support. I'm praying too. For the first time in a long time, I really DON'T KNOW what to do. Your Dad is checking to see if there are any less invasive procedures that would accomplish the same ends. One of the GI Docs told him about one way valve, flush with the skin, that can be inserted by an interventional radiologist under local and a little IV sedation. My biggest concern is whether or not Josh will leave it alone after the fact. He potentially could do more harm to himself than the surgery by simply screwing with the site non-stop.
Bottom line this one is going to have to have Divine Intervention-I am flat out -out of ideas. Please just pray. I really love you and your brothers, and I've made many mistakes in parenting just like most parents. However, I hope that at least most decisions I've made I really did try to weigh all the factors and consequences for all of us involved. I will take at least that much deliberating over any decision that involves Josh's future. The primary problems are that 1) Josh's needs have changed in the last ten years from health priorities to social/emotional priorities. 2) Ther is no template for Josh, and right now I feel like we are all being punished for both his survival and his progressive development. The latter issues, although I feel extremely passionately about, the rest of the world has no understanding. They feel really evolved because not only are they not openly repulsed by the handicapped, they have actually agreed to care for them. Hence, most tend to feel very self righteous in setting THEIR ideas of what is acceptable for this underserved population. For those of us parents that can cause incredibly conflictng feelings. First they are throwing you and your child a lifeline,however, you can only grab it under their conditions and decisions of what is BEST and SAFEST for YOUR child. THe fact that you successfully reared this sick child is given no credence. Thier liability issues are paramount.
Thanks again for the support and thanks for letting me ventilate my unrelenting frustration .
Love, Mom”

If only every mom could express herself so eloquently, we would all be in better shape.