Thursday, July 30, 2009

Keeping entertained

Trying to keep Maggie entertained this month is tiring. We definitely have an outing every morning. She needs to get out and about and loves doing that. Once we're out she's great. Maggie is happy wherever we go; a walk in the park is just as much fun as a trip to the hardware store. The problem is waiting to go out.

She is ready to go at 7:00AM. I am not. It's generally 9 or so before we get going because it helps if places are actually opened for business. Also, I have to time things to work with her schedule of procedures. We only have three hours between procedures and I don't want to do them when we're out if I can avoid it. For example today she has therapy at 11:00. We can do the procedure, go to the bookstore, go to therapy and be back in time for the next procedure. However, if I start too early, we can't get all that accomplished. So she has to wait.

I am trying to conserve my body a little bit and minimize the lifts. I've pulled something in my left arm and every day it hurts more and more. Considering I have to lift her 66lbs twenty times a day, the chance of it healing quickly is slim. Minimizing the lifts means she waits in her bed, which is full of things to play with, until I'm ready to rock and roll. (emphasis on roll).

Maggie's bed is very safe, my husband created it especially for her. She cannot fall out, there's room for lots of stuff and she can see what's going on. She slams the side rails for entertainment or to get attention. I can see her from where I sit and keep up a running dialogue with her. I stepped into the kitchen to get a cup of coffee. I could hear her in there thrashing around and I kept telling her I would be right there.

When I walked back in it was quiet. Maggie had fallen asleep. All her hard work trying to escape must have worn her out. I had to grab the camera. She woke up as I snapped this, you can see her peering out through the slats.

I was out of the room for maybe two minutes. In that time she had worked herself into this position, unzipped her pants, ripped her diaper and fallen asleep.

Oh well, at least we had stuff to do before we went out.

Wednesday, July 29, 2009

Friends in Tight Spaces

In the years since the enactment of the American’s with Disabilities Act (ADA) there have been some improvements made in the public’s sensibilities of the issues disabled individuals face. Everything from parking spaces to access is improved and the things that are not actually improved are at least on the radar. We have had many experiences of improved access or sheepish apologies because people are at least aware of the issues now.

Interestingly one of the places we have had the most difficulty is the hospital. Two separate hospitals, in fact. Why is it that there are seven disabled parking places in front of the supermarket but only three at the hospital. The second hospital has many disabled spaces but they are not wide enough to get a wheelchair unloaded. Isn’t it apparent that more people at a HOSPITAL will use a wheel chair than people in the general population? Also, haven't they figured out that an absence of steps does not automatically make things accessible? I hate to play enforcer of rules they already know.

When we were registering Maggie for her procedures the other day we had to go into Hospital admitting. It is a busy place with numerous chairs for patients waiting to be called into the cubicles for the admission process. There is room for Maggie’s chair, but she is inevitably blocking someone. That is no problem; we just roll her out of the way. Once called to the cubicles, it is more difficult.

The cubicle has a desk for the admissions person and two chairs for the patient and a companion. There is not much room for anything else. Especially not a wheelchair. As I tried to get in from the corridor, I automatically pulled one of the armchairs out of the way. The following dialogue ensued:

The admissions woman wagged her finger at me and, smiling, said, “NO don’t move that. She can wait in the hallway.” (“She” is Maggie.)

I said, “No she can’t” and continued. I thought she was concerned that I was going to the trouble, but that was not it. She did not want me messing with her chairs.

She said, (more insistent) “No. Leave that there.”

I looked up puzzled and said, “Don’t worry, I’ll put it back.”

She said again, “But she can just wait in the hallway.”

I said, with a bit more emphasis this time, “NO, She cannot. I have to be next to her to suction her.”

I proceeded to move the chair and put Maggie’s wheelchair in its place. The wheelchair is bigger and the cubicle was crowded.

She smiled thinly and said insistently, “The problem is I have to be able to get out.” At one point in the process, she would have to make copies of something.

Undeterred I continued situating Maggie and sat down in the other chair, looked directly at the woman, and said, “No, the problem is that Maggie’s the patient… (pause)… she needs to be admitted, and she needs attendant care. I will certainly move her so you can get by.”

Then I get the doe eyes and gentle correction for my impatience. “Wow, you’ve probably been here all day.”

I just smiled broadly and said, “Nope, we just arrived.” (The “You pissed me off” was inferred).
Admission went smoothly and she was able to get by the chair without any problem. (Whaaa??) I backed Maggie out of there, looked at her armchair in the corridor, looked at her, smiled and left.

She can put her own chair back.

Tuesday, July 28, 2009

Multi-taskin mama

Every mother has to multi-task. In fact, I’ll bet the term was invented after watching a mom handle kids, her boss and the dog while getting dinner on the table for a dinner party. It’s exhausting to be going in so many different directions at the same time. In that respect, my life is very much like that of every other mother. It’s just that the tasks themselves are different. I can hold a feeding tube, answer the phone, suction the trach and clean out the dishwasher all at the same time. What can I say? It’s an art form.

Yesterday after Maggie’s test, I was waiting for the van to come up from the garage. UCSF has valet parking for no charge. It is a wonderful service because the design of that parking structure does not consider the amount of room one needs to unload a wheelchair. There is just enough room to get the lift down, but apparently the designers forgot that the chair actually has to come off the lift and turn. That’s difficult to do with a large vehicle parked next to you. Needless to say, I take advantage of the valet service whenever I can.
For the first time ever, they forgot us. I gave them my ticket and we were left standing there for over 20 minutes. When I asked one of the valet’s “uhhh,what’s the story with my car” he just said, “OMG, are you still here?” There is so much activity there that they just didn’t notice. I was talking to various people I recognized and wasn’t bugging them either. Maggie looks pretty helpless out there and the wind was whipping. Once they realized their mistake they felt terrible. (Maggie was fine). He sent one of the guy running to get it.

Just as the van finally pulled up I heard, “Hello Ms. McDonald, Hello Maggie” I turned to see Dr. G, her neurosurgeon, approaching us. I ran into him the other day in pre-op as well and he wanted to know how Maggie had done in the procedure. He’s a very nice guy and takes a great interest in Maggie, who he has operated on countless times. As I started filling him in the valet came around and started talking in my other ear. “I left the car running for you.” I paused from talking to the neurosurgeon and said to the valet, “No, I need the key so I can get her in the van.”

Dr. G continued speaking. I pressed the button on the key and the lift started to unfold. I explained the problems Maggie had encountered in the hospital last week. Of course my lift needs repair. It gets stuck halfway down if you don’t catch it and guide it down. This is something I do automatically. Without a break in my story, I quickly turned Maggie’s chair around, caught the lift with my foot and guided it down. The neurosurgeon just stopped and looked at me saying “wow, you’ve got a lot going on.”

I wanted to say, “Hey, it ain’t brain surgery.” It was my golden chance to say that to a brain surgeon, but I didn’t do it. The van was blocking others, and there was a cab honking. I had to load her up while I shot the cabbie a dirty look. So I just grinned at him and said “gotta go, hope we don’t see you too soon!”

So much to do, so little time.

Monday, July 27, 2009

Medical Monday

wow, Monday was a medically involved day.

