Wednesday, October 30, 2013

Sunday, October 27, 2013

An avoidable series of unfortunate events

Maggie's favorite outing is a trip to the Mall. And by the Mall, Maggie means Stonestown Galleria. Not target, not Union Square, not even Westfield Mall. She loves the familiarity of Stonestown. We basically walk the length of the mall upstairs and down and then come home. Maggie looks forward to this, in fact she starts telling me Friday afternoon and doesn't let up until we actually go sometime over the weekend. If we aren't going I let her know right away to avoid a meltdown but I promise her we will go the next week  We were so busy last weekend we never got to go, so the expectations for this weekend's trip were high.

Parking is always an adventure with Maggie, but we have pretty good luck in the underground parking lot at Stonestown. This time I actually checked around outside first. I was hoping to go to Trader Joe's and wanted to avoid carrying groceries and pushing the wheelchair back through the mall. There was nothing accessible outside, so we headed down to "our spot." The wheelchair spaces are in the back row behind the entrance to the elevator. Maggie and I always seem to get the same spot and yesterday was no exception. This mall trip was looking good.

I unloaded her from the car and put the ramp back. We walked around the elevators with a nice family with three little girls in soccer uniforms. They were shyly waving at Maggie and running ahead to get the door. That's when we saw this.

 The elevator was out of service. The mom of the little girls pointed to the other entrance, but I said "you guys go, but that's an escalator and it won't work for us." The mom looked stricken, the dad was aghast. The little girls were confused. Maggie was impatient. I was angry.

The dad said, "This is terrible. What are you going to do." I appreciated that he got how screwed up the situation was and said, "if it were up to me I would just go home, but I promised her, so I guess I'm walking up the auto ramp."

This happened to us once before and I did just turn around and leave. But I couldn't do that to Maggie. I looked around for any other elevator, but found nothing. I went into the gym that opens into the garage, but they did not have an elevator. Having no choice, I started pushing Maggie up the steep auto ramp. That loaded chair is well over 200 lbs and uphill is no small feat. The car behind me must have been irritated, though not nearly as much as I was, but to his credit,  he did not honk the horn or peal around us.

Once up the ramp, we are on the far side of the parking lot away from the entrance to the mall. I pushed her back across the parking lot and had to go way past the entrance to find a curb cut. We backtracked to the entrance where I found the security guard (Paul Blart, Mall Cop). I told him our predicament and for some reason he found it amusing. I did not share his viewpoint. He laughed when I told him I came up the auto ramp saying "Ohhh you were waaaay off." REALLY, Dude? Really? He directed me to another elevator near the mall offices. I figured maybe it was time to visit the mall offices. I did suggest to him that a sign downstairs would be very helpful to others in this situation.

We went into Macy's, took their elevator upstairs and started to head to the mall offices. Oops, can't go that way, there are stairs. I went around to the ramp on the other side and doubled back. Of course, it is Saturday and the offices were closed. Again, REALLY? There are probably 5000 people in that mall and the offices are closed. The sign said we could get 24 hour security help, but I had already dealt with security. In fact he was part of the reason I was there. At least I found the freight elevator the guy told me about.

We did our thing and made our way back to that elevator. When it opened on "B" I was trying to figure out where we were. I stepped out of the elevator and the doors closed behind us. Of course we were not in the garage at all, but behind the mall in another outside parking lot/freight area. I was further from my goal than ever. We waited at least 5 minutes for the elevator to return, went back to the main area of the mall to find Paul Blart, but he was nowhere to be found. I called the number for security and a woman started to direct me to those same elevators. I told her that would not work.

At this point I am getting more than impatient. I knew I could walk back down the auto ramp, but it is just too steep and I really really did not want to do that. I became (shall we say) insistent with her. She finally realized what I was saying and said, "Oh you need Freight elevator #5." Really? There are FIVE of them?

At her direction I went into the deepest bowels of the mall and eventually found Freight elevator # 5 and proceeded downstairs to the car. To my surprise, I was only about 20 yards from the broken elevator. How could I have missed it? Maybe it was the giant sign on the door that says DO NOT ENTER. AUTHORIZED PERSONNEL ONLY. How silly of me. Why wouldn't I assume that was the way we were supposed to go.  E X H A L E.

