Ahead of the curve

Maggie, like many of her disabled peers, is ahead of the curve in so many ways.  She is the product of advanced medicine, alive and thriving in a world that doesn't have an infrastructure in place to deal with her needs.  She is a survivor and lives in a world that is not set up for her.

 This is not limited to disabled children, either. Kids with various health care needs are surviving longer. They may need assistance but there is nothing in place because they are the first generation to survive. There is not sufficient infrastructure for any members of society who depend upon the net of social services, but for these first generation survivors, it is really up to the families to get things set up. And families are tired because they are already completely overtaxed.

I do believe that the state and federal government WANT to help, but it chokes on its own bureaucracy. Things are pieced together from this program and that program. If you shove a round peg into a square hole, there will always be gaps.  Change happens, but on a glacial timetable. (Wait, even the glacial timetable is faster now that the polar ice caps are melting so quickly.) The piecemeal approach and the delays in addressing the reality of the populations these programs serve have drastic effects on many many lives.

On Sunday I had the pleasure of sharing the story of Maggie and how we make it all work. I went to Jack's Camp a weekend camp for families who have a child with a brain tumor, or deal with the after effects of the brain tumor, even if those are none. Check out Jack's Camp, it's one of two family camps in California sponsored by We-Can, a non profit organization  was founded by a couple of MOMS to address a need that was not being met for survivors of brain tumors.  This is all funded by the Taylor Family Foundation.

The families at camp can socialize and exchange information with other families who "get it".  I participated in a large group discussion at the Camp and a lot of the discussion involved the ways the system doesn't address the kids who have brain damage and lingering effects of surviving a brain tumor. Maggie has never had a brain tumor, but as I told them, we were simply in different cars on the same road. It was the same story I hear with parents of kids with disabilities from any number of causes.

One mom pointed out she was "lucky" that her daughter was diagnosed with cerebral palsy because that opened doors to programs that her daughter would not have been able to access with only a brain tumor.

Reread that last sentence. Does that make sense to you? Of course not. If there is a child in need of services, and the services are available -- which they ARE -- why on earth would one cause be covered and another not.

Before anyone out there pounds their fist and screeches about too much government, I am not saying that we necessarily need more services, but they must be available to the children who need them. And under the antiquated service delivery system in place they are not getting there. The system doesn't recognize the Maggie's of the world or the disabled survivors of childhood brain tumors because they simply weren't part of the world when the system was set up. But they are here and part of every community.

We Can, and the Taylor Family Foundation are doing great work, but they cannot do it all. With an efficient system delivery service at the government level, organizations like these could get so much more done.



It is time to streamline and upgrade. Governmental agencies need to stop protecting what they conceive to be their territory and make sure the services get to the people who need them.  I am certain that services could be delivered in a more efficient and cost effective way and help more people.  And isn't that why they are in place.



Just don't make the families do it all. We have been pioneering for years and we are really really tired of the hardscrabble life on the Prairie.

Spidermom

"Will you walk into my parlor?" said the Spider to the Fly, 

                                                        (The Spider and The Fly 1929 Mary Howitt)

Maggie's complicated set of services and benefits is intricate and interdependent. In fact it is often referred to as a "web," which describes it perfectly.

Theoretically the web catches all the needs and issues. There are holes, of course but the strength of the web prevents anything from slipping through. Again, that is the theory, practical application varies tremendously. 

Part of the problem is that none of these strands see the entire web and none realize (or care) how crucial their role is to the whole picture. As long as they are doing their part it doesn't matter whether or not they understand the entire picture. But when one part fails it matters tremendously. Someone has to keep the web intact and in Maggie's life, that someone is me.

Generally the web works pretty well; but it is only as strong as the weakest strand. If one thing fails the entire web is compromised. Recently, a strand we never had to worry about weakened and now the holes in the web are gaping. Lately things look more like this.

I have been spinning new webs as fast as my eight spidermom arms can work, and supposedly things are will be back in place today, but it has been difficult. Maggie has been going without things she really needs, including some medications. The medications too are a web of protection for Maggie. It took years to find the right combination of things to keep her healthy. Now there are holes in that web too. We have to just wait and see if she gets sick from the gap.  

This old spider will not be happy if that happens. 

