Welcome to adulthood. Now go away.

Several things have happened over the past months that I have not addressed because they were too raw or too unbelievable. I wanted to think they were isolated incidents; or perhaps examples of extreme bad manners or lack of sensitivity or respect on the part of individuals. But they were not. 

I have to face facts. Maggie is a problem to the system and the system does not mind letting me know that.

This was summed up best by an inelegant presentation I went to regarding transitioning care from the pediatric service to adult care. Obviously this is an issue that interests me as Maggie approaches her 18^th birthday. The individual was speaking to a group of parents – and he KNEW he was speaking to a group of parents. As he started his presentation he spoke of the disjointed way transition issues are handled now and noted:

“It’s problematic because these children are living longer.”  

My head snapped up. I had been looking at his handout and thought I heard him wrong. Another mom at the table quickly called him on the remark. She said, “it is NOT problematic, it is wonderful and amazing and you are talking about OUR children.” He was unfazed by the correction.  

Bending as far as I can to give him the benefit of the doubt, I believe he was trying to say there is nothing formal in place because medical advances outpace the infrastructure and patients (like Maggie) survive today where they didn’t even 10 years ago.  With that extremely generous interpretation I have to agree with him. But I also believe he spoke the truth. It is problematic for the system that these children survive and the fact that a representative would say that to a group of parent demonstrates the callousness of the system.

I spoke up from my end of the table because my daughter is the oldest and perhaps most complicated (or in the eyes of the system “most expensive and most problematic”). I told the group that I have witnessed the shift first hand. While doctors used to marvel at Maggie’s history and her charm and intelligence, I now get lectures about quality of life*, and not in a good way.  

In denying to undertake a surgical procedure* that Maggie needs, the surgeon said to me,  

                “you didn’t expect her to live forever, did you?”  

Well, no, I suppose I didn’t, but (demanding parent that I am) I do expect her to be given every chance to live as long as she can. 

Maggie has become a burden to the very institution that saved her life over and over and over again. Medical technology and advance have been able to save the lives of these children, but cannot make them function as others do. Still, Maggie functions very well.  She is living the life they saved. Instead of patting themselves on the back as they should, the system is turning its back on her. Talk about problematic. 

To say this makes me sad is a wild understatement.

*The concept of “Quality of life” deserves it own post and not ALL doctors or institutions feel this way. My amazing pediatrician does not and arranged a second opinion. Maggie is having surgery next Friday. More about that to follow as well. 

Frugal Pioneer

I know there are many who feel the cost of caring for the disabled is too high. Most of those are too polite to tell me their position, but there are always a few who let me know. Fortunately I'm (usually) too polite to tell them what I think of them.

So it all works out

I have to admit I had some hesitation about talking to a reporter doing a story on the financial aspects of raising a child like Maggie. When Rob Reuteman, the author of the piece contacted me I asked him specifically if this was going to be a "these kids aren't worth the money" piece. If it was, I didn't want to be part of it. He quickly assured me that was not the case and I found his story to be realistic without being alarmist. (check out the story here)
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As we march into the abyss of inevitable budget cuts in California, I will not justify the government's support of Maggie and her peers. It is the responsibility of a decent government to care for its most vulnerable citizens. Besides, I know two things to be true: 1)We are saving the state a ton of money and 2) Maggie is a pioneer and deserves the government support.

The care Maggie is getting here, though costly, is far far far less expensive than it would be if she were living in a facility. She would have all the same costs PLUS lodging. Also, we can deal with things like her current pneumonia at home instead of in the hospital. One week in the hospital is about two months worth of in home care. In all of last year Maggie spent three days in the hospital, compared to weeks and weeks in other years. It is not that Maggie is healthier than in previous years, because she is not. It is because we can catch things early before they get out of hand and because the doctors know she will be well cared for at home and the we have everything we need.

Maggie is absolutely a pioneer and she benefits from the pioneers who came before her. The American government has always supported pioneers. We're not looking for a land grant, just the ability to live the life the medical advances saved. Medical technology and practice is improving every day. Medical advances are much faster than the social infrastructure. They can save people, but society doesn't have ability properly care for them. Society fumbles along to create the services that weren't there. By the time they are in place there is another level of care necessary. Maggie is in that "next level."  But she's not the last. I have my daughter today because a mother a generation lost her daughters and the medical world figured out how to change that. Maggie is living the life she is so that a little girl a generation form now won't have to because medical advances will continue.

There is no question that caring for Maggie and others is expensive. Is it worth it? Yes, I think so but admittedly I'm biased. She's my daughter.

 Let me ask you this. Is your daughter worth it?