We started the day back at the hospital for a previously scheduled test. No drama this time, just an upper GI, which for Maggieis a piece of cake. She doesn't even have to drink the stuff. They just put it in her stomach through the feeding tube. Everything seems to be working reasonably well, though I'm sure there's some little surprise awaiting us. The radiologist said he needed to "study" and "analyze" the films thoroughly. I've been around doctors enough to know that means he sees SOMETHING but wants Maggie's own docs to tell me. That's fine, because she's doing perfectly well and any "problem" will be academic only.

We came home and were heading up in the little elevator we have in the back yard. This thing just fits Maggie's wheelchair, but she can't be in it by herself, so I have to squeeze my ample butt in there. It's like a game of twister. I have to stand on tip toes to get the door closed while holding the button to keep the lift moving and I'm leaning across Maggie to do that. It's a slow ride to the deck outside her room. About 1/3 of the way up I heard a noise and watched as her trach popped out of her neck. The thing broke and was completely out and I'm balanced like a wanna be gymnast trying to keep the lift moving. No one else is home, of course.

There are procedures one is supposed to follow when this happens. These procedures are written by people who live in sterile laboratories and have perfect control of every situation. This is not the world I live in. I let go of the button and just shoved the broken trach back into place. Now I had to hold that in place and still get the other 2/3 of the way to the top. I switch hands. (right hand RED!) and contort to make it happen. I now have to get the door open and get her into the house driving the chair with one hand and holding the trach in place with the other. Mission accomplished, again.

If the lab people I described were watching, they would have fainted. We are several standard deviations away from sterile at this point. I knew Maggies' nurse would arrive momentarily and this woman is like clockwork, so I just stood there holding it. Changing the trach and threading a new one takes three hands.I have done it alone, but it's safer not to so I just waited a minute. She arrived right on time and we made the change.

Two hours later the new one broke and we did the whole thing again. This time, though, she was lying in her bed, so the drama wan't there. Maggie loves to yank on the ties that keep the trach in place and has successfully broken several of them. Her pulmonologist says she's his only patient that does this (I couldn't be prouder). The second one probably broke from wear, though, so I cannot blame it on the Magster this time.

We finished the procedure for the second time and headed off to another appointment.

Now, alls quiet on the western front. What excitement awaits us this evening??? Not my problem. I'm going out to dinner with some friends....

Friday, July 24, 2009

Teach Your Doctors Well

Maggie is home again. Woo Hoo! Thanks to all of you for the good wishes.

They changed her to oral antibiotics and sent her home. She is really not very sick. Apparently the broncosopy she had on Wednesday just overwhelmed her. Thursday was rough, breathing wise, and after the chest xray showed infiltrates, the pulmonologist admitted her. She had a rough evening on Thursday, but slept well and was much better on Friday. I know from experience if you don't get out of the hospital by noon Friday, you are stuck until Monday. I started lobbying hard, but it really didn't take much to convince anyone.

Maggie kept busy working the controls on the bed at 2AM. She kept trying to make it move but it was hard work for her. Either she couldn't isolate the finger to hit the button or she couldn't press the button hard enough. She is concentrating in this picture, not sleeping. Once in a while she would get the bed to move and then she could not stop laughing. This is when I knew she didn't need to be there.

I had a huge fight with two young residents on Thursday night. July is a bad time to go to a teaching hospital. All the new docs start on July 1. Not only are the new green doctors a bit over anxious, there are the newly promoted 2nd and 3rd year residents who are preening for the new docs.

It felt like the more senior resident was conducting a class for the younger doc entitled, "I will show you how to deal with a parent." Perhaps her heavy handed techniques which included doses of parental guilt and scare tactics work on some parents. Me? Not so much. I changed the curriculum of that class a little bit. Hey, it's a teaching hospital, I was just doing my part.

My husband says after I did my part those two residents are reconsidering their career choices.
I am Maggie's voice - and it turns out she has a REALLY big mouth.

P.S. Shout out to Junior, one of my loyal readers, who IS still inthe hospital with pneumonia. Get well, my young friend. Try moving the bed, it apparently has healing powers.

Streak comes to an end

Our longest ever streak of staying out of the hospital (as an inpatient) has come to an end. Maggie has pneumonia and despite my lobbying to care for her at home, she was admitted late Thursday afternoon. She could not keep her oxygen levels up without supplemental oxygen and as the fever started showing up I figured I better call. Given yesterdays procedure and anesthesia, they can't take any chances.

I'm sure we will be here for the weekend (blah!). One young resident said something about a 7-10 day course of antibiotics and I said "WHAAAAAAT ?" She looked nervous and I said, we'll just wait and see how it goes. She is not a "decider." I know if it's possible the docs will let her go home and continue oral antibiotics. A few days will determine that.

So, for now, here we sit. The things about pneumonia is it gets worse before it gets better. No fun for Mag or any of us.

I did see the GI doc today in the hallway. He asked why we were here and I told him. He asked if they were going to find anything in her lungs. Hahahahah. Now it's just a funny joke. . I just smiled and said, Maggie's like a box of cracker jacks, there's always a little prize.

Actually, he's a really nice guy - this medium makes it sound like I don't think so.

Thank God for Wi-fi!

Wednesday, July 22, 2009

Alls Well

Thanks to everyone for the good wishes. I was growing increasingly nervous as the day went on. We are home - it's just before 9:00PM, so it was only 6 hours total which is not bad.
The procedure started about 20 minutes late - I was ready for a couple of hours, so that was a nice surprise. Things went about as expected. We didn't get terrible news, which is a huge relief, but things have definitely deterioriated in the last year. Why? Who knows? Some cultures and the test Monday will tell us that. Next steps? Stay the course unless the cultures show something freaky.
I have been pushing for this test for several months. In March (4 months ago!) Maggie swallowed the tip of a syringe. I wrote about it when it happened. Maggie World: No tip required
It never reappeared. We searched for weeks and I called over and over again. The GI doc was sure I had just missed it. The pulmonologist was concerned enough that they ordered a chest x-ray in May, (which I also wrote about Maggie World: Lucy and Ethel) but it didn't show up. They didn't expect to be able to SEE it because it's rubber, but they could tell nothing was plugged off either.
My continued insistence that symptoms were present finally got them to schedule this but the syringe tip alone was not enough. These pesky symptoms had to be investigated. The GI doc told me in pre op he would NOT find that syringe. I said that's fine with me, I don't want it to be in there.
Of course it was there. Exactly where I said it would be - stuck in her esophagus. In fact it was acting as a perfect plug preventing secretions from dropping down into the stomach backing up into her mouth and probably causing her pulmonary symptoms as well. Hmmm. Perhaps they should listen to moms. I did have some basis for this. She swallowed a tooth once before and they had to get it out of her esophagus months later. Her body doesn't work right and things can't go down (hence the feeding tube). That was an “incidental find”, it wasn't causing any symptoms. It was simply the most expensive tooth extraction in history. The GI doc came out of the OR with the thing in a specimen jar and said “You were right, thanks for staying on us”
If that's the root of the problem, she may get better without any more trouble. If she is aspirating, though, as we all suspect she it, we will have a road ahead yet.
But we're back and she's trying to pull her oxygen off and she's driving Steve crazy, so I better go.

Out and About

Maggie finished summer school on Friday. That means I have to find some way to keep her entertained every day for the next month. The nurse still comes in the afternoon, but generally, Maggie stays at home when the nurse is here. Therefore, I need to find activities and outings for the mornings or Maggie will not get out at all.