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 Great $tate of California

Tonight our recycled Governor Jerry Brown will deliver his State of the State address for California. I like Jerry Brown and I hope he can return this great state to its prior glory. But I need to give Governor Brown a few last minute pointers before the big speech.

Californians understand there will be more cuts. Pundits indicate most people are in favor of those cuts. I suggest, however, that both the pontificating pundits and the plurality of people will not be as adversely effected by the anticipated cuts as the disabled citizens of California.

Governor Brown, we already know: it's a mess. We all hope you can do something to fix it and all Californians know that we will have to tighten our collective belts and do more with less. I just ask you to remember those who are unable to tighten their own belts because of physical, mental or intellectual disabilities.

Those who cannot do for themselves need people to help them. They need services and care and places to live and food to eat. they need access to medical care and doctors who will accept them as patients. Those who cannot do for themselves will feel the cuts so much more profoundly than their fellow Californians. This is true not only because they need the services more, but also because the services are not providing anything more than basic human needs.

Most Californians will pay more in bridge tolls and gasoline tax as they drive themselves to work, but they won't be left behind.  They will suffer the closure of State Parks and endure longer lines at the DMV. College students will go further into debt as they prepare for a future that is pushed a little farther back because they cannot get the classes they need. None of these are acceptable, but we understand many are necessary. It is a high price to pay to fix things, but most stand at the ready, prepared to do their part.

The disabled citizens of California will suffer those same issues and so much more. Some will be left homeless or be forced into institutions, others will die for lack of care and services. That price it too high.

I ask, then, Governor Brown, that you consider very strongly the cuts that are terribly inconvenient for everyone and differentiate them from the cuts that can ruin or kill a select group of the citizenry.The disabled are for the most part, unable to turn anywhere else for assistance. They will be the responsibility of the State of California in one form or another. Consider the big picture, what state costs are being saved and what are being increased. Institutional care comes at a very high price and that price will be borne by the State.  Protect the basic services that the disabled rely on to survive.

Splashdown!

have returned to earth after yesterday’s trip into orbit. The reimbursement check was ready this morning and I went straight to the bank and waited for the teller I know best and she agreed the funds would be available tomorrow so I can pay the nurses. Often times, because the reimbursement amount is significant, the bank holds the check for several days. I have been assured that sufficient funds will clear so that I can make payroll tomorrow. I am relieved, but still fuming. I do not like to be reminded how close we live to the edge.

Maggie’s health remains in question. She made it “all day” at school today. (Note: The summer school ends at noon.) I did get two calls from the nurse because of different things coming out of various tubes. Individually none of them is particularly bad news; collectively, however, they demonstrate Maggie is likely fighting off a bug. I hope that she can make it the last couple of days at summer school. We then have. about five weeks to get her tuned up and back to fighting form.

During the school break, we are trying to schedule a couple of exams under anesthesia. Actually, it would be two exams, by two different specialists, but one anesthesia. That is better for Maggie, but it is difficult to schedule two very busy pediatric specialists for the same day. It will happen, though. Once they look around her lungs and her gut, we may have a better idea why certain symptoms keep happening as they do. If nothing else, it will give Maggie something to write about for her “What I did on my summer vacation” essay.

I need to finish a project because I’m not sure how I will be able to work once she gets out of school. I have been reviewing and gathering ideas for a couple of weeks . I waanted to work on it all week, but yesterday was lost. I really hope there's no more drama with her services because I can't afford to waste any more time.

I have to power through. Maggie better cooperate and stay healthy for the next 72 hours!

Can I count on your vote?

Today is election day in California. There are several propositions on the ballot dealing with California’s budget problems. They amount to rearranging the deck chairs on the Titanic. This state spends far more than it takes in. That means something has to change, but the two sides are polarized. Political stonewalling prevents both the necessary cuts to services to reduce spending and raising the necessary taxes to increase revenue. As a result, nothing is done. Nothing. And we keep circling the drain.

According to the polls, these propositions are going to lose. The only one with a chance would prevent the lawmakers from receiving a paycheck when they fail to pass a budget. It’s like the voters are saying: “Hey, you work for us. If you don’t do your job, you don’t get paid.”

The Governator loves to send things to the voters, which in principle is a good idea; but these propositions, like his first attempt, are badly drafted and have far reaching, un-doable effects. And, what’s more, they won’t solve any of the problems. Mr. Schwarzenegger is a smart guy and an astute businessman. He should stop using his Hollywood charm to gloss over important issues and treat the people of California as intelligent voters who are worried about the future of schools, police, fire fighters, state workers and innumerable programs for those in need, particularly the disabled.

