Monday, November 24, 2008


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 fiancĂ©, 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..

Friday, November 21, 2008

Sure, Maybe!

The Holidays are here. That means parties, activities, and gatherings of all types. We do more in the last six weeks of the year than we do in six months. What do you do when you cannot get it all done? Just say no, and sit home with a movie and a fire in the fireplace. (Oh, wait, those are not allowed here in Nor Cal right now, we have to wait for the rain). There are worse things.

In our case, getting it all done includes all the holiday hustle and bustle that everyone else has. But we have additional considerations and responsibilities before we can take part in any social activity.

If it is an adult event, and kids are not invited, our issues are like those of someone with small children needing a sitter, but a bit more complicated. We need to get a nurse. Lately this has not been a problem and our fingers remain crossed for the holidays. In addition, frequently we have to hire an assistant for the nurse, someone who can lift Maggie and help with the care. This is more of a wild card. If we were in an age group where our friends had small children, this would not be that big of a deal. But we’re not. Most of our friends have grown children and haven’t had to consider this for a long long time. In fact, they’ve never had to consider the added complexities.

Sometimes folks are hurt when we cannot join in a given activity. It is often difficult for people to understand that one or both of us cannot make a certain outing. Often one of us will go alone, something we are very comfortable doing. (It’s either that or no one ever goes out.) Though we are comfortable doing it, it does not make either of us happy.

If it’s something kids are invited to there are even more things to consider:
1) Is Maggie included? I mean really included? Let’s face it; she freaks many people out. I do not want to take her places where she’s not welcome.
2) If so, can she physically get into the place – is there access? Public places are accessible but private homes are not. If there is access, is it meaningful. Just because you can get a wheelchair into a place doesn’t mean you can maneuver once inside. Will we be off in a corner to keep out of the way? No thanks.
3) What about the activity itself? Can Maggie take part, even as an observer, without getting stressed out? Movies are out because of her visual impairment. She cannot see or cannot process the moving images and the volume and the dark would freak her out.
4) Is it too cold for her? She gets sick easily.
5) Is it too crowded? That is just stressful for both of us. In addition to the maneuverability issue, there is practicality. Does Maggie really want to stare at everyone’s butt? Probably not.
6) Will she have fun? If yes, then let’s go and we will figure out 1-5 later.
7) Is she healthy enough? It’s December, everyone is sick. Winter’s are the hardest time of year for her (and everyone) health wise, But if Maggie gets sick it often means the hospital, no a day or two in bed. If she’s not up to it, then 1-6 are immaterial.

So please understand. We are operating in a world with different rules. We are not dissing you. We want to be able to do what we want when we want to do it. However, we do not enjoy that privilege.

And here is the secret,

That’s ok.

Therefore, if we are invited to anything, our answer is “Sure...Maybe!” What that means is: If
all of the above pieces fall neatly into place, we would love to come. However, there is good chance they won’t.

And then we stay home with a movie and a fire in the fireplace.

So it’s all good.

Thursday, November 20, 2008

Taking Part

Maggie is fairly well known in the education and medical circles in San Francisco. I am not talking famous or anything, but her extensive disabilities and medical problems mean that we interact with many professionals in both worlds. Because we live right in the city close to the medical center and the universities, we are accessible to those professionals when we need them and occasionally when they need us. This week we were needed. And we take part whenever we can. It's important to pay back the people and systems who have helped us.

On Monday, I participated in a study through UCSF regarding the impact on families caring for disabled teenagers and plans for the future. This was part 3 of this study. It was interesting and thought provoking. Looking ahead is something I do very rarely and with great trepidation. I did realize, however, that my outlook has changed since Part 1 of the study eight months ago. Maggie’s health is far more stable now than it was then. My thoughts about the future are not as grim as they used to be. That is a good thing.

Tuesday I took part in the Family Advisory Council meeting at UCSF. We meet regularly, every month or two. They want family input on various issues, for the past year, it has been input the design of the new children’s hospital. We actually had impact on several things, and that felt good.

Wednesday we had a speech student from San Francisco State University. He had to interview a family dealing with AAC. (AAC is Assistive and Augmentative Communication – that is what Maggie’s communication device is, but there are many many different things that fit into this category.) Unlike the UCSF study, this focus was now, the present, not the future. He asked good questions that were difficult to answer. For example, does Maggie ever communicate her frustration at not being able to do what other kids do? The answer is easy, no. She does not communicate it, and in all honesty, I do not believe she feels frustration.