It really doesn't matter what we do, it's just breaking up the monotony of the day. We will have some fun outings and some not so fun. Some days we are meeting up with her former (sob) teacher to go for a walk and keep Maggie sharp for her transition to high school. (fun) Some of those days will be taken up with medical appointments.(not fun) Today is both. Maggie has some tests at the hospital late this afternoon. We had already planned a walk with Teacher Joe at noon and we are staying that course. Maggie has to go without food all day before getting anesthesia, so keeping her entertained is VERY important today.

Yesterday we had a different kind of outing. I offered to take my aunt to Trader Joes. Maggie loves to shop and I figured that would be fun for her and get the shopping done at the same time. That means a ride downtown, interacting with my aunt and spending time in Trader Joes with its music and brightly colored signs. This particular Trader Joes is near Fisherman’s Wharf, so there are lots of interesting people around too.

You may recall my aunt recently moved home from the assisted living facility. Despite the move, she still needs assistance. She is still regaining strength and her walking is still shaky. Of course SHE doesn’t think she needs assistance, which makes things more difficult. It wasn’t until I awoke on Tuesday morning, perhaps three hours before the scheduled trip that I realized I could not do all of this alone. How could I get her through the grocery store while pushing Maggie’s chair and pulling the basket. I would not have any way to assist her; both arms would be engaged. I called her to see if we were still on and was very relieved when, before I could even say a word, she suggested she bring her walker. Yes! That is an excellent idea.

When we arrived at the store, she considered leaving the walker in the car and relying on the store basket. Noooo. Let’s go with Plan A. I parked in a handicapped spot – never in my life feeling more justified in using it. In fact, I could have honestly taken two and felt ok about that. The wheelchair lift needs some repairs – things that are supposed to work automatically currently require manual control. It’s no big deal but it probably takes and extra minute or so to get out of the car. I was running around the car to release the wheelchair lock and wondered if Auntie was swaying or if that was my imagination. Thank God for that walker.

As you would expect, the handicapped parking spot is very close to the entrance. However, it is even closer to the exit. Hence, that was the door for her. I had to go through the entrance with Maggie and open the exit doors so she could enter. I am still not sure why. She went up and down the aisles of the store, albeit slowly, but she would not walk the five steps to the entrance.
We shopped. People gawked. But really, who could blame them. We were a sight. The older woman with the walker, the middle-aged woman pulling the basket and pushing the wheelchair, stopping ever 30 seconds or so to suction the child in the chair, and Maggie, who was quietly taking the whole scene in.

For some reason a line from “You’ve Got Mail” played in my head. Tom Hanks, a 40-year-old man, is in Meg Ryan’s bookstore with two young children who turn out to be his uncle and his sister. He tries to explain this to Meg Ryan’s’ character and in pure Tom Hanks fashion sums up the situation with a toss of the head and a smile and a clever statement. That statement also summed up our situation today.

We Are … An American family.

Tuesday, July 21, 2009

Queries from Stranger Part I

The other day I wrote about the need for many parents of special needs kids to act as ambassadors to the non-disabled world. I commented on how difficult that can be when people say stupid things. A couple of people wanted to know some of the stupid things said and my reactions. I can relay a few of those, but it is difficult to recreate the emotion of the moment, or the context of some of the comments.

Initially I wrote a long piece listing various examples, but trying to capture 15 years of idiocy in one entry is too whiny, which is not how I feel. Besides, focusing on the stupid or offensive things subordinates the kind things people do or say. The kind things astound me. Nonetheless, inquiring minds want to know, and I want to tell. Therefore, I will just put the idiocy and into general categories and serve them up slowly along with the responses.

The first category of stupid or offensive comments is best described as “who’s at fault.” People want to blame someone. They want an explanation of “what went wrong” perhaps just to reassure themselves that it will not happen to them. I understand that, but it is distancing and makes me feel very isolated. No one wants to be the “don’t let this happen to you” example. Further for a parent and family working on acceptance the word “wrong” is not helpful. In Maggie’s case, nothing went “wrong”. There was no doctor screw-up, no accident. Nature just made her different from other people.

Maggie’s appearance was obviously different from other babies. Her head was very large and her body very small. Her eyes did not stop moving and gazed off to the left, never straight ahead. I did not see any of that. I saw this beautiful little girl who survived 11 weeks in the Neonatal intensive care, including five major surgeries while she was there. I saw a miracle child. There was no denial. I was very much aware of what her health challenges were (though the disabilities unfolded later). She had been through more medical intervention in the first week of her life than most people have in a lifetime. But her appearance was startling. People wanted to know how and why this happened. Who’s at fault?

Of course, the easiest person to blame is the mother who carried the baby. Surely she did something.Did you travel? Did you eat strange things? Did you work too much? Etc etc etc. The most common however, was whether I drank or took drugs. I cannot even estimate how many times people asked me if I drank alcohol when I was pregnant. This was mostly when Maggie was a baby, but I still get it occasionally. In the beginning, it was like a knife going through me every time someone asked that question. They might as well have been saying, “Why did you do this to your child?” Now, I think the question is as stupid as the person asking it.

Generally, when people asked me this I was alone with Maggie. People do not accost you when you are with your husband and two little boys. A woman alone with her “strange” looking child is fair game, however. People learned very quickly that I don’t do the stereotypical “little woman.”

My responses ranged as follows:
1) Steely silence accompanied by icy stare; (most common)
2) “Do you have any idea how insulting that question is”;
3) Are you suggesting this is fetal alcohol syndrome? Do you have any idea what that is?
4) “No, but I drink a lot now”; (my personal favorite)
5) “OH! Was that a bad idea” and if Steve is with me, looking at him incredulously.
6) “Only to excess” with a huge grin.

The response depended on a number of factors. Where were we? A stranger on the street is different from a mom in the schoolyard. Was this a child or a grownup? Was it an older person. (note – it was almost never children or elders.) Was this a clerk in the store transacting business ((#1, 3, 4) Were the boys with me? (Very big factor) (#1, 2, 3) Was I alone? (#1,4-6). Etc. Of course this analysis wasn’t really done – or at least not consciously. Looking back now gives me a different perspective.

I do know this; I never simply answered NO (which, if you are wondering, is the answer).

I will get into other categories as time goes by. There are some winners out there, believe me.

For now, it's almost 7:00AM. I think I’ll have a little nip.

I'm always interested in your feedback. I know that intrusive questions are not limited to the world of disabled parents. We just have a larger market share. What stupid questions do you have to face?
You can either comment or sign the guestbook. I'll get it either way.

Sunday, July 19, 2009

The Empowered Patient

This is a little different entry for me. I met a different kind of person the other day and she made a great impression on me. I admire people who find a way make the most of a situation, those who do not cower in the corner. I admire people who, when faced with adversity, say, “what do I do” instead of “Woe is me.” Not everyone can do it, which is what makes it admirable. I met just such a person on Friday. Her name is Julia Hallisy.

I never met Julia before Friday. I knew of here because we have many friends and acquaintances in common. We went to the same small girls high school, though she is younger than I. Our kids are roughly the same ages and went to rival schools, Many people have told me I should meet her. I have been meaning to contact her, but life is always in crises mode around here and I never got to it. I was delighted last week when she contacted me and I understand now why people told us to connect. We talked for almost two hours over a cup of tea at Starbucks. When I left I felt encouraged and energized.

Julia has been through life’s most difficult circumstance. In 2000, after years of cancer treatments and complications, Julia’s 10-year-old daughter Kate lost her battle and passed away. Julia and her family were devastated and grieved for Kate. They did not let her struggle be in vain, however. Instead of letting it defeat her, as it would many, Julia managed to find meaning in the experience and used it to help others.