When these propositions go down, there will be serious and significant cuts to services all over the state. Frankly, even if the propositions pass the cuts will come. I am very concerned about the nursing Maggie receives. I don’t think they will cut the number of hours to which Maggie is entitled, but they will definitely cut the reimbursement rate – again. This will impact my ability to find nurses willing to accept the lower amount. I have warned the nurses here that there may be cuts and I’m hopeful they will stick around.

Yesterday a local school board membe rsaid she’s going to vote against them even though there will be drastic cuts to schools in San Francisco and throughout California. It’s time for real reform and this band-aid won’t really help. She said if we have to go over the cliff to get real reform than that’s what we have to do. I understand that sentiment and think it has some validity; but that’s easy to say. She won’t be the one going over the cliff and neither will I.

It will be the weakest among us. It will be Maggie and her peers, especially those without families who can support them. It will be children in foster care without families to protect them. It will be the mentally ill who have nowhere to turn for help. It will be teachers, librarians, and other state workers who lose jobs. It will be homeowners whose houses burn because there aren’t enough fire fighters. And, it will be kids who don’t have sports or music or shop classes in school. They are the ones who will be lying in a heap at the bottom of the cliff.

I better go vote. If only I knew what to do.

Your Tax Dollars at Work

As Maggie’s favorite fictional character Junie B. Jones would say, “I have frustration in me”

Today was the annual meeting with the social worker from the Regional Center. This meeting always happens right around the birthday of the client, which for Maggie was two days ago. Hmmm. Maybe that is why her birthday is often so melancholy. I know what’s coming.
The Regional Center is a private agency that contracts with the State of California to provide state services to the developmentally disabled, like Maggie and thousands of other Californians. They are the gatekeeper of sorts when it comes to services. They can open that door and get what a client needs or stand there shooing folks away. There are many of them in various regions of California (hence the clever name). Ours is the Golden Gate Regional center, which is, by reputation, better than many.

California, like many places, is really screwed up financially. We may actually take the cake in that department; because, in addition to the financial crunch being felt across the country, California has an inept and ineffectual state government that spends more time deadlocked over issues than anything else. I think about five legislators are really running the entire state. And they are doing that with smoke and mirrors. Reimbursement for nursing is being cut 3%, which is tolerable, but there is an indication of more cuts to come, which is not.

The annual meeting is designed to determine what needs the client has and what will be done to meet those needs. The social workers are stretched beyond capacity and generally cut and paste reports from previous years to get the paperwork done and signed as quickly as possible. It doesn’t have to be right, just complete. They comply with the letter of the law, but no one -- and I mean NO ONE -- is paying attention to the spirit.

The documents were already filled in and I was just supposed to sign them indicating everything is peachy keen and working perfectly.

Except it is not.

And I didn’t.

The poor woman was somewhat flummoxed. She was very nice and understood my concern. She wanted me to sign it anyway and PROMISED to change it when she got back to the office.

Sorry. No can do.

She will email it to me for review before I sign. That is better. Nevertheless, the documentation itself is all so silly.

I feel strongly that documentation should be correct, especially as Maggie approaches adulthood. I understand the budget constraints. I understand that not everything will be fixed. Concerns should be documented even if they cannot be addressed by the system. Seems logical enough. Bzzzzzzzzzz, wrong. For example, there is a section called “unmet needs.” That would seem to be the perfect place to list needs a client has that are not being addressed. But no, that would be logical and therefore BZZZZZ.Wrong again. You just cannot do that.

You can only use the unmet needs section to address to needs that the state is already capable of addressing. If there are needs outside of the current array of services, they are not “needs” as defined by the state.

I’m sorry…what? That means there are no “needs” outside of the system. And we all know that the system is absolutely perfect and operates like a well-oiled machine.

Pssst…..your well-oiled machine is leaking. Sproinggggggg.

I mentioned thatI was interviewed by a website. The brief interview ran this morning. It's probably nothing you don't already know if you read this blog regularly, but if you're interested, check it out.

http://www.5minutesforspecialneeds.com/878/878/

have a good Sunday everyone.