But now it’s in my head.

Those of you who know Maggie know that she is a very happy kid. I may be delusional, but she is happy with her life, at least when she is at home and not in the hospital. Remember, this is the only life she has known. I think she views her situation differently than we do. We are projecting our own fears and desires onto her but she does not share those. In fact, I from her viewpoint that is not a wheelchair, but a throne and she is the queen. We are but the subjects here to do her bidding.
But now I have to wonder.
Damn college kid, making me think.

Tuesday, November 18, 2008

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.

Monday, November 17, 2008

I pity the fool

One of my boys, I believe #2, had an assignment many years ago that impressed me. He was in about the 6th grade. The assignment was to write a paragraph explaining the difference between pity and compassion. That’s an excellent assignment, for a 6th grader and for everyone. Try it, it’s not easy.

In the past few days one friend wrote of some health difficulties and told readers their pity was not welcome. I completely understand and agree with that sentiment. In addition there was a comment referring to the compassion one felt for my life with Maggie. I understand, agree with, and deeply appreciate that sentinment.

Why? What’s the difference. Many people use these terms interchangeably, and indeed each is listed as a synonym for the other in thesaurus and the dictionary. Despite the dictionary definitions, however, these two words have different meaning to me and to many other people.

Apparently Neitzche wrote extensively on the subject and didn’t like either emotion.

The best explanation I saw is that pity offers despair and compassion offers hope.

The following are my personal observations:

Both Pity and compassion recognize suffering, but pity sees it in passing and compassion stops to understand. Compassion recognizes suffering on multiple levels and wants to relieve it.

Pity is haughty. Compassion is humble

Pity is judgment. Compassion is acceptance.

Pity is distant. Compassion is intimate.

Pity is not helpful. Compassion is action, or at least desire to take action. Compassion is helpful.

In short, pity sees the situation and compassion sees the humans (or animals) in the situation.

When Mr. T. said “I pity the fool” he was using the term accurately. He was looking down on his subject, he thought them a fool. And indeed they were if they messed with him. " I feel compassion for the fool" just wouldn't pack the same punch.

All of this is subjective, of course. And the variables are several – both in the person offering pity or compassion and the person on the receiving end. One can feel compassion that is (mis)interpreted as pity and their kindness is rebuffed. On the receiving end, one may expect more than one will get. Both lead to hurt feelings on one or both sides. But when it works it really works.

Just knowing there are people out there who care and are offering their support by whatever means, prayers, good wishes, a shoulder, large sums of cash (just in case….) fills my heart and makes every day a little easier.

Friday, November 14, 2008

Weekend antennae

Home again. The quick trip was entertaining, but tiring. That is a lot of driving in two days. The boys were happy to see me and were on their BEST behavior. My sister and I did our part for the economy and left some money in the Casino. Not much, but enough.

As we were leaving the hotel yesterday, I received a call from Maggie’s school nurse. Maggie was having problems. She was ok on the bus ride and at first, but started having problems shortly after arriving at school. I was four hours, 200 miles and one large mountain range away. I told her to call my husband if Maggie needed to come home. He was on standby. I suggested she give Maggie some oxygen to see if that helped. Apparently it did. Maggie bounced back and about half way home she called back to tell me that. The second half of the drive was a lot less stressful. It’s funny, but sometimes 30 minutes of oxygen just gets her engine revved up again. Then she doesn’t need it anymore.

Something is brewing with her, though. She is not “sick” per se, but something’s off. She went to school today, and the nurse will call if there is anything specific that I can call the pediatrician or the pulmonologist about. We will lie low again this weekend and see what decides to show itself.

I hate knowing that something is looming, especially when it’s Friday. I know I can reach her pediatrician anytime because she is a great friend of mine. However, a lot of Maggie’s stuff requires the specialists at UCSF. If something hits over the weekend, you get whatever doctor is “on”. Since there are approximately 10,000,000 doctors at UCSF, chances are extremely low that it will be a doc that knows Maggie. The docs that know Maggie and me are more comfortable with my skills and judgment. The weekend docs generally err on the side of caution, which is a good thing; but inevitably, their advice is “just bring her into the ER.” Then it is 10 hours of tests to rule things out and when they are still stumped, it’s “let’s just admit her to see what’s going on.”

Do not get me wrong. If Maggie needs to be in the hospital, that is where I want her and UCSF is great. However, if Maggie does not absolutely need it, we can take better care of her here. Therefore, I am hoping whatever is brewing either 1) goes away, 2) waits until Monday 3) shows itself to be something that does not require a call to the doctor. Keep your fingers crossed.