In the years her daughter received treatment, Julia watched and learned. She made notes and asked questions. Julia learned nuances of hospital care, how and where corners are cut that effect patient care. She learned the hard way how infections are spread, the havoc they wreak, and how easily they can be avoided. She learned when to get a second opinion and how to keep health insurers on task. She learned not only the questions to ask, but also the identity and title of the person who could answer them. Then she did the best thing possible. She wrote down everything she learned and published a book called The Empowered Patient.

Navigating the health care system is complicated and frightening. I have been doing it very well for 15 years and I still find it overwhelming. Moreover, it is necessary only at the most emotionally charged moments of our life, when someone we love is ill and we are least able to face the challenges the current medical system presents. The Empowered Patient is a book that everyone should have at home. When you or a loved one go into the hospital or need ongoing outpatient medical treatment, this book provides pragmatic advice about what to do and how to get it done. This is not the time to try to figure things out. If you have this book on hand, you do not have to. The Empowered Patient provides hands on advice for patients, their family members and anyone who cares for them. It is a road map for health care. You can find the straight answer, or at least the right questions to ask.

Everyone is dealt a hand of cards; some get great hands, some do not. That is not the end of the story, however, unless you let it be. You cannot fold just because you have a bad hand. You have to play the hand to stay in the game. Especially when the game is life and death. Sometimes the way you play the hand makes all the difference.

Check out or go to and see for yourself what an amazing thing this woman had done with the hand she was dealt. She did not fold. And we all benefit from that.

Friday, July 17, 2009

End of the Rainbow

Transition day. Summer school ends today. Maggie will move on to high school next month. One of her classmates is also moving to high school, but he will be in a different class. Maggie will not be alone in the new class, however, she will rejoin friends from years past. There just are not any that many students in Maggie’s situation – that is kids with significant physical disabilities who have good cognitive skills. The few that are near her age in the San Francisco School district have generally been in her class since kindergarten. There are a few just older than Maggie who are already in high school and those kids will be back in our world once again.

Not all of the physically involved kids are in special day classes. Those that can handle it are in full inclusion (regular classrooms) so they are not in Maggie’s class. Maggie could not keep up with that and would be miserable. She would make everyone else miserable too. She’s a smart kid, but she needs things to be paced in a certain way and presented so that she can process them visually etc. It is a laborious task, but when it is done correctly, she can really demonstrate her intellect. Often kids as physically involved as Maggie also have significant cognitive impairment. Maggie’s impairment is not significant. I am certain that the damage to her brain and the repeated surgeries and illnesses have affected her cognitive abilities somewhat, but she is a pretty smart chick. She wants to interact and show everyone what she knows.

This past year she was the only one in her class who had the ability to use the communication device. That meant a lot of attention was focused on her, but it also meant she did not have any peers using a similar device. There was plenty of communication with her girlfriends and with the other kids in the class, but having a peer using a similar form of communication challenges her. And she rises to the challenge. In the class she will enter, I know at least two other kids use these devices. Maggie will love that, even if it means she is not the Queen Bee for a while. It may be bumpy getting adjusted, but I am looking past that and expecting a good experience.

Before she gets there, though, we have a month off school. Rather than a week at the beach, we will spend part of it trying to get to the bottom of whatever these medical issues are. The school nurse called again today with more alarming news that necessitated a call to the pulmonologist. They are scheduling the procedure to scope her airway and lungs and her GI tract as well. There are some freaky colors coming out of her various tubes – but she is smiling and generally healthy. Go figga. I have learned from experience, however, that anything strange is a harbinger of problems to come. You cannot ignore it; you have to deal with it.

When they investigate strange occurrences with Maggie, you always get a very strange answer. It inevitably starts with, “Well, Mom*, this is something we’ve never seen before.” And my knees get weak. I can hear the rest now. “All these strange colors…. Maggie seems to actually BE the end of the rainbow. Good news: We found a pot of gold. Bad news, it’s in her right lung. Oh, and she’s allergic to it.”

*cringe – I hate it when they call me mom

Wednesday, July 15, 2009

Coghlan Beach

Tuesday was 80 degrees in San Francisco. I was in the house almost the entire day. Wednesday the fog rolled in and it was about 50. I went down to the Bay to take a walk with my son Tim and the dog. Tim laughed when I told him I missed the beautiful weather and was out in the fog. He told me I was very San Franciscan. Maybe I am, but it would have been nice to actually SEE the Bay while we were walking.

We went to Crissy Field, which is a great walking spot and is dog friendly. Much of is it wheel chair friendly, so I go there with Maggie frequently. She was at school today so we went off the trail a bit. The Golden Gate Bridge towers over Crissy field and you feel like you are walking in a postcard. Not today, of course. It was so fogged in you could not even see the bridge. We headed in the direction away from the Bridge. When we hit the yacht club, I said, “Let’s go to Coghlan Beach.” We just looked at each other and grinned.

Coghlan Beach is a small sandy beach at the end of a spit of land that forms the outer edge of the harbor behind Marina Green in San Francisco. I am told that at high tide it disappears completely, but every time I have been there, it is visible. There are probably fewer than 300 people in the world that know it is called Coghlan Beach and 250 of those people are past and present bay swimmers. The rest are members of my family. Now all of you know too.

Coghlan Beach is (unofficially) named after my father, Frank Coghlan. (pictured) He was a very well respected bay swimmer. He belonged to the South End Rowing Club ( for nearly 40 years and swam in the San Francisco Bay almost every day until he was about 80. This includes over 50 swims in from Alcatraz and dozens of swims across the Golden Gate in the tricky and dangerous tides. You have to be a certain type of person to do that. Not just a strong swimmer (that goes without saying) but also an adventurer. A warm-blooded adventurer. Being a little crazy is also helpful.

The beach was named for him after he was pulled in there by the tides during a long swim. He was over a mile from his destination and had to be picked up by one of the pilots. It was so foggy that day he had no idea where he was – he could not see the entrance to the harbor only a few yards away. He stood there in his Speedos and bright orange cap until one of the rowers came to get him. That may be the only time he was every picked up by a pilot boat. He was a VERY strong swimmer and finished what he started.

Needless to say, he received a lot of good-natured ribbing from the other members of the club, especially those much younger than he was. They named the beach in his honor. Though it started out as something of a joke, the name stuck. Every year since then the South End holds the “Coghlan Beach” swim as one of its official swims. I checked the schedule and this year they did it twice, January 11 (brrrr) and the evening of June 5. My dad would have loved both, but especially the January swim.

He was very proud that this beach was named for him. Other than my mom and his family, the two things my father loved most were San Francisco and swimming in the bay. To have a piece of the city – especially a beach - named for him was the best possible honor. My sister Joan went out to Coghlan Beach and gathered some sand, put it in a baggie and brought it to him in the hospital just before he died in early 2007. That made him very happy. Remembering all of that today made me very happy too.

I wonder how we would go about making that name official. My husband has already made the sign and we are ready to go put it up – but it might be better left as it is.

He is a legend.


Parents of children with special needs have many responsibilities. Caring for the child is the biggest and that can be exhausting both physically and emotionally. Educating themselves about their child’s specific needs and advocating for those are right near the top as well and that can be all encompassing.

But there is more.