Field trips and plugs

Today is another field trip for Maggie’s class. They are heading to Chinatown to shop in the outdoor bazaar and then have lunch in one of the restaurants. Maggie will not be able to eat the food; she cannot take anything by mouth everything is through the tube. You might think this is sad for her, but it is not. Maggie loves going into restaurants. The hustle and bustle, and the noise are hugely entertaining. If, by chance, someone drops something: BONUS! Maggie will jump at the loud noise, wait a moment to process it and then start laughing.

It is a good thing she likes restaurants because the class may have to spend most of their day inside. It is raining pretty hard right now, so the outdoor bazaar may be a bust. Too bad, I think Maggie was planning to shop for my birthday present there. I am not sure if I can survive the day without one of the cool drums to ward off evil spirits from last year.

This is the end of the Chinese New Year celebration that started two weeks ago. The big parade is tomorrow night. We may go for a little while if it is not raining. The problem is the firecrackers. Those will freak Maggie out. Some sounds are good, other are not. I cannot explain it, but I can predict it.

Picture a little baby startling at the slightest noise. That is Maggie, and many other kids with cerebral palsy. It is just a reflex that many of us outgrow, but some do not. I think part of it is the time to process the noise. Firecrackers are too rapid fire; there is no time in between to decide if this noise is ok or not. Maggie also likely takes her cues from the reactions of others and if folks are wincing and covering their ears, she will freak out a little. If, on the other hand, everyone looks surprised and happy, she will laugh. She wants to please, but if it really startles her, she gets very frightened and cries. Then it is hard to calm her down. That is no good.

I plan to head to Chinatown to join the class later. The teacher always invites me along on field trips and I go when I can. Today is my birthday, so I can do anything I want. I think I will walk in the rain with Maggie and her classmates. The hubby works downtown not too far from Chinatown. He may walk over and join us for lunch too. We will turn a rainy Friday into a celebration.

Other news: Two plugs

I was interviewed recently by a website entitled 5 Minutes for Special Needs. (www.5minutesforspecialneeds.com) the interview runs on Sunday Feb 8th. Check it out. I did not know about this website until they contacted me, but I have visited a lot since then. Several parents facing challenges like mine author the website. There is a lot of good information and insight over there.

Tomorrow night is the 60th Anniversary Gala for the Blind Babies Foundation. This wonderful organization helped Maggie and me in her early years. It will always have a special place in my heart. The local news did a story on it the other night, which is here http://abclocal.go.com/kgo/story?section=news/assignment_7&id=6639850
Check it out. The woman in the video is Jeri Hart. She was Maggie’s home counselor too. She was the very first person in Maggie’s life who looked at Maggie for what she could DO instead of what she could not. Jeri instilled this attitude in me. Maggie can do anything she wants.
I am eternally thankful for that.

Have a good weekend all.

Thankful

This is the week we set aside to give thanks. I like to think I give thanks regularly, but it is good to have this designated time to reflect and remember all that we have to be thankful for.

I am thankful for many things. My family, immediate and extended, is something I am particularly grateful for. These people are a source of support and love for me. My life is centered around them and I have a great life because of them.

I had occasion to see many of the extended - extended family this weekend, cousins and their families, and I am grateful for the connection to so many people. As you get older, relationship with cousins takes a back seat to keeping up with siblings and nieces and nephews. In my family, it has to or the sheer number of people would overwhelm us all. There were 31 cousins in my generation and I cannot even tell you how many there are in the next generation or the one that is coming up behind that. We do not see each other often, other than chance meetings on the street. People talk about only seeing relatives at weddings and funerals. However, this family is so huge; we cannot include everyone at weddings, so it is mostly funerals.

This weekend it was Bobby, my cousin’s son, who died so suddenly last week. The services were lovely; the right blend of celebration of his life and sadness at his passing. And the place was packed, there were hundreds of people there. Bobby touched so many people in his short life; and he lived his life with a passion and exuberance that was contagious. His fiancé, parents, siblings, aunts, uncles, and cousins were devastated by losing him. But I think they were lifted up, a little bit, from the outpouring of affection for him, and the appreciation of his well lived life.

I participated in the services, as did many of my siblings and other cousins. I felt very close to all of them, even as I tried to keep the appropriate distance from those closest to Bobby to let them grieve together as his immediate family. Bobby’s grandparents all predeceased him, so my mom and her brother and sister represented that generation. The three of them walked out of the church arm in arm giving great respect to their late sister’s grandson. It was lovely to see, even though the occasion was sad. There were many bittersweet moments like that.