As Thanksgiving approaches, I have to remember all the things I am thankful for. Though I complain a lot about the machinations of the place, I am very thankful that I live so close to UCSF and can get Maggie the help she needs, even when it aggravates me.

Have a good weekend all.

Wednesday, November 12, 2008

Having Maggie home from school yesterday was not fun. Sorry, but sometimes it is just difficult.

We started out having fun. We took a short spin around the neighborhood with the dog. All quiet on the western front. (Veteran’s Day reference) Then we went to get Maggie her flu shot. That went smoothly as well – she did not even react to the shot. Puh-leaze. After all this girl has been through, a flu shot is peanuts in a world of elephants.

We went to Mountain Lake Park so the dog could play at the dog park. That was great. Maggie loved all the dogs. They are always a friendly bunch there. Because the dog park is unfenced, people have to have control of their dogs. We walked the long way back to the car and Brisco found a smelly puddle of mud to roll in. The ride home was not pleasant. However, squirting him with the hose when we got home was hilarious. Brisco did not really think so, but Maggie enjoyed that immensely.

We came in the house and Maggie was due for feeding and everything else. As I was getting the feeding ready, she pulled out her trach. It was just the two of us at home and re-tying the trach really takes three hands. Especially when she is in the chair with the headrest covering her neck. Maggie cannot be counted upon as a helping hand, so I had to do it on my own. I grabbed the emergency supplies and reinserted the trach. I could not figure out how to hold it and tie it at the same time because I needed a hand to lean her forward in the wheelchair. I considered just holding it there for 30 minutes until the nurse arrived, but realized that was ridiculous. I could not even leave her to open the front door. I held the trach in place with one hand and threaded one side with the other. Then I leaned her forward and basically held her in place with my hand on the trach. (Ouch) I was quite impressed with myself when I got it re-tied in short order.

Before I could even reach around to pat myself on the back, it came out again. The trach was broken. The little flange where it is threaded had a slit in it and the tie came right off. We had to do it again. All in ten minutes. I grabbed a new one and did the whole thing again. My heart was pounding. I felt very vulnerable and I really felt the weight of the world on my shoulders.
Maggie was and is fine. She pulls and pulls on the thing and eventually it comes out. We have tried to teach her not to do this, but we have been unsuccessful. She knows exactly what she is doing, but she cannot stop herself. As I told someone yesterday, this behavior is somewhere between teenage obstinance and obsession.

But there may have been a breakthrough today. She knew I was upset. I hooked up her talker after these back-to-back incidents and she just said, “Mom is mad.” I said, “Yes Maggie, mom is mad. You have to stop doing that.”

Maybe that will work. I hope so. The nurse arrived and a little later, the nurse’s aide arrived. I made a cup of tea and went upstairs. I did not intend to take a nap, but I fell sound asleep for about an hour. That was good.

So this morning I am putting Maggie on the bus and leaving town. My sister is coming with me. I am going to visit the boys at school. I’m sure they will be thrilled to see me. Sadly, the economy is so bad that the hotel room is practically free. Well, not sad for me, I guess. I have not been up there since Tim left and it is time to check in. I will be back before she gets home tomorrow afternoon. Dad is in charge. Nurses are here and lined up for virtually every hour I am gone.

Moreover, since the boys are in Nevada, I will do a little gambling and hope my luck changes.

So I’ll post again on Friday.

Tuesday, November 11, 2008

Sorry neighbor

Happy Veteran’s Day everyone. And a huge thank you to all the veterans out there.

Maggie is off school today. The two of us are hanging out together. It’s nice outside, so we will walk over to Golden Gate Park with the dog. Maggie loves to hold the leash when the dog is on it. Brisco, who prefers to be off leash (and is very well behaved), is actually compliant when Maggie is holding the leash. He does not take off pulling the wheelchair behind him. That is a good thing, because I would have a hard time explaining myself otherwise.

I was up earlier than usual this morning. The nurse needed to leave at 6:00AM so I was on duty. She had to wait with Maggie for a minute while we did the car shuffle. It is just part of the reality of living in San Francisco. I had to run up the street and get the car out of its illegal space. We leave the driveway for the nurse at night and sometimes the parking is so difficult that we have to use some…creativity. Parking in a passenger zone from 11:00PM to 6:00 AM is pretty harmless. Unless they are running a brothel up there, they are likely not receiving passengers in those hours. It is not a business, but a community center of sorts. I never block driveways, that is just wrong and will likely get you towed. But I will say a lot of parking rules are open to interpretation, especially at night.

