Attention Huddled Masses

I have been in a funk all week. Truth be told, there are days this life gets old. This year it hits in Holy Week. Fitting, I suppose.  We can only hope Easter week brings relief.

I wish I could explain the funk, but I can't. It's likely a combination of things. Maggie was off school last week and every vacation is just a little more difficult for me. Planning every minute of the day around Maggie's needs is physically, mentally and emotionally taxing. By the end of the week I am completely exhausted from the increased amount of lifting and maneuvering I have to do. In addition to that I have attended a couple of legal seminars on special needs trusts and meeting the needs of the special needs population - especially as they age. It made me very sad and very very tired.

Things will only get more difficult. Services are minimal and additional massive cuts in services are coming. One speaker I heard today warned that the services for the developmental disabled population could well go the way of mental health services in California. Mental health services in California used to be "okay" and today they are abysmal. In many counties they are non existent.  According to this guy, the California model of services for the Developmentally Disabled is the best in the country and we want to preserve it. (note: I take serious issue with the model living up to the reality these days.)  It was depressing to hear.

Of course there is always hope. One woman spoke of quality of life, a phrase that makes me shudder in the medical world, but one which is so important in the social services arena. She said for most of us the quality of our life is not measured by three meals and a bath and neither should that be sufficient for the disabled population. A quiet voice in the wind that must rise to a chorus.

I had to hurry home from that seminar because I had arranged for a Canadian doctor to come her and learn about how we handle everything. As if on cue I fielded a couple of phone calls regarding small Maggie issues while she was here. Despite the interruptions, this visit also gave me hope. She is specializing in the care of developmentally disabled adults. WOW! This is cutting edge stuff. I'm not sure such a thing even exists here. If this bright young woman is willing to devote her career to this, others will follow.

My family, and I'll bet the families of most of the people reading this, are somewhere in the middle of the pack. We are the middle class, some upper middle, some lower middle, but all middle. The extremes define the middle. One extreme is the rich and powerful, the other is the weak and vulnerable. Everybody is mad at the rich and powerful because they push the middle down. Why don't we all celebrate and protect the weak and vulnerable. They push the middle up. We will all look and feel better.

Somehow, someway, we all have to make people understand that the Maggie's of this world are not only a part of society and a part that needs to be protected and served, but a part that needs to be revered and honored. Then we have to convince the lawmakers of the same things, and they have to allocate the resources to make that happen. Or we have to find resources elsewhere.

We will all benefit.

The Pen is Mightier than the Sword

Okay, it is a keyboard rather than a pen and I rarely use a sword so I do not have comparison data. Nonetheless, I can attest to the power of the written word. Ok, the walls of Jericho didn’t come a tumblin’ down, but it is a coup.
UCSF, like any ginormous institution, is a hierarchy of interconnected corporate departments. While the medical care is delivered in an efficient manner, the behind the scenes work of keeping the medical center operating, compliant with laws and efficient takes an army of people. Of course, changing anything or getting anything accomplished means endless meetings and justifications. Unless you get to the right people first. Two of my blog posts Maggie World: Access this! (January 9) and Maggie World: Friends in Tight Spaces (july 29) [not sure if these links are working] made their way to the right person who in turn sent them to the department heads who can make a difference. It was those department heads who came to the meeting last night. These are three corporate bigwigs wanting to hear the issues first hand.
In the beginning of the meeting, we introduced ourselves and explained our role on the council. There are both family members and staff on this council. The family members have children with a variety of issues, from the occasional hospitalization to the chronic and ongoing issues to those whose children have passed away. It is sobering for anyone to sit at the table and listen to our collective experiences. By happenstance, I was seated next to the biggest of the three wigs and was the last to introduce myself. I told them that Maggie was a frequent flyer, she had undergone more than 70 surgeries, had hundreds of admissions, and then said, and I may be the reason all of you are here tonight. I joked that I have had many wonderful experiences at UCSF too, and I have even written about those, but the bad ones make the rounds.
They listened with interest and concern to the stories several parents shared about difficulties with both access and attitude toward our kids in wheelchairs. One gave somewhat corporate answers initially, (a reflex, undoubtedly) but when called on that, started dealing with the parents on a more human level. When she spoke of the general decline in service in the world, she was reminded this is a HOSPITAL, not Exxon. People arrive at a hospital in a heightened state of emotion and the non-medical staff needs to be cognizant of that and of their role in either exacerbating or easing those emotions.
Of course, we heard of the difficulty in finding the space necessary to make everything accessible, and I completely understand that. In my own home, I have to climb over furniture to get around Maggie’s wheelchair half the time. My thought, and that of many other members of the council, is to work on the attitude of the employees while the physical/structural issues are being addressed. Can you teach manners and etiquette to adults who did not learn it from their parents? Maybe and maybe not; but they can be held accountable for job performance. Interpersonal skills should count in a service-based organization. If they did not learn them as a kid, they better learn them now, or suffer the consequences of not meeting job requirements.
Because if they don’t that one crazy lady with the blog will just write about it again. But, if writing about the bad experiences helps make changes, or even get the right people talking about it the experiences are almost worth it.
Almost.

History

Maggie apparently has some fans. Yay! And there has been a request from two of the coolest fans, eight-year-old twin girls. They want to know more about Maggie’s past and how she learned some of the things she knows. I am flattered and delighted to try to answer these or any other (appropriate) questions.

But I have a confession. I am not sure how Maggie learned to do some of the things she does. She is a smart girl, that is for sure. I am going to post stories from the past occasionally. Maybe we can figure it our together. The best place to start is the beginning.

Maggie’s incredible medical journey began when she was developing as a fetus. The best estimation is somewhere between 6-8 weeks into my pregnancy, something went awry. It’s not anyone’s fault. Sometimes that is how nature works. Because that is so early in the pregnancy, there are some very central things developing; and I mean that literally – the center of your body is forming. Almost everything that is different about Maggie is right in the center of her body.

Of course, we had no idea this was happening. From the outside, everything seemed fine. I went to the doctor regularly, took care of myself and did all the tests. The tests showed everything was fine and that we could expect a healthy baby girl. Obviously, the tests were wrong. That was fifteen years ago and the tests only went so far. I do not know if the issues Maggie had show up on tests today or not. We were very excited to learn we were having a girl. (After two boys, we were looking forward to a change.) I am glad we learned that early and celebrated it. There wasn’t much to celebrate the day she was born.

Our first indication of a problem was about an hour after Maggie was born. She was about 4 weeks early, so the delivery room was full of doctors and nurses. However, that did not worry us; her older brother was also born a bit early. We knew the drill. Or so we thought. They took the baby away to the NICU, checked her out, cleaned her up and brought her back. But they didn’t come back. Instead the doctor showed up at the door and said simply:

“I have to talk to you about your baby.”

We knew right then that things were not going according to plan. I will never forget that moment if I live to be 1000 years old. That was the moment we knew; our lives had changed forever. We were frightened ,worried and very sad.

However, we did not know then that while Maggie would face unbelievable challenges, the changes she would bring to our lives were just that: changes. Some were bad, some were good; and all of them have been an adventure.

Maggie was born on March 3rd and had to stay in the hospital until May 21. Those 11 weeks in the Neonatal Intensive Care Unit (NICU) were our first introduction into our new world. We saw unbelievable things, both good and bad. Over those weeks I learned when and what to question and what to accept. The nurses helped me trust my maternal instinct and encouraged me to speak my mind. I’ll bet they regretted that.

Once I found my voice, I never shut up.