When I got home I went on the Mall's website to give them "feedback". I wrote an impassioned letter noting how often we visit Stonestown and if we didn't know our way around who would? I mentioned that a single sign directing people could have prevented the entire series of unfortunate events. I also suggested a little sensitivity training and perhaps some mall orientation for the laughing security guard who gave us incorrect information.

The feedback did not go through because their website was not working.  REALLY? Undeterred, i googled the name of the general manager of the mall and his email popped up. I sent my letter directly to him. That email came back undeliverable.  I'm starting to understand why things are so screwed up there. I gave up and wrote this.

 I cannot wait for Maggie to ask to go back to the Mall. After a lifetime of hanging out at that Mall, I think it might be time for a change. I'm just not sure how I will convince Maggie of this.

Saturday, October 26, 2013

Shaking out the cobwebs

This week was a bit of a blur. It's not that it was particularly eventful or anything; Maggie went to school and came home and the nurses came and went. I did my usual 7000 loads of laundry, dutifully folding each load as it emerged from the dryer, trying to keep that downstairs room clean after Tim and I cleaned it out last week. But all that was done in 3 days instead of 5 as I was laid out sick with a fast moving virus all day Wednesday and Thursday I still sound like someone is holding my nose when I speak, but I feel better.

It started with Tim on Sunday. He had a fever and couldn't get out of bed all day. He was sneezing a lot on Saturday as we cleaned, but I assumed it was all the dust down there. He was down Sunday through Tuesday. he slept so much i was ready to get him checked for pneumonia. Tuesday I felt like someone had punched my in the jaw. I mentioned that to Tim and he said, well, that's how it started with me. Naah. I never get sick. Then Wednesday it hit me. At first I thought it was allergies too. At 8:00 AM I called the hospital and left a message saying I didn't know if I should come in. For some strange reason, they don't want sick people working in a children's hospital. Go figure.  I felt fine, but sounded terrible. By 9:30 I knew I was actually sick and confirmed the cancellation. By 11:00AM I was sick as a dog. I didn't meet Maggie's bus on Wednesday afternoon and did not take her out to the bus on Thursday morning. In fact I didn't even wake up until 11:00 AM on Thursday, something I haven't done since college. By Friday it was over. I went back to work at the hospital a bit nasally and suffering from a head cold hangover.

Now I am hoping and praying that Maggie doesn't get it. I think back to her sudden serious illness a few weeks ago and wonder if maybe she already did. I hope so, because I cannot imagine how this one would present on Ms. Maggie. Right now she's fine. In fact she is banging on her tray and repeating "Mom, I want my breakfast now" on her talker over and over. Charming.

I better hop to.

Monday, October 21, 2013

Run run run as fast as you can.

Busy weekend around these parts. Dinner with family on Friday night, breaking in the new target store that just opened on Saturday and then spending 4 hours cleaning out the downstairs room with Tim. It looks a thousand times better, but we have waaay too much crap.

Yesterday Steve and I took Maggie to watch the Nike Women's Marathon trail through the fantastic Seacliff neighborhood. My sisters Ellen and Joan came down from Sonoma county too. Maggie's cousin Colleen was running the half marathon and we told her we would be out there at about the 8 mile mark. Her cousin Clare may have also run. She volunteered for the event and was likely given a bib to run, but we never found her.

 I chose that point thinking I could easily park with Maggie and there wouldn't be a lot of people somewhere in the middle of the course. I was wrong on both counts. The neighborhood was FULL of people cheering and ringing bells and carrying signs. I couldn't find a place to park and finally pulled right up to the barricades that was closing off one of the streets and parked there. A man pulled up next to me and asked if it was OK to park there. I shrugged and said, "It's OK with me." He laughed and parked next to me. Safety in numbers. (and no we did NOT get a ticket!)

There were thousands of runners. Thousands of women. Like 30,000.  If I had to estimate, I would say there was one man for every 50 women. It was really quite amazing. It was 7:30 in the morning and there was this incredible energy in the air and on the streets. I had to keep pulling Maggie back out of the way as the throng of runners just kept coming and coming. I figured if a runner crashed into Maggie's chair, Maggie would be alright, but the runner would really be hurt.