Every kid, typical or otherwise, need parents show them how to interact with the world. Parents teach best by example, but sometimes they have to intervene to steer a child off a wrong track or even resort to the dreaded lecture to drive a point home. Special needs children need the same thing, but often because of their disability, they cannot understand or apply the information in the same way. Parents of special needs kids have to be more creative. Our kids also have to learn how to deal with the non-disabled world that does not understand or even particularly care about their differences. Like every parent, we have to pave the way for our children; but, because the road is rougher, the job is tougher.

Part of that is deciding how to interact with inappropriate remarks, questions, stares, etc. We have to figure out our own responses first before we can begin to teach our children. When the inevitable stupid remark or question arises, the easiest thing to do is get angry or dismissive. Easy is not always best. There are certainly times anger is warranted, but often it serves only to further isolate the special needs child as well as the parent. Often we have to swallow our first emotional response and act more diplomatically. We have to be ambassadors. We have to be the ones to bridge the two worlds.

It is very easy to become isolated in the world of special needs. We need to keep one foot in the rest of the world or we will go crazy. If you alienate your contacts outside the special needs arena, it is more difficult to protect your sanity. Sometimes, however, those contacts are the ones saying the stupid things. What to do, what to do.

When Maggie was little, I read a book called Facing the Crowd that dealt with this issue beautifully. (I do not remember the author and I believe it was published in Australia but it is long out of print now.) Jeri Hart, Maggie’s home counselor from the Blind Babies Foundation, lent it to me. (When I spoke with her last night, I learned they are still using that book for new parents.)

Facing the Crowd suggested that a parent stop and mentally categorize the person before responding. If this person were important to you or your child, e.g. a doctor or family member, you would have a different response than you would to a stranger on the street. A neighbor that you would see often might warrant a kinder, gentler response than a staring stranger at the drug store. Some you have to educate and inform, others you do not. Not everyone is going to be interested in your child’s challenges, and it is not our job to change their minds. It was an excellent tool to get me through those early years.

I’m not sure I still do that because after this amount of time we are just living our life. I am no longer interested in educating the world about Maggie nor do I resent strangers who don’t care. If people say stupid things I may kindly respond or I may snap at them. These days it is much more about my mood than the role that person plays in my life. (In other words, WATCH OUT!)

Playing the ambassador role worked for me, but it does not work for every parent. Some do not want or need to, but that is rare. Some simply miss the opportunity to be ambassadors. Some just cannot handle it. Some are too angry to do it effectively. Most however, do this seamlessly and bring two worlds together.

It just comes with the job.

Tuesday, July 14, 2009


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!

Monday, July 13, 2009

House of Cards in Tornado Alley

I live in a house of cards and there is a strong wind blowing.

I started this blog almost a year ago when there was a disruption in the space time continuum of caring for Maggie. At that time, the nursing agency we had been with for several years suddenly pulled the plug on Maggie and other similarly situated kids/patients whose care was paid through Medi-cal. (California state version of Medicare). My house of cards was fluttering all around me. I thought I was going to lose my mind then and started writing about things. It turned out that that writing and sharing Maggie’s life with all of you has been cathartic and relaxing.

In the months since I had to set up a business and find, schedule, hire and fire the nurses on my own. I also have to pay them; but on the 11th of every month, I am reimbursed for the expenditures of the month before. The reimbursement comes from the state through the Golden Gate Regional Center. I had to borrow money to pay the nurses for the first month but since then I have used the reimbursement from the previous month to pay the current wages. I pay the nurses on the 15th and at the end of the month; hence July 15 I owe the nurses for the first 15 days of the month (two shifts a day) and I use the reimbursement from my expenditures in June to pay for it. I cannot get ahead and have not been able to pay back the initial loan I had to take out, but it is basically working.

In order to be reimbursed, I have to complete archaic paperwork that must be completed in pen. I have to list every single shift a nurse worked, what time, how many hours etc; and a separate sheet is required for each nurse. Then I have to do an additional worksheet totaling it all for them. It is a pain, (Note the paperwork is not the problem, but I cannot understand why this cannot be done online or even saved in my computer, but no.) The paperwork must be submitted on the 1st of the month, which I do by fax and then mail the originals. That gives them 10 full days to prepare the checks. It takes me at least a day every month to do that – this in addition to the scheduling, record keeping, pleading and cajoling to find nurses and covering shifts where this is unsuccessful. Note, when I cover the shifts there is no reimbursement.

This month the 11th fell on a Saturday, meaning I could not pick up the check until today, the 13th. That is problematic. I have to get the check in the bank and cleared before I can distribute the funds on Wednesday. To avoid any delays in this delicate balance I agreed to pick up the check rather than have it mailed. The first month they mailed it and I never received it – I have no room for errors so I agreed to pick it up. Picking up the check requires a trip downtown, parking on the street, going up to the 6th floor, and signing for the check. It is not far, but overall it takes me about an hour to get there, pick it up and get to the back.

This morning I arrived early because I knew I had to get right to the bank. If I talk to the bank manager, I can get the funds released in time for the 15th. Today I waited and waited and after several minutes, I was told my check was not ready.

Me: I’m sorry, what now? (sensing cards fluttering off the top)

Accounting guy: “Oh. Some of the checks are not be ready. Maybe tomorrow, so you will have to come back. (more cards fluttering by).

I told the guy “Maybe” was not good enough. He didn’t care. Nobody cares. I talked to the manager who sent out another person to talk to me. She said we had a problem last week because the mail was late. (4th of July – Not sure how that effected anyone because the 4th was a Saturday and they already had the extra day because the 11th was also a Saturday.)

I was broken. I am working as hard as I can to make this whole thing work. Yes. I know I am the parent. Maggie is my daughter and my responsibility. However, it is more than anyone can handle on their own. There are programs in place to assist her and to assist me. If they do not work, they do not help. I have already taken on the management of the entire process, in addition to my role as primary caregiver, keeper of supplies (itself a full time job) nursing assistant, transportation engineer and -- oh yeah - mom.

I understand that glitches happen. I do not understand why no one has the courtesy to contact me and save me a trip downtown, and perhaps give me the weekend to try to figure out some other financial arrangements. I do not understand what I am supposed to do about paying these women on Wednesday. I do not understand why the organizations that are supposed to provide help are making things harder.

As I headed back home, I was fighting tears of frustration and anger. It is all so delicately balanced that a glitch like this, coupled with the bureaucratic lack of concern, sends me over the edge. I was really trying to keep it in perspective when then nurse called from school to tell me that Maggie is not well and is (once again) coughing up blood. Great. I went straight to the school to get her. Maggie is home and she is ok. It is likely she is brewing something, but for now, she is doing well. I just have to make sure all the shifts are covered so she gets the care she needs. Then run to pick up six prescriptions from the pharmacy.

Then we can start it all over tomorrow.

After that we just wait for California to balance its budget. Undoubtedly the powers that be will cut more services to Maggie and her peers so that it can pay for more prison guards or something.

Saturday, July 11, 2009

Too Many Cooks

We had a late dinner last night just because I was moving so slowly yesterday. The nurse was already leaving by the time I cooked dinner, so Maggie came into the kitchen to “help” me. This is one of her favorite activities.