At a couple of points, I felt out of time, as though we were all little kids in Grandpa’s house on Christmas Eve over 40 years ago. (I’m not saying this makes sense and I cannot explain the gray hair or all these extraneous kids.) I knew, even with all the time that has passed, and the huge responsibilities we all have every single day, that these people are family and will support me if something happens to Maggie. And that is just “my side” of the family. Steve’s family is just the same, and there are a lot them too.

I do not want anything to happen to Maggie and I hope it will not. However, we live on a precipice. And losing a member of the family, especially Bobby, cannot help but raise fears. I can tell you this; it is powerful to know there are so many people out there who will stand beside me in time of crises.

I am thankful for my family..

Re-defining Special

Maggie is in special education. That term, "special ed", evokes different responses from people. There are still those who giggle, or tease; there are those who resent everything about it, finding it unnecessary and expensive; and there are those who cannot imagine life without it. As you may have guessed, I fall into the latter group.

Special ed is a relatively new concept. Before 1975, when congress passed the Education for Handicapped Children Act, kids with special needs either stayed home from school or were institutionalized. I graduated from high school in 1974. I would have been excluded from school if I had special needs.

Special ed is an ever-evolving concept. It changes and refines every year. It includes the most physically disabled, like Maggie, and the child who appears perfectly fine but cannot learn in the way most children do. It takes place in almost every school in special day classes and regular classes. It is not perfect but any means, but neither is typical education. It will take a few more generations to get rid of the bias and the concept of funds being “deviated” from regular ed. It will arrive in full when it is no longer considered “special education”, but just education. But that is a long way off.

The evolution of special ed and the services many children need was and is accomplished mainly through the outrage of parents and educators. Maggie’s state of the art program in San Francisco Unified exists because of parents, and mostly mothers, who could not get what their children needed 10 or 15 years earlier and made noise about it. My hat is off to them. And I hope I am doing my part for those kids who will follow Maggie.

One of those women is my cousin Mickey. Her oldest son Bobby was born in 1976 and had special needs. Mickey, as a mother and a teacher herself, kept fighting to get him what he needed. Because she is such a lovely person, she fought with the system rather than against it and made friends instead of enemies along the way. She relocated to an area that was more beneficial to Bobby’s education. And Bobby flourished. When I say flourished, I mean as a person, not as a person with special needs. Because of his mom and her ability to get his needs met, Bobby finished school, got a job and lived independently. He met a girl, fell in love and asked her to marry him.

He grabbed the brass ring.

What more do any of us want for our kids?

Bobby died last Friday at 32 years of age. I don’t know as I write this what took him, but I know he died in his own apartment watching ESPN, something he loved to do. The world is quieter and a lot less jovial now. Bobby was larger than life, in every respect. His personality was huge and filled every room he entered. He was the life of every party and every gathering. I will miss him and so will everyone who ever met him.

Thanks Bobby, and thanks to your mom Mickey, for making “special” so special.

night shift anyone?

I need to fill three night shifts for Maggie. Night shifts are generally not easy to fill. For some reason, people like to sleep at night. Maggie has had the same nurse five nights a week for many many years. Now it looks like she is going to take another assignment for three of those five nights. It’s not just finding someone, which is difficult enough; it’s also dealing with the loss of a reliable fixture in Maggie’s care.

Up until about a month ago, an agency provided the nurses. They unceremoniously dropped Maggie and several other kids. The agencies cannot make any money on the amount the State of California pays for nursing care for the most vulnerable kids like Maggie. In reality, the State is saving thousands and thousands of dollars every year by not having to pay for institutional care. But that argument doesn’t sell. California is 77 days overdue passing its budget. Money is tight. Budgets are being slashed everywhere. Kids like Maggie, who cannot complain and do not have a voice in Sacramento, are easy targets.


Now we have to do this on our own. The State reimburses us, but only after we lay out thousands of dollars. In addition, the entire administrative responsibility falls to me. Now I have to find a nurse or nurses to fill three night shifts. Right now, we are the only family who has undertaken this task on our own. We are lucky to be in a position to set it up. Many families will not have the resources or tenacity and the children will suffer.