We watched and yelled and cheered and got caught up in the energy of the day. Maggie and I made a sign on Saturday night that said Team Colleen and we waved that around At least three different runners named Colleen appreciated that before we found our Colleen.  Someone from the Kaiser Permanente group gave  Maggie a pom pom and she was into it.

It was great. Then I saw a woman running in a shirt that said simply  "Boston Strong" and I felt my eyes well up with tears. It was shocking to realize (again) how something as pure and wholesome as a marathon could have been the sight of so much carnage and horror. Now I have to root for Boston in the World Series.

We were delighted when we saw Colleen trotting up the hill. Thanks to the beauty of texting, she knew exactly where we were and I told her to come up the left side, so she ran right into Ellen's arms. She hugged every single one of us, stopped for a picture and headed on her way.

We went back to our illegally parked car and realized how freaking cold we all were. Ellen and Joan headed north and Steve and Maggie and I went home and drank tea.

Colleen kept running.

Wednesday, October 16, 2013

For Owen and August and Kerry and so many others

 People who don't live in this world make assumptions and conclusions about our life which are often incorrect.  These assumptions are generally not unkind, just uninformed. There are those who think our days are nothing but drudgery and sadness, but that is simply not the case. Yes it is hard work and yes it is every day, but those days are also filled with joy and laughter.  That is part of the reason I write this, I try to share some of the joy of living in Maggie's World.

Thanks to the wonders of the internet and the universe in general, parents of disabled children have many opportunities to connect and share their experiences, good and bad. Because of Maggie, I have friends all over the country and in other countries. Some I know quite well, others I have never met. But, we are connected. As my friend Elizabeth said in this post yesterday, "We are all connected. All the time." That connection frequently amazes and strengthens me, and I don't acknowledge it often enough.

But there are a few realities of this world that can be extremely difficult. One of those realities is that disabled  children often don't survive as long as their non disabled peers. Maggie has lost several friends over the years. I hesitate to name them for fear I will leave someone out. But we remember Isa, Rachel, Isabelle, Michael, Lueza, Michele, Elvis and others. We remember you and we miss you. Now there are more names to add to that list.

On Monday I saw that a six year old boy named Owen passed away in Seattle. I didn't know Owen, but I have corresponded with him mom for a couple of years now. Then I read Elizabeths' post about three year old Kerry who I did not know.  Then yesterday it was August, who was 14 and lived in Florida. I did know August when he was a baby  and reconnected with his mom several years ago quite by chance.  (Maggie World: Chance encounters) Three children in 24 hours. Three families devastated.  And reverberations felt throughout the interconnected special needs community.

As if losing their children wasn't hard enough, there will still be the well meaning but ignorant people who make comments that increase the pain. Comments like "it's for the best"  or "how were they going to care for her" or, worst of all, "now they can have their life back" are so very painful. They minimize the loss and remove the humanity from both the child who passed away and the families' pain and grief. Their life included their child, the same as every other parent.

A child may have special needs that set them apart from other children, but the parents love and grief is the same as that of every other parent. It is unimaginable to lose a child. Any child. Every child.

I grieve for each of these children and ache for their parents. I am so honored to be a part of this connected community and hope each family feels the love and support from our network.

We are all connected. All the time.


I have posted this article once before. It is called "A Life Beyond Reason". It was written three years ago by Chris Gabbard, August's father. It is a scholarly and loving essay about being a parent of a disabled child. It is a wonderful piece and I recommend it highly.

Tuesday, October 15, 2013

Chew on this for a while.

Recently I rediscovered Grape Nuts cereal. I forgot how delicious it is and how very very long it takes to finish a bowl. Each spoonful requires a lot of chewing. One of the upsides of this: you can get a lot done while you eat breakfast.

Sunday morning I was chewing and chewing and hanging with Maggie. She was bored at my long periods of silence. (No talking with your mouth full!). A bored Maggie is not a good thing. When she is bored she frequently starts pulling on her trach ties. It's a bit disconcerting to say the least.

This activity is discouraged at every turn. Maggie can pull out or break the tube very easily - and has done so dozens of times. A broken or dislodged tube sends us all into a flurry of activity. We have to work fast to get the new tube in before she gets into trouble with her breathing. Even if she doesn't break it or pull it out, the constant tugging on the ties loosens the whole thing making it more likely to fall out at a later time.