Because her wheelchair is so cumbersome and the kitchen so small, there is really just one spot for her to hang out while I prepare dinner or do dishes or whatever. Maggie is parked next to the counter where she can reach the pot drawer and dish towel drawer. If I am cooking at the stove she is directly behind me. I have to make certain that anything breakable is out of her reach because she flings anything she can find. I did recently lose a 40 year old Betty Crocker bowl because it was in the pot drawer and did not survive Maggie’s “cooking”. (My own stupid fault.) The counter top holds the microwave, the coffee maker and whatever else happens to be laying around. I push the coffee maker out of the way and dissuade her from opening and slamming the microwave door because when she does she moves the entire thing. Losing a bowl is one thing, but the thought of the microwave flying across the room is something else again.

As I was starting so late, I just let her do her thing and concentrated on preparing and assembling the eggplant parmesan. It’s easy, but it takes several steps. I kept up a constant chatter with Maggie who would respond by flinging a pot top or utensil onto the floor with a resounding clang. The towel drawer was opening and closing with a force that makes my furniture building, wood loving husband wince. [but he wasn’t home yet, heehee]. I knew what was going on behind me but I was ignoring it and just talking to Maggie about how to make eggplant. She may not have been that interested.

When I finished I turned around to find the drawers pretty much cleaned out and a very satisfied looking Maggie. You can see the drawers opened. Once I picked up the towels, there were the pot lids. Too bad she didn't throw the towels first. It may have been quieter.

I think it was Hell’s Kitchen and she was telling me to hit the road.

Too bad. Dinner was delicious.

Friday, July 10, 2009

Pesky little BUGS

This is a subtle little bug, but I have to admit ignoring it is not working. I do not feel well.

At first, I figured it was psychosomatic. My mom was not feeling well and she needed a thermometer. I went over there with chicken soup and a thermometer on Tuesday and her temp was over 101. She is very good about staying in bed and taking care of herself and she is back on the upswing. When I left there, I thought I felt clammy, but decided that was power of suggestion.

On Wednesday, I walked the dog around Mountain Lake Park and the slight hill seemed insurmountable to me. I was exhausted and I could not figure out why. When I reached the top, I felt fine, so I dismissed that too.

Yesterday I felt great when I got up but as we were heading down the elevator for the bus, I felt nauseous. Hmm, maybe there IS something going on. I decided to lay low yesterday but that was not to be. At 8:30AM, the school nurse called and said Maggie was not well. This nurse is the calmest most professional woman in the world. If she is concerned, I am concerned. When I asked what was going on she described some coughing fits on the bus and then listlessness. She said “I wouldn’t say she’s unresponsive, but…” That was enough for me. I hopped in the car and headed over there to get Maggie.

We were going to have a day of chick flicks and HGTV, but Maggie perked up as soon as we got home and needed more entertainment than that. I had to just power through the malaise. We drove Tim to his final interview (yes he’s employed! can you say venti latte, please?) and shopped at the Safeway until he finished.

It is always a trip to go grocery shopping with Maggie. I push the wheelchair and pull the grocery basket behind me. Navigation is not easy, especially turns. We are an obstacle for other shoppers, who generally give us a wide berth. However, shopping aisles are getting narrower and full of more displays all the time and there is just not very much room for a wheelchair. We are a sight to behold. As I came around one turn, I knocked Maggie into a display of wine. I held my breath as a couple of cases teetered, but happily, they did not fall. (Maggie thought that was hilarious – the only thing better would have been the actual crash.)

Tim joined us as we were finishing up and I asked him to run back to produce to get me an eggplant and he said let me take Maggie. The two of them RACED across the supermarket while I unloaded the groceries onto the belt (dropping a box of raspberries all over the floor in the process). They came back with Maggie out of breath and laughing. I was exhausted.

I managed to steal a nap for about an hour after the nurse arrived and then had to run an errand with Tim in the late afternoon. Today I feel like I was hit by a Mack truck. I am surrendering to this bug and laying low today. Maggie is back in school and I do not expect and calls (fingers crossed).

I actually had plans to go out with the girls tonight but it appears those will have to be shelved. That is a bummer. Because if laughter is the best medicine, that would probably cure me right away.

Thursday, July 9, 2009

Looking back

I stopped at the Post office today and ran back to the car just in time to avoid (another) parking ticket. As I started the car, I realized I was in the very same parking place where I had another car issue several years ago. Remembering it today made me laugh as I was driving home.

A few years back I went into in the post office with Maggie. Brisco (the wonder dog) was with us and waited for us in the car. We were gone only a few minutes but when we returned I could not get the wheelchair lift to open on the van. It did not make any sense; we had just left it 3 minutes before. I tried every trick I knew, but the thing was stuck and there was no way we were going to get that chair back into the car.

Fortunately, the post office is not far from home, it is maybe ½ to ¾ of a mile northeast of here. If one walks west and then south, it is virtually flat so it is an easy walk. However, if one walks south and then west one has to head up a very steep hill. In fact, “Lone Mountain” college (now part of the University of San Francisco) is just up that hill. The name ought to give you a clue about the quick elevation change.

I did not have a leash for the dog, but he is very good off leash and that did not concern me. Even if a cop approached me for violating the leash law (which has NEVER happened), I was pretty sure my tale of woe and my daughter in the wheelchair would prevent a ticket.

We were parked just East of the post office, so we had to walk by it to access the flat route home. Of course, it is a POST OFFICE and there are several uniformed letter carriers milling about. Brisco is perhaps the greatest dog alive, but he is a dog. And he dislikes letter carriers. And I still did not have a leash.

We had no choice but to head up the very steep hill. I have to tell you pushing a wheelchair up a steep hill is not easy; in fact, the only thing harder is trying to control it going down a steep hill. And this hill has a rapid (steep) vertical rise. I was pushing at about a 45-degree angle with my arms stretched out above my head. We were a sight, I tell you. My cell phone rang but there was no way I could let go of the chair to answer it. When we arrived at the top, I was completely out of breath. Maggie was laughing and Brisco was wagging his tail because the park was now in sight. I checked the phone and it was Steve just checking in.

I called him back and told him my sad, but ridiculous, story. He was asking a million questions about the problem with the car but I could not answer any of them. I did not know what was wrong and I had other things to deal with because just then it started to rain. Not too much, but it was the huge drops warning of an impending downpour. Now Maggie was laughing so hard she was hardly breathing. Brisco was still eying the park and I was calculating how fast we could get home. We made it without any more drama.

When the nurse arrived I walked back to the car to figure out what was wrong and what to do about it. Brisco came with me – this time on the leash. As soon as I arrived, I saw that the lift was wedged behind the front seat, which for some reason was slightly reclined. It took me about 10 seconds to fix it.

A frustrating day, but a fun memory.

Tuesday, July 7, 2009

Soft Serve

This short summer school day is still throwing me off and there are only eight school days left. It appears I will not adjust after all. The mornings are not the problem, we seem to have figured that out, but now I’m having trouble timing my errands with the bus arrival in the afternoon. Especially when he’s early (grrrr) as he was yesterday. Given our ambitious undertaking yesterday, missing the afternoon bus by 30 seconds was pretty impressive. (Remember that Maggie has a nurse with her so she’s safe.)

Yesterday Tim and I headed to the DMV, which is always a treat, and perhaps even more so on the Monday after a three day weekend. I had to replace the stolen/lost/disappearing handicapped placard and Tim needed a copy of his clean driving record to show potential employers. We arrived around 11 and stood in line #1 to obtain our numbers which would show us how long we had to wait.

The guy behind the counter in line #1 was a big gruff looking fellow. He looked at my completed paperwork for the placard and asked “Is Mary (Maggie) with you today?” “No,” I responded, “she’s in school this morning.” He just harrumphed and gave me the #. It crossed my mind that he was indicating I would have a problem but it was clearly not something he was going to discuss with me. His job was to distribute the numbers. I could deal with my paperwork problem AFTER I waited in line. My number was B033 and Tim’s was G099, which means nothing until you saw they were on B002 and G060 at the time. Ok, time to get comfy. Tim, wasting no time, went across to the market/deli and applied for a job while he waited.

The DMV is only about 5 minutes from here, but at noon it became clear that I wasn’t going to make it. Maggie’s bus comes at 12:30 and there were still 17 people ahead of me in the “B” line. Tim’s line was moving fine, though. He was about two people away. I got back into line #1 and told Mr. Gruff I had to go meet her bus and asked if I could do this by mail. He said yes, but it would take awhile. I then asked for an appointment to come back but he said the first appointment was mid-July. He then looked at me straight on and said, “how old is Mary?” I said, “she’s 15 – and she needs total care, so I have to be there when she gets off the bus.” Mr. Gruff suddenly softened and said “follow me”. He took me right up to a window and told the woman to wait on me next.

Yes, that’s right. Special treatment! At the DMV! By a scary looking guy that I thought was messing with me. I got the placard before Tim got his driving record. I felt pretty good about the world and vowed to stop misinterpreting people.

Also I changed Mr. Gruff’s name to Mr. Softy.

Monday, July 6, 2009

Back to Monday

Ahh, a long weekend. Wait, that is not entirely accurate. It should be, “Ahhh, the Monday morning following a long weekend.” I love the break from the routine almost as much as I like returning to the routine. Maggie is back in school this morning and that is good for her and good for me.

I find myself completely worn out on the days she is off school. I have to find some way to entertain her, which is not at all difficult because she loves to do anything. However, it takes a physical toll on me. That is eight additional hours of lifting, pushing the wheelchair, etc and it tires out this old body o’mine. Summer school is out on July 17 – a week from this Friday -- so I have five weeks of this to look forward to before the school year starts.

I do most of the lifting anyway, but these extra hours without help make a big difference. The nurse that comes in the afternoon does not do any lifting. She cannot do it. That may seem ridiculous, and some will suggest that I get rid of that nurse, but she brings other attributes to the table and besides, she has been here since Maggie was born. She is like a member of the family. I had a helper coming in a couple of days a week, which was great when I had to go somewhere, but it look like she has other employment. Besides, my commitments changed and it felt somewhat stupid paying someone when I was here.

Despite my aching shoulders and arms, I have to say the weekend was great. We had my mom and sister over for a barbecue on the 4th. Tim’s friend Quran came too and I haven’t seen him all summer. In the afternoon, I got a call from an old law school pal, Melissa. (Ok, she’s not THAT old) who was in San Francisco for the weekend. She and her friend Paul stopped by for a while which was a nice surprise. I had not seen her in about three years. I used to head up our alma mater in Sacramento every year for the continuing legal education, and Melissa and I would spend the entire day yakking in the back of the room just like old times. My husband Steve, who was also in my law school class (dreamy, I know), does his continuing legal ed through his office. He had not seen Melissa since we graduated in 1985 and was very surprised when he returned home to find her sitting in the living room.

Melissa and I met in our first year of law school. We both spent many hours in the library. Before you remark on my dedication and studious nature, you should know that much of that time was spent in the library stairwell laughing and gossiping with Melissa. If not for that stairwell time, I very likely would have lost my mind. On the other hand, if I was actually studying all that time I would probably be on the Supreme Court today. Thanks A LOT Missy, you ruined my career.

Now back to Monday.

Friday, July 3, 2009


An old acquaintance of mine used to have the greatest sayings. I still use many of them and always get a reaction when I do. Perhaps my favorite of her sayings:

"Everything in my life sucks except my vacuum cleaner"

Today I can relate to part of that. Not everything sucks, by any means, but my vacuum does not suck. A busted vacuum is problematic when you have an 11 year old husky mix who leaves tufts of hair everywhere he goes and a child whose breathing difficulties are exacerbated by the presence of all the hair. I need to vacuum a lot! When I tried to vacuum yesterday the machine actually started SCREAMING. Now that will stop you in your tracks, I don't mind telling you.

There's a little vacuum store across the park and I actually loaded the thing into the car and took it over there only to find the store is closed for vacation until the 24th. (Closed for three weeks! I guess his business doesn't suck!) I left it in the car knowing that it would stay there until at least the 24th while I borrowed someone else's machine. If I bring it back into the house I will never remember to put it back in the car. Yes, I could just go buy another one but we really do try not to buy into the automatic replacement mentality. This can be fixed, I'm sure, and the machine will last another couple of years.

This morning I was up early so the night nurse could go home. By 7AM Maggie was dressed, fed, cathed and ready for action. No summer school today and dad's office is closed too. We waited for dad to stir so we could go do something, but that was not to be. About 8:30 I decided Maggie and I would just go out on our own and window shop on Chestnut street, a vibrant shopping area with yuppie stores and beautiful people. We drove through the Presidio and exited at Lombard Street. As I went a block out of the Presidio what do I spy but a vacuum repair shop and it's already opened for the day. Not only that, there is a PARKING PLACE right across the street. SCORE! I told Mag we had to detour for a minute. Maggie doesn't care - she is all about the journey, the destination does not matter. Vacuum store, Chestnut Street, whatever. We're out, we're having fun! (We should all adopt that attitude!)

Of course my good luck at happening upon the store and finding the parking place was not quite enough. This presented a logistical problem. How do I get everything into the store?

Do I dare leave Maggie in the car while I bring in the vacuum?
That thought left as fast as it came. She cannot be alone that long. That meant I had to get the wheelchair out of the car (which is a matter of pushing a couple of buttons and steering it down the ramp), push her across the street, leave her, run back across the street and unload the vacuum from the other side of the van and carry it across the street. All of this would have been easier if I was not talking to my sister on the cell phone at the time. (She had no idea what I was doing or she would have hung up on me.)

Maggie thought it was hilarious to watch me cross the street balancing the cell phone while the canister vacuum and hose kept crashing into my shin. Suddenly the man came flying out of the store and said let me get that, you watch your child. Maggie was laughing so hard that she was arching out of the chair. I think she scared the guy, who was very kind. I hung up the phone and focused on Maggie, the guy and the vacuum.

It seems that the vacuum needs a good cleaning - it's screaming because [it has worked hard and needs a vacation? no wait) something is wrapped around the motor. $40 will likely fix my problem. Cool.

We were just about finished when Maggie started gagging a bit. Nothing too bad, but all that laughing stirred her up and I had to suction. As I turned on the suction machine and cleared her trach I saw the guy just stop writing and look up. He seemed concerned.

I just said, don't worry, THIS vacuum works.

Thursday, July 2, 2009

Don't react!

Note - this is along post, but there is no way to break up this story.

Karl Malden died yesterday. He had a long life, living to 97 years old. My sister said he knew he could go yesterday because our adventures yesterday took us all over the Streets of San Francisco.

There is no quick way to describe the events of yesterday. We moved my aunt, an endeavor that should have taken about 2.5 hours – but it took over six. We did not count on the boys being towed off the freeway in a malfunctioning truck or on the series of events that followed.