The nurses working here actually make more hourly than they did working for the agency. I don’t take a cut and can offer them a higher wage. However, I cannot offer any benefits and they are responsible for their own taxes. The agency does not provide any real benefits either, there’s no vacation or health insurance, but there are two paid holidays and dental insurance. They won’t get that from me, I am not an employer, just a vehicle for the money to pass through. The benefits are not that big of a deal the 25% increase in salary more than covers the difference.

In in the case of this nurse it is the responsibility for the taxes and her mistaken belief that her tax liability is greatly increased working here. It’s not, but it seems like it is. From a psychological standpoint, taking money you actually receive and putting it aside for taxes hurts a lot more than simply receiving a net amount after deductions. But I know I cannot take that on the responsibility of paying taxes for the nurses.

So one has jumped ship, or at least partially jumped. Arrgh. Ironically, she is going to be caring for someone I know. His name has not yet come up on the cut list but it will. It is just a matter of time before his hours are also cut. Kids all over the State are being affected, but they’re starting here in San Francisco. San Francisco is feeling it first because of additional fees that businesses have to pay in this city. When this boy’s name comes up in the next month or so, this nurse will likely want to come back. If there are open shifts I will take her in an instant, but I cannot wait for her. She knows that. She’s rolling the dice too.


Seems to me that home care for the most vulnerable and medically involved children should be given a little higher priority. It should be less of a game for the patients, the nurses and the families.


So if anyone out there wants to work 11PM to 7 AM three nights a week and can do all the skilled care Maggie needs all night long and be loving and caring, let me know. Perhaps we can work something out. There's no dental, but you can park in the driveway. In San Francisco that's a HUGE benefit.

Are you my mother?

Those of you already tuned in know that Maggie was diagnosed with both pneumonia and tracheitis last Friday. Both of those are serious and could easily land her in the hospital for a week or more. The earlier they’re caught and treated, the less likely she will have to go in the hospital. So, it makes sense to jump on this early, right? Saves resources, time, money and, most importantly, a lot of pain and suffering for Maggie.


Why, then, five days AFTER the diagnosis – which took the patience of a saint to obtain – is Maggie STILL WAITING for the prescription to be authorized? The drug is admittedly very expensive and the pharmacy won’t even order it until it’s authorized. I knew from experience that there would be a delay and tried to light a fire under everyone. That didn't do any good. It was Friday afternoon and you know what that means – wait until Monday.


Late Monday afternoon the pharmacy called to advise they could not get approval because the (inappropriately titled) “urgent care” doctors could not order this drug because they weren’t familiar with Maggie. No problem, I faxed her pediatrician who reordered the med. Nothing happened.

Tuesday – 5:00PM - I received another message, this time from CCS (the authorizing agency) directly, that they could not authorize this with simply a regular pediatrician, rather, the pediatric pulmonologist had to order it. COME ON! I left a message for the pulmonologist but it won’t happen until today at the earliest and THEN the pharmacy can order it. So a full week will go by before she even starts the medication. Because she also has pneumonia, there was also a broad antibiotic ordered, so she’s not in any obvious danger. But it is ridiculous. So much for jumping on things early.

Because Maggie has had pneumonia about 50 times in her life, I recognize the early signs and take action. The signs are not obvious to everyone, but they are to me. The doctors, who appear to be about 16 years old, were politely tolerating my concerns at first, and not very subtly communicating their doubts about my belief that she had pneumonia or tracheitis. It was the soothing voice saying, “there there *mom*, she seems to have resolved these issues” which you know, if you’ve spent any time in medical arenas, means they think you’re an overreacting meddling mother. And they call me mom – they call every pediatric patient’s parents “mom” or “dad.” It’s disconcerting, perhaps because I could easily BE their mother. “*Mom*, the chest xray is perfectly clear, nothing to worry about, and as soon as we get the initial read on the other test you can go.”

When the initial read was positive, the tone changed. “Wow, *mom*, you have good instincts. Oh, and radiology called back and the chest xray isn’t as clear as we thought. She does have pneumonia.” Inwardly I say: “Guess what Junior, I know and I knew six hours ago when I got here. And it’s not instinct, it’s experience. I have been doing this 24 hours a day since you were the smartest one in the 3rd grade. Oh, and by the way, I am NOT your mother. Outwardly, I just nod and say, “ok, what’s the plan.”


