Thanksgiving

It's Thanksgiving eve and I'm about to make stuffing. I started out November swearing to list something I am thankful for every day. I failed miserably at keeping the list, but the thankfulness is there nonetheless.

I am thankful Maggie is healthy today and pray she will stay that way for a while.
I am thankful for my husband and his strange sense of humor.
I am thankful Tim just called me and he is 1/2 way home and was out of the snowy, icy mountains before dark
I am thankful Eddie is about to graduate from college and has unlimited opportunity at his feet.
I am thankful that Eddie is spending Thanksgiving with his girlfriend Grace, even though I will miss having him here.
I am thankful I live where "cold" is 48 degrees
I am thankful for my friends from all different parts of my life.
I am thankful for my sisters, brothers and their families.
I am thankful for my mom.
I am thankful I had my dad for so long and miss him very much.
I am thankful for my brave father in law facing the first holidays after losing my mother in law.
I am thankful for the nurses in the house who allow me to live at least a semblance of a normal life
I am actually thankful my life isn't that normal so I can be thankful for the smallest things.
...and I'm thankful the turkey fits in the pan

Happy Thanksgiving all!

Have a Seat

Finally checking back in after several days of feelin’ poorly and not posting. Friday I snuck off to Monterey with two of my sisters, despite feeling less than 100%. That was fun, but I overdid it and felt worse when I returned.  It was totally worth it.We spent the day laughing our heads off, driving to beautiful Monterey and visiting my niece Bridget. It was a real day off for me. I was gone for 11 hours and it felt like a week’s vacation.  Nurse Josephine was here to meet Maggie’s bus when she arrived from school. Those two have a great time together so Maggie was not even mad at me when I returned. (If I am gone for a change of shift, Maggie really gets “mad” at me.)  I had to go to bed not long after arriving, though because I was exhausted, so she spent the rest of the evening with Steve.

On Saturday, I decided not to be sick anymore and just went about my day. That caught up with me by the end of the day.  We need a new chair for the nurses to use in Maggie’s room. The one that‘s in there is shot. This is not an easy task. It is difficult to find the right chair because it has to fill so many requirements at once. It has to be sturdy and comfortable but it cannot be too big because space is at a premium.  This chair will be in use 16 hours a day with people of various shapes and sizes getting up and down constantly. Because of the configuration of the room, this chair will have to be able to sustain numerous hits from the wheelchair, which means it should be upholstered, not wooden so the dings will not show. Finally, the night nurses need to be able to put their feet up and relax a bit when Maggie is snoozing, but there is no room for an ottoman. We have had a slim recliner in there for years; that seems to be the only thing that fits the bill. They wear out, though and need replacing every few years.  

 I saw an ad for a sale at the lazy boy store and went for a ride to South City to check it out. South San Francisco is not very far away but it takes a long time to get there from here. There are lots of signals and slow going, but eventually I arrived and started testing chairs.

Let me give you some advice. When you are physically worn out and pretending not to be sick, do not go test recliners. Every single one of them is so comfortable; it was all I could do not to fall asleep.   I decided that was like grocery shopping when hungry and left the store without making a purchase.

It's a good thing I didn't see this one, though. In addition to whatever physical bug I'm fighting, I'm still not over World Series Fever.

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November Thankfuls

November 5 – for my sisters, for the beautiful California coastline and for clam chowder

November 6 - for recliner stores, afternoon naps and for young enthusiastic nurses who want to care for Maggie

November 7 – that Tim arrived home safely at midnight and will be here until tomorrow.

Thanksgiving 2009

Hello and happy Thanksgiving eve! I've beeen absent all week with good reason. Either I was away or just too busy to sit down and write.

After my quick (and very moving) trip to Anaheim on Friday I was home for less than 24 hours. I went to VEGAS with my sister Joan from 11:00PM Friday night until Monday morning. I did not win any money, in fact I lost. My lucky sister apparently won the money I lost. Next time I'm just going to write her a check and skip the trip.

I returned just after Maggie came home from school Monday and really got the cold shoulder from her. How DARE I consider taking a break. She's over it now and we're friends again.

When I got Maggie off to school on Tuesday morning I went straight to the super market. Tomorrow I'm having 17 for Thanksgiving dinner and at that point had purchased only the sweet potatoes. I was getting a bit nervous about everythign I had to do. Now that the refrigerator is full to bursting, I feel better.

Today Maggie is off school and I cannot spend any time on the computer or she gets mad. I guess I owe her some undivided attention. (The nurse just arrived, so I snuck away for a quick post).

I will be back after this Thanksgiving hubbub dies down. In the meantime I wish everyone the best Thanksgiving. I hope you are surrounded by family and/or friends and have a feast.

Thankful: I'm behind on these. I'm thankful for the following:

• a beautiful clear day in late November,
• getting a break,
• my sister Joan's joie de vivre
• my understanding husband who picked up the slack
• all of you who read about my life

I'm also thankful that

• Maggie missed me but still forgave me for leaving
• Eddie will be home later today
• Tim is here
• we will all be together with Steve's entire family
• I can pop in at my mom's house and say hello to (most of) my extended family
• and that the best Turkeys' in the world are sold at a store two blocks from here. I just walked over there with my old lady shopping cart and strolled home with a 23lb bird.

Cold with a chance of damage

It's a cold morning. Deceptively so because it is beautiful and clear. In fact I highly recommend sleeves. That recommendation comes from experience. I dropped the van off at 7:30 AM to determine the source of the troubling noise. The gas station is about a mile from here and Brisco and I walked home together. I am wearing a fleece vest and a long sleeved t-shirt. My arms are freezing.

The noise in the van is directly related to the loud clunk I heard as I hit a manhole cover last week. Maggie was with me in the car and we were driving through an area that was getting re-paved. There was no pavement and the lanes were set by cones. I went very slowly because it was tricky. Good thing. I didn't realize that without pavement the manhole cover was sticking up several inches. My van is lowered to accommodate the wheelchair lift.

All of a sudden - wham! there was a huge noise right beneath Maggie's wheelchair. She thought that was HILARIOUS. She was laughing so hard she was straining her body. I thought she was going to break through the harness on her wheelchair.

I didn't hear any problem initially, so we just kept on truckin. Over the next several days I noticed a noise emanating from the rear right tire when I started and stopped. Hopefully it's as simple as a shock absorber, but that takes the kind of luck that generally eludes me. I probably messed up the suspension. I have visions of the car getting worse and worse until the wheel just falls off while on the freeway. Hence it was time to get it checked out. I will know soon enough.

In the meantime I walk. Keep a good thought that whatever this problem is it's not too expensive.

Today I'm thankful for long sleeves on a cold day and for pavement. Ok, I'm a city girl, so I'm always thankful for pavement, but today more so because of the dangers it hides.

In case I freaked anyone out, I want you to know I am home safe from my trip to Sacramento.

Gratitude: today I'm thankful that I don't have to wake up in the middle of EVERY night and also thankful that I do not have to drive that far very often.

Feliz Cumpleanos

There was a party on Friday afternoon in Maggie’s classroom and I was invited. It was Juan’s 18th birthday. Juan is Maggie’s “boyfriend.” He has significant disabilities himself, but he uses what he has to his advantage. He is the only one in the class who can walk, so he is able to position himself next to Maggie all the time.

Juan is unable to speak and uses a dynavox as well. He does not need the buttons like Maggie does, but just uses the communication device directly. When Maggie wants to talk, she hits one switch to move the “cursor” to the thing she wants to say and, once there, uses the other switch to actually say it. When Maggie gets going, she can fly through the screens and selections to say exactly what she wants. When she is not in the mood, she just sits there smiling as if to say, “You know what I want, just do it.” Juan will have none of that. He takes her hand and hits the button with it as if to say, “C’mon, get with it.” Maggie responds to him.

Maggie did not need any prompting on Friday, though. I programmed her talker so that she could say "Happy Birthday Juan" in spanish, which is the language Juan's family speaks at home. It's simply Feliz Cumpleanos. However, that took a while becaue the dynavox doesn't recognize spanish words and I had to spell them phonetically. I believe I entered it "Felleez coompleeaanyos." He loved the message and so did his mom. (Maggie's making points with the mother.)

There are six kids in Maggie’s class and I assumed the party would be those students, the adults in the class and a couple of parents. I arranged my day to get to Juan’s party at 1:00PM, just as it was beginning. Or so I thought. When I arrived at 1:05, there were at least 25 people in the room. Juan made invitations on the computer in the classroom the day before and went all over the school distributing them. Even the principal stopped by. It was a happy group of people.

Juan was decked out in a suit and tie, and he looked marvelous. He greeted each person, including me, with a big hug. When the noise became too much for him he put on his headphones for a few minutes until he was ready to deal with it again. He is a man who knows how to handle himself.

I did get one picture of Maggie and Juan with my phone. However, I missed the best part. I received an important call and stepped out of the room for a minute. While I was gone, Juan was dancing with Maggie, holding her hand and twirling her around in the wheelchair. The teacher and nurse were looking for me, but I was in the hallway. Of course, it happens the minute I step out.


Then again, maybe it is no coincidence. Juan saw the old lady was gone and made his move.


Gratitude: I am thankful Maggie has such wonderful people around her. In all honestly, I am also thankful Maggie is not 18 yet.

Father Doughnut

Early Saturday morning I had an errand to run. No one else was awake yet, so Maggie came along for the ride. We had to drop something off before our friend took off for the day. By 7:30 we were on our way home. I decided to stop at the grocery store.

Maggie loves it, but she does not get to go to the grocery store very often. I’ve mentioned before how much of a spectacle we are. I have to push the wheelchair and pull the grocery cart. We are a train chugging around the aisles. Early Saturday is the perfect time because the store isn’t crowded. Driving that train through packed aisles is impossible. Other shoppers are quite taken aback at the sight of us. Many are overly helpful. I get an almost pleading, “Can I DO something for you” to which I respond (overly cheerfully),” Nope, just grabbing a gallon of milk.” The fewer people in the store, the fewer conversations and the easier to get around.

I was just about finished when I decided to bring home some doughnuts for breakfast. As I neared the bakery department a priest entered the store. I presumed he was a Catholic priest because he had on the black suit and the collar. He was probably in his 60’s, tall and thin and carried himself in a very regal manner. He took in the scene with our little train and gestured – something between a nod and a bow. Anyone who’s spent any time around a priest will know the move. I smiled at continued my trek toward the bakery.

The doughnuts are in a free standing case for self service. As I moved toward that the priest was standing in front of me, looking me in the eye and pointing at me. I wondered if I knew him. I was raised in this neighborhood and know people connected with all the parishes around there. Nope, his face was not familiar. Then he spoke. In a thick Russian accent he said “Got ez tadusteeng gyu” Say what now? It was almost accusatory. He said it again, and I realized he was saying “God is trusting you.”

Oh, ok, thanks.

Don't get me wrong; it's nice, but it's freaky.


He approached and took Maggie’s face in her hands and said some prayer. The look in her face was priceless. Her eyebrows were knit together and she was frowning at him. I tried not to laugh. He looked up again and said “God is trusting you” again. I smiled thinly and he walked away.

I looked down at Maggie and said, “Well, if God is trusting me, I better not steal these donuts.”

Today's gratitude: I'm thankful for the free coffee my son gets every week working at Starbucks.I'm particularly thankful for the Verona blend.

Happy Veteran's Day

Today I'm thankful for veterans.

Get your hankies out and watch this clip. YOu'll be thankful too

http://www.youtube.com/watch?v=Kpohfny7jWg&feature=player_embedded

Happy Veteran's Day

It's not a gang, it's a club

Maggie has many friends in wheelchairs or other assisted devices. It makes sense, these are her peers. Some of the more involved kids like Maggie have been in the same programs all their lives so we know the families pretty well. Other kids have moved ahead in their education and their social lives, but because we knew them when they were little and have stayed friendly with their parent(s) the kids still see each other.

Whenever I get together with the parents of disabled kids I am astounded by the similarities we have as parents despite the many different types of disabilities our children face. One of the biggest similarities is the isolation that both we and our children face. Everyone wants to be recognized for their individuality, but I have a news flash. It's good to be part of a group too.

Though I am blessed to have a large family and many friends, this particular group of people play a role that no one else can. They listen with interest when I brag about Maggie being able to make a yes/no sign or reach her hand out to get something. They don't smile pitifully, they rejoice. And they know I do the same for them.

Today I am thankful for those friends and their remarkable children.

Fire one..Fire two

Yesterday there were two heart-stopping moments with my darling teenage girl. I had plans to go out for about two hours. Maggie's two events were just before I went out and right after I came home. I love how she waits for me.

Around dinnertime, I was just getting ready to go meet a friend of mine whose daughter has extensive disabilities as Maggie does. I am very lucky to have a group of parents with whom I can connect. Maggie was in her