I thought I was so thorough. We were meeting at 10AM. Maggie was in school until 12:30. The nurse would meet the bus and I had a helper for the nurse for Maggie’s first scheduled treatments. I KNEW I could be home by the second treatments at 3:00. Not even close. I was just about to head home across town to assist, knowing I would have to turn around and come back my aunt’s apartment. Fortunately, Steve went by the house and called to see where I was and I told him to cover Maggie. He said fine, but asked, “So when are you coming home.” With Maggie in good hands, I did not have to worry and could only answer honestly, “I have NO idea.”

The boys, my son Tim and my nephew Vinny left the assisted living facility in the loaded down truck just a minute after I left with the loaded van. We were moving across town and the fastest way to do that is the freeway. I looked for them in my rearview as I drove on the freeway but was not too worried when I did not see them. If they missed the lights that I made they would be 5 miles behind me. I arrived and unloaded what I could without help. I made a couple of trips up the elevator to my aunt’s downtown “deluxe apartment in the sky.” My aunt was already there with my mom and my sister Joan, (Vinny’s mom.)
Joan was buying sandwiches for everyone to enjoy after the unloading was complete. When Tim called to tell me the truck had sputtered out and they were stuck on the freeway I ran into the store to find Joan who was at the checkout. As I told her the story I realized everyone in Safeway was listening and all were concerned. These two young guys are stuck in the middle of the freeway interchange on a divider with a truckload of furniture and traffic zipping by at 65mph. It was not a good scene. Tim did not have his AAA card with him. (arrgh) I called AAA, explained the situation and gave my AAA number. Since Tim in on my account, it was no problem. The truck would be there in a few minutes.

Joan, the most suburban of all my sisters, jumped in my mom’s car and went to find the boys. I’m not sure what exactly she was going to do when she found them, but I was relieved when she went. By the time she saw them the AAA driver was there and through various cell phones, we determined where they would be towed. As our (continuing bad) luck would have it, the driver chose a place in a rather rough neighborhood.

Joan called me as she was exiting the freeway near the garage and we had the following conversation:

J: where are you?
Me: back in the apartment with mom and A.M. (our name for our aunt)
J: Ok ... DO NOT REACT to what I am about to tell you!
Me: (heart sinking, trying to appear calm): oooo kkkaaayy
J. I am getting off the freeway and there is a mattress on the exit ramp.
Me: unnnhhhh
J: What are the chances that is NOT A.M.’s mattress?
Me: (small voice) almost none

She stayed on the phone as she pulled off the freeway. There she found herself in some dicey surroundings. Day laborers surrounded her car seeing if she had work and seedy looking characters were hanging out on the street. She was panicking as she looked for the kids. She was close but did not know exactly where they were. Suddenly she said, “I can see the truck but I only see a box spring in the back.”

My heart sunk farther. The truck was broken, the boys had gone from one dangerous situation to another and my aunt’s mattress was very likely lying on the side of the road. I was careful not to say anything, though because both my mom and my aunt were very interested in my conversation. I thought I was being cool, but realized I was leaning against the wall with my head and rubbing my face in a concerned manner. Because neither my mom nor my aunt is stupid, they knew SOMETHING was up.

Joan’s rapid fire commentary continued . “I see the truck, I see the boys. They are fine. I cannot see the mattress, though. I am stuck at the light and I think every single person I see has a gun. They all have guns!” (Note: she could not see any guns but this very gritty city scene was freaking out my suburban sis). “I’m waiting for the light to change, wait I can see YES! The mattress is on the truck!”

The mattress on the freeway was NOT my aunt’s after all. Perhaps the tide was turning.

She put the boys in my mom’s car and sent them to us. Tim dutifully drove to my aunt’s place but had no idea whose car he was in or why, but he was past asking questions. Meanwhile Joan and her husband, who had arrived from the pleasant land of suburbia, dealt with the truck. It needs an alternator – nothing major, but enough to confirm that furniture was not arriving anytime soon and it could not stay on the open bed of that truck in a tough neighborhood. Finally, they rented a u-haul truck, reloaded all the furniture and drove downtown to the apartment. They saved the day.

We finished quickly once they arrived. My aunt was appreciative and very happy to see us all get out of her apartment. Tim and I headed home in the van while my mom went home in her car. Joan and family headed back to return the rental truck and have their truck towed to her father in law’s house. (I learned in a phone call later in the evening that tow truck #2 broke down en route and the third tow truck of the day came on the scene. It went from the ridiculous to the sublime.)

Maggie slept the entire afternoon and didn't miss me a bit. Meanwhile, Vinny missed a dental appointment and had to give away his shift at work, I missed a meeting in the evening. Tim climbed in bed at 6:30PM and slept for a couple of hours. All of us needed a hot bath and a break from the insanity. But my aunt is back home.

RIP Karl, we have these streets covered.

Wednesday, July 1, 2009

Independence Day

Today we are moving my aunt out of assisted living and back into her own place. My son Tim and my nephew Vinny will do the heavy lifting; I will wear the white hat and bark orders. (Funny how things work.) I cannot get back here in time to meet Maggie’s bus so the nurse and a helper will do that. I simply cannot be in two places at once.
There is a term for middle-aged people who have responsibilities for the generations above and below them. I believe it is called the sandwich syndrome or something similar. I have been living that for the past few months. I know there are people who live it in Technicolor every day and the taste I have had in the past few months cannot compare. I tip my hat to those of you juggling both.
As a mom, I have to tend to my kids. My boys need guidance and financial assistance, well within the normal limits for their respective ages. Maggie’s needs are extreme, of course. She needs full time around the clock attendant care as well as someone working full time to manage that care. Often times I fill both roles.
As a daughter, I have to tend to my parents. Except I really don’t because they don’t need it. I lost my dad a few years back, but I am lucky to have a vibrant independent mother who does not need any help. Even if she did, I have six siblings who will share the responsibilities. However, I do have an aunt for whom I am the point person and lately she has needed quite a bit of help. She asked me to do this and I am happy to oblige. I am not doing the day-to-day assistance; rather I am managing her assistance. She is appreciative, which makes it easier, but it is a lot of work. I have a feeling that is going to increase dramatically over the next few months as she tries to reclaim her independence.
I hope that this will be a successful exercise and my aunt will settle back into her life before her fall of a few months back. The physical injuries she sustained in that fall are healed, but these things take their tolls in other ways, especially in an older person. Every misstep is fraught with symbolism and can mean a piece of independence lost. I don’t blame her for wanting her own place back and I hope this transition goes smoothly. With my aunt’s consent, I hired a woman to cook, run errands, take her to the doctor etc, and (hopefully) help make it all work.
The assisted living place has been great. They do everything for her and all the residents and do it with a smile. They also charge through the nose, of course, but they are providing a wonderful service. Nevertheless, she hates it. To my aunt and many others, assisted living is the ultimate symbol of a loss of independence. It is the beginning of the end. Maybe I will change my mind when I get to be that age, but I do not see it that way at all. I think assisted living is actually fostering independence for many people.
Personally, I would LOVE to have my meals prepared, my laundry done and my room cleaned by smiling people. Of course, it would not be symbolic if I decided to live in a place like that. I would not be losing more independence every day; in fact, I would likely have a lot more free time.
I think I am going to open an assisted living facility for my generation with all the sandwiches you can eat. People would likely beat down the doors to get in. It would be a lot easier to take care of the generations above and below us if someone was taking care of us.