The plan was to start this great drug immediately. Wouldn't that have been nice.

Planning what?

We decided to take a short road trip. Just the three of us, Maggie, Steve and I. The boys are off to school so they're not invited. We have not taken Maggie anywhere overnight in at least two years. She's either been too sick or it's been too much trouble to organize. But this weekend is different. Maggie has been healthy - complicated, but healthy. It's time to give it a try.


These plans were made about a month ago, shortly after we learned that our nursing agency was abandoning Maggie as a patient. They gave us 30 days, which ends tomorrow. Hence, tonight is the last nursing shift. Since we weren't going to have nursing anyway and I was going to be up all night every night for the rest of my life, might as well go somewhere. I can miss out on sleep anywhere. Since then we have been working with golden Gate Regional Center to find another way to handle the nursing. Of course it means thousands of dollars and a ton of work for me, but at least I can sleep at night. We have nurses starting under the new system on Sunday. That still leaves 36 hours without nursing, so we planned the trip. We have learned to squeeze alot of entertainment into very short periods of time.


We're leaving at 6am tomorrow, when the night nurse leaves. Or at least we are supposed to. As if on cue, Maggie's having some trouble today and I believe I will be spending the day at UCSF Urgent care. I cold take her to the ER right now, but I know from expericnce that they will send us over to wait for urgent care to open. (Perhaps it should be - NOT THAT URGENT care. ) You may think I'm inattentive typing this while I'm on alert for a dash to the hospital. But I have learned. Thousands of days in the hospital have taught me when to observe and when to rush. Relax. We are in observation mode and I can see her from here. The osygen is on and she's improving, so this may be nothing - but I suspect she's developing pneumonia. Pneumonia is serious and Maggie has had it at least 50 times. At least. Every single time is scary, though.

You know the fear doesn't change. The experience of handling emergency after emergency teaches us how to handle a lot of things, and people often marvel at our ability to deal with these crises. We don't have a choice, so we do what we have to. Experience has also taught me that observation mode can change in a heartbeat. So we are always scared.


My antenna is up and plans for our mini vacation are up in the air. Maybe I'm wrong and we will go after all. Maybe I'm not and she'll be admitted. If that's the case I hope we at least get a room with a view.

Hope Springs Eternal

The nursing has been approved, which is great. I'm not really surprised, though, because of the complexity of Maggie's care. Once I gave them a list of her nursing needs, the approvial was very prompt. The challenge was supposed to lie in finding actual nurses to work. As luck will have it, it appears nurses are lining up to work with Maggie. I am so relieved -- but still a little afraid to believe it. As of this minute there are three out of fourteen shifts open. And there are several people interested. Now we just need to figure out how to organize this and get the money to pay the nurses for the first month.

I have heard various things abou thte nursing agency that dropped us. One thing is the agency is reluctant to accept patients in San Francisco because they have to pay so many fees. The mandatory health insurance and other fees are meant to help the little people, but if companies won't do business becasue of the requirements it is the little people who suffer. There are no easy answers to any of this.

Today we went down to the victory garden at San Francisco's Civic Center with Maggie. They used the reflecting pool in front of City Hall, filled it with beds of planted vegetables in beautiful arrangements. There was room to maneuver the wheelchair around the beds and Maggie loved it. Then we hit the SF Main Library. I think I've been in there once before. It is great and Maggie found it highly amusing. The automatic book return was the best. A nice woman let Maggie push her book into the return and it whooshed away. Hilarious, I tell you.

We are hopeful that this new arrangement will work out. But change is a little scary and there are a lot of changes right now.

Wednesday 8/13

Greetings. This is my first blog entry ever. I have to thank my friend Kurt for inspiring me to do this. He posted his blog address on his facebook and I knew I had to join in.Likely any readers of this know my daughter Maggie. She's 14 now and has severe disabilties and complex medical problems. The title and focus of this blog is to chronicle our lives dealing with Maggie and the issues involved in raising and living with her. Maggie is smart and funny, but dependent on others for every aspect of her life. Her care requirements are 24/7. Navigating the service agencies is difficult and time consuming. The current budget crises in California seems to be a tipping point, and services are being cut left and right. I'm not sure the budget issue is really a cause or simply provides an excuse to cut back. Personally I believe it's the latter, but I'm old and jaded. I look forward to hearing from anyone and making this blog as interactive as possible.