As I chewed I inspected her trach ties. They were extremely loose. Perhaps the nurses had also noticed this because someone had done 7 or 8 knots in the ends. Tying additional knots will prevent Maggie from undoing the ties (which she has done on occasion) but it does not do anything about the looseness of the tube. I figured I could re-tie it while I finished my cereal.

Retying the trach while Maggie is in the chair is difficult because the headrest on her wheelchair is in the way. Initially, Steve came over to hold her head forward while I worked but it was going to take too long because there were so many knots and some of them were really tight. We put her back in the headrest and I went to get the tools to loosen the knots and scissors to cut off the long ends once it was re-tied.

When I couldn't get a knot out, Steve, the fly tying fly fisherman would step in.

Then I got into a rhythm. Take a bite of cereal, undo a knot while I chewed. When I looked and saw my "still life with Grape Nuts and trach tools,"  I marveled at the absurdity of our life and I  wondered if everyone was this efficient while they ate Grape Nuts.

Funny, I've never seen this on the commercials.

Friday, October 11, 2013

A Rose by any other name

This a a picture of my grandmother, Rose Fitzpatrick Casey. I never met her, she died 19 years before she was born. I think Maggie looks a bit like her. And today she is looking for her as well. 

Maggie is completing an assignment today; but it was not assigned by her own teacher, rather by her Uncle Pat who also happens to be a teacher. Maggie and her classmates have an appointment at the Mission high Museum today so she can do her best to complete the assignment.

This all started a few weeks ago when my brother Pat asked me if I knew where our grandmother Rose Fitzpatrick Casey had gone to high school. Pat has a lot of the family documents (such as they are) but nothing that answered this question. Because of presentations I did at a couple of family reunions, I know a lot of family history, but I didn't know the answer to this question either. Most of my knowledge and the documents involve the Casey's, the paternal side of the family, not the Fitzpatricks on the maternal side.

Pat had already checked with my mom and she didn't know. Her mother Rose died in 1937 when my mom was just a little girl. Her older siblings likely knew, but the last of her siblings died earlier this year. We were sad to realize that meant there as no one left to ask. Naturally that also meant we HAD TO KNOW.

There weren't very many high schools in San Francisco at that time and the one that was full of the Irish was none other than Mission High, the very school Maggie attends today. We know Rose younger siblings Joe and Alice went to Mission, so it is likely that she did as well. Since we have our very own Mission High student, Maggie was the logical one to take this on.

Fortunately, Mission High has a museum. This school recognizes its place in San Francisco history and has taken care to preserve it. I love that.   There is a wrinkle, though. Rose was born in 1891, which means she would have been in high school in 1906, when the great Fire and Earthquake rocked San Francisco. It is likely her education was interrupted by that event and it is possible that records were destroyed. Maggie is on the job and I hope they find something.

I would venture to guess that if she is successful, Maggie will be the only student at the school who can claim a connection from 100+ years ago. It just doesn't happen anywhere very often and especially in this city, which has always been a mecca for newcomers. Mission High has long been a school for the newest populations. In the early 1900's those newcomers were the Irish, like Rose Fitzpatrick. Today Mission is full of students from dozens of countries, who speak numerous different languages. That's part of what makes it so interesting, but also makes it far less likely that anyone else has a great grandmother that went there.

As I sit here typing this, Maggie is doing her thing, digging through the archives. I do hope she has help or those precious historical records will be strewn all over the place.

Stay tuned.

Rose on her wedding day to my grandfather John Casey. She made her own dress. That's her sister Sara behind her and I'm not sure who the best man is.

don't you think they look a bit alike?


Monday, October 7, 2013

Back in the pink(ish)

It was a long and worrisome five days but Maggie is feeling better and returned to school today. She still needs a little oxygen to keep her oxygen saturation levels up, but she is getting there.

You can see she was pretty happy while waiting for the bus this am

We now return to our regularly scheded programming   

Thursday, October 3, 2013

X Ray Vision

My brief foray to Tahoe was great. It was relaxing and beautiful and a good opportunity to recharge my batteries. Good thing I did, too. We were about halfway through the 4 hour trip home when I received a phone call that Maggie had a fever. Hmmm. Maggie never gets fevers. She must really be sick.