Parking tickets are just part of life here. One day last summer, we got three in one day. That is $150, thankyouverymuch. We have the handicapped parking placard for Maggie, but so do about 1 million other people, so it’s not that helpful. We cannot park in the garage because it’s not big enough to get through with the wheelchair and we could never get the ramp down to load Maggie in anyway. Oh, and the garage is full of crap and we could not fit a car in there on a bet. I have to fight to keep a space wide enough to get her chair through to the back of the house where the elevator is.

The van is bigger than many of the spaces on the street, but generally, I can find a space that works. Growing up here, means I can parallel park just about anywhere. My parents sent me to St. Rose, a (now closed) girl’s high school located on a busy thoroughfare headed downtown. You had to park that car right the first time to avoid being killed. The education was good, but this was an extra benefit. St. Rose girls are always the best parallel parkers. However, there has to be a space at least close to the right size. Last night, there was just nothing.

As I ran up the street at 6:00AM in my pajama pants and hooded sweatshirt, I was hoping against hope that I would not see a ticket on the windshield or, worse, a cop actually writing a ticket. Oh, sorry officer, no your right, I should not park here. Yes, I realize it is a white zone. Yes, that is my dog. Yes, he should be on a leash. Yes, these are my jammies, are you also the fashion police?

No ticket. It is the start of a good day.

Monday, November 10, 2008

Warning: I’m going to play language cop. And just to irritate you further, I’m going to make some sweeping generalizations while I do.

Over the past generation, there has been a marked decline in the use of many ugly words in the English language. Well, at least from the language of decent people. Racial and ethnic pejoratives are no longer the norm, or at least not in public places. Some people call it political correctness others call it common decency. Either way, significant progress has been made. Certainly, there is a long way to go; but we have learned as a culture that these words are hateful and hurtful. Admittedly, many individuals have not yet learned this, but overall the collective consciousness has been raised and good people refrain from using them.

Middle schoolers and those of similar developmental maturity still use the word “gay” to describe things; and generally it has nothing to do with sexual orientation. “That jacket is ‘gay’” simply doesn’t make sense. Of course, that term or others like it are still used to tease, judge and hurt. Culturally, we have farther to go in this area, but hopefully this too is waning.

One word that is equally hurtful, but has not seemed to resonate with the cultural language cops is: “retard”.

For some reason using this word hasn’t come under the same microscope and remains acceptable even among the decent folk who would never consider using racial, ethnic or cultural pejoratives.

It needs to go.

Describing someone as a retard is …. Well …. no, I won’t say it.

Presumably, the use of the word is meant to imply that someone is stupid or unable to do a simple task. Of course, that has nothing to do with actual mental retardation, which is an innate disability over which the afflicted person has no control. Equating that disability with stupidity is ignorant. Using the term in an effort to be funny is anything but.

The term is in the same class as the racial, ethnic and sexual orientation pejoratives. Though it may not be intended as such, using it in that way is equally hateful and hurtful. We need a collective cringe

When my boys were younger they knew not to use that word in my presence. When their friends were in my house or my car and used that word, they were immediately lectured. Several people have learned not to say that word – or at least not to say it around me. I can remember one friend of #1 son saying that in the back of the car and I looked in the rearview in time to see #1 sock him in the leg and say, “Don’t get my mom started.” I just smiled. To quote George W. “mission accomplished.” I didn’t have to say anything.

I do not suggest we start beating each other up to eliminate the word, but I would hope everyone will try to refrain from using it and be aware when you hear it that it is just not “ok” anymore.

I have spent every day for the past 14.5 years dealing with disability. My daughter’s disabilities are profound, and mental retardation is not even one of them. I have seen so many children work as hard as they possibly can to overcome some disabilities and/or to adapt to others. Every minute of every day for these kids is hard work. Some of them do have mental retardation, but I have yet to meet one who is stupid.

Don’t equate the two. Eliminate that word from your vocabulary. Do it just for me.

At the very least, don’t use it around me.

Sunday, November 9, 2008


Ok, this might be a little freaky, but I'm experimenting here. Many of you have asked how Maggie uses her communication device. Using our brand new webcam, I caught a minute or so of her using the Dynavox - or the "talker" as we call it around here. Here it is (hope this works)

My use of the camera is very rudimentary - you cannot see that she is hitting a switch mounted below the device. One switch moves the selection around and the other chooses it. You can hear the prompt speech - that is to cue her. Maggie is visually impaired, so it scans auditorily. The softer voice is her cue, when she makes a selection the voice is much louder. The soft voice is directed at her and the loud voice is directed at othersWhen she really gets going she starts flying through the pages and choices. Today she was a little freaked out by my efforts.

Thursday, November 6, 2008

Club Members

As the parent of a disabled child, I am a member of a club no one wants to join. People find themselves in this club generally because of a twist of fate that they did not want or expect and really do not know how to handle. We enter what we think is a dark world, bleary eyed and scared. We learn from each other and eventually figure out how to live our life with the extra responsibility of dealing with the disability. Or, in many cases, including mine, we figure out how to change our lives to accommodate out child’s needs. We learn that this world is different from the one we lived in before. And that a lot of it is much harder. Then we learn a little secret. There are parts of it that are much much better. One of those good parts is the people you meet.

Before Maggie was born, I was a successful attorney working full time and, with my husband raising my two little boys. Life was busy, but great. When Maggie was born, I suddenly found myself in a multi-faceted world of nurses, doctors and therapists. It was as though this world was parallel to the one I had been living in. There are hundreds of dedicated individuals whose jobs are to give my daughter and other children the best possible chance at life. And they are very good at it. Each of these groups, doctors, nurses, therapists, teachers, bus drivers, teachers’ aides, the staff in each doctor’s office, the hospital technicians and everybody else has my complete respect and gratitude. Each group will be recognized here at some point.
But today it is about the other parents of disabled kids.

Every baby presents challenges to new and inexperienced mothers. When you have a typical baby, there are people, and especially women, you can turn to for support, guidance and help. There is a natural support system, your mother, sister, or neighbor, anyone who has had a child before. When you have a disabled child, those natural supports just do not work the same way. Those people can still give you emotional support, but unless they have dealt with the feeding tubes and oxygen tanks, there are things they cannot help you with and you need to find someone who has done it. The question of when to call the doctor takes on a completely different import with a medically fragile child. Finding other parents who had “been there, done that” was life saving for me. And probably for Maggie too.

When I slowly emerged into this new world, Maggie was about six months old. Those first few months were bleak. Maggie didn’t leave the hospital for three months and when she finally did, her care was so overwhelming that I did not see the light of day. I still had the boys to deal with, but it was immediately clear that the career was on hold. Therapists started coming to the house and encouraged me to connect with other parents. When I finally did, I met a wonderful bunch of people who helped me through many a crisis.

Many of my closest friends today are the parents I met when Maggie was a baby. We have been through the mill together. Some of them I don’t see very often because over the years life pulls us in different directions. Some have lost their children, which is another sad reality of this world. Nevertheless, the bond is there, no matter the circumstances.

Today I had the opportunity to have a brief visit with one of those moms. I have not seen her in probably 8 years, and we just reconnected through facebook. We were supposed to have a quick cup of tea before Maggie’s appointment, but we spent our short time together traipsing back to the van to retrieve the suction machine that had dropped off the back of Maggie’s wheelchair in transit. She didn’t mind.

The years melted away. I could answer her questions about caring for Maggie with complete honesty. I didn’t have to sugarcoat anything. She understood. So many years, and so many things have happened to both of us but there we were, right back where we started.
I am grateful to her and to the other moms and dads who helped me get to this place with Maggie. I could not have done it without them.

In addition, I am looking forward to having that cup of tea.

Wednesday, November 5, 2008

Breathe in

Maggie went to school. She seems to be coming down with something, but it is not here yet. I almost kept her home yesterday, but at the last minute decided to let her go. There is a nurse with her all day anyway. If Maggie were really feeling lousy, the nurse would know and call me. I was prepared to go get her and bring her home if need be. She made it all day, but she was wiped out when she got home. Today, she’s a little better. Go figure.

It is difficult to gauge things with Maggie. The tiniest cold can become full-blown pneumonia and put her in the ICU. Other times a terrible cold will just run its course and be gone. I don’t want to over react, but I don’t want to under react either. It is a fine balance.

It used to be that my instincts were spot on. I knew exactly what was going on and how to react. That changed when she got the tracheostomy last year. It’s a strange new world for all of us. The trach caused so many problems and complications at first that we did not think she would survive the year. Slowly things settled down. Though the maintenance of the trach and the care it requires is intense and overwhelming, it really did help. Maggie is healthier, overall, than she was before that trach was placed. Funny what sufficient oxygen will do for a person.

Breathe in. It helps.

Maggie has many other health issues unrelated to her respiratory issues. Those are always present and my instincts are still on target in those areas. Many of those are extremely serious, but remain in the background. Those present an ongoing, but subdued concern. I know what signs to look for and how to react.

In time, I will develop the trach related instincts and be back on my game. In the meantime, I will err on the side of letting Maggie live her life. Maggie does not have much of a social life; it’s all about school. She loves getting ready, waiting for the bus, hearing the bus driver, riding to and being at school, she loves her friends, her teacher, her nurse and everyone she meets or works with during the day. Further, she needs to be away from me and out of this house. She is not the girl in the bubble. I cannot protect her from every germ and danger without shutting her away from the world.

Winter is coming. The first rain has already come and gone. Winter often means illness, especially for Maggie. I am hopeful that I will continue to hone my instincts to keep her safe and let her enjoy her life.

Tuesday, November 4, 2008

Big Day

I know better than anybody that there are things in life you cannot control. You just have to make the best of what happens to you in this world.


And sometimes you get a chance to exercise just a little bit of control.

We are so lucky to live here. We get to take part in our government. We get a say in how things should go. At least half of us will not win, but we will get our say. And that's all the control we have.

If you can only control one thing today do it.


Monday, November 3, 2008

Fall Back

What is all the talk about the summer solstice being the longest day. Bah!. The longest day was yesterday, the day the clocks go back. And of course that’s the day the nurse cancels. So, we had a long day together. It was fine, there was nothing scheduled. We just had to entertain and care for Maggie.

That should be no big deal. After all the excitement of Halloween, she was wiped out on Saturday. It poured rain here and she just stayed in. After a day in the house there was no way she was going to stand for a lazy day around the house.

We headed to the new Academy of Sciences again. It’s only six or seven blocks from here. The rain was gone yesterday, so we hoofed on over there. Last week was so ridiculously crowded we stayed for only a couple of minutes. This time we took advantage of the first “members only” hour. Or at least 15 minutes of it. (We were a little slow getting going). Once there we ran into Maggie’s speech therapist/augmentative communication specialist and her kids. That was great fun. Maggie always has more fun with other kids around. The tunnel of fish and the Cave of eels were particularly enjoyable. The Cave was just large enough to fit her wheelchair, both height and width. Steve pushed her through on his knees. Once inside, even Steve (6’4”) could stand up to view the eels.

We are on a short leash when we go out because Maggie needs various procedures done every three hours. She also needs tube feeding every two hours. The feedings I will do anywhere, the other stuff, not so much. We have to be home or somewhere private, accessible and convenient to do the required procedures. We came home and took care of all the necessary matters. However, it was still only 1:00PM. There was a lot of day left. If we didn't find somethign else to do Maggie would start her new favorite trick.

Maggie has developed this behavior of pulling out her trach to get attention. It is not good. It is frustrating and exhausting. She does it over and over again. You have either to hold her left hand down, or put on a “glove” that prevents her from getting at it. Of course, she can easily pull off the glove, so it is a never-ending struggle. We have tried getting angry, frustrated, acting disappointed and everything else. What she wants is attention and she gets it no matter what we do. Hence, she is rewarded for this behaior. We cannot ignore it because she will pull it right out. We needed more activity.

Steve needed to get some work done so we headed downtown. He went to his office and Maggie and I shopped in downtown San Francisco. It is a shopping Mecca. I know times are hard, but you sure would not have known from the crush of people downtown. It was invigorating and fun. Maggie kicked off her shoe as I was pushing her across Market Street, but fortunately, I saw it and retrieved it before it was run over by a streetcar.

Back home for the next round of procedures and then Maggie helped me cook dinner. She threw dishtowels and anything she could reach out of the drawers. I was exhausted. She was not. We finally sat down to dinner and she was bored. She succeeded in pulling the damn trach out just as we were finishing dinner. We jumped into action, cut the ties, re-inserted it and re tied it.

This is not my idea of a relaxing day. We definitely had fun, but the pressure to keep Maggie from pulling out her trach took so much energy, and then she did it anyway. Not sure what we are going to do about this going forward. It seems to be something Maggie just does at home, and 75% of the time just when I am home. Isn’t that special? It’s a little something just for me.
I was extremely happy to see the night nurse arrive. Waking up today in the light was so much easier than last week. In addition, it’s Monday. And my sweet daughter goes back to school. Whoo hoo!