As soon as I go home I could see that Maggie didn't feel well. The nurse had already given her Tylenol, so the fever was down, but Maggie was peaked and anxious. We couldn't get an accurate oxygen saturation reading because she was moving so much. I assumed that meant she needed oxygen so we turned it on and that helped a bit. She had an OK night, but I knew she needed to be seen by a doctor. When someone looks like this, they are pretty sick.

We went to the doctor, who talked about putting her in the hospital, then to the hospital for tests, then to the pharmacy for drugs etc. In between those trips there were at least 8 phone calls and emails to various doctors. She has some sort of respiratory issue that is not defined. Could be a slight pneumonia, could be atelectasis (partial lung collapse) and she also has a Urinary tract infection. Bad combo. Makes for an uncomfortable and unhappy Maggie. She needs oxygen and she is on antibiotics, so I am hoping things improve today.

 I am happily out of practice caring for a sick Maggie. She has been so healthy over the past year or so that we have been maintaining her health, which is a ton of work, but pales in comparison to the runaround and concern when she is ill. It didn't help that the runaround yesterday was far more complicated than it needed to be. Getting the chest xray added insult to illness.

It is NEVER easy to get a chest xray on Maggie. (I've written about it several times in the past) Maggie cannot get her body into the necessary positions to get a good picture. Generally one stands in front of the screen or sits on a stool. Maggie can't do either of those things. We can do it in her chair, but only after I remove the tray and the pole and the dynavox, take off the sides of the chair, flip back the laterals and the headrest and take off the straps. Of course then she is fastened only at the hips and I cannot let go of her for a second or she will be dangling by the groin straps.  It is labor intensive and very physical, but I know how to do it and can have it all done in about 3 minutes.

Of course one has to get OUT of the waiting room and into the xray room to accomplish all that. That can be more difficult than getting the xray. When they see Maggie arrive, they know it will be a lot more work for them (though really it's me) and there are immediately barricades in place. Yesterday they used the delay tactic, perhaps hoping we would give up and go home. But we all know that's never going to happen

When we checked in there was one person in front of us. I was relieved, because I needed to get Maggie home and into bed. That person was called and another family arrived. The other family was called as three others arrived. Now it's been 20 minutes. All three of those people went before us and I finally spoke up. There is always the fear that we weren't entered into the system or something.

I inquired very politely why all these people who arrived after us were going in while we were waiting 35 minutes. The woman asked my name and I said McDonald. She gave me some attitude and said, "don't worry, you're next." OK. Properly chastised I returned to my seat and gave a wan smile to another mom sitting there with her 12 year old daughter. I told her "it's the wheelchair. No one wants to deal with it so they put us to the bottom of the pile" Amazingly she said, "I know, my daughter used to be in one and it happened all the time." I said, "I do so hate to inconvenience health care workers with my daughter's medical needs." The mom laughed and so did the 12 year old.  We all bonded at that moment.

Them someone called Maggie's name and when I stood up she looked at the wheelchair and said, "oh, you need to wait here we have two more people in front of her and if she doesn't need to change (which she did not) then you can wait here." OK. Progress, I guess. Then they called the 12 year old girl with whom I had just bonded. The mom looked at me sort of  helplessly and I started to laugh. I said, "just go, you paid your dues. Besides,  they have to take us sooner or later."

Finally a full 45 minutes after we arrived,  they came to get Maggie. The mysterious people who were in front of us never materialized and we found ourselves talking to the nice mom again. Her daughter was just finishing up and we went in after her. There was absolutely no reason at all that Maggie had to wait. It was just a game of pass the buck until they couldn't pass it any longer.

The woman who had gently chastised me was the tech. I said nothing. It was time to just get this done. Maggie was getting hotter by the minute. She asked if I was going to remain in the room, and I said, simply. "You will need me to hold her." I removed all of the supporting pieces of the chair, put foam behind Maggie's head and held her arms above her head so they could get their picture.  I donned one of those lead aprons that weigh about 20 pounds and the xrays were completed.

As I started to put things back together the tech said nicely, "Please take your time. And thank you for your help."Again, I said nothing. It just seemed wiser. She was offering an apology of sorts because she knows I saw through the subterfuge.

It's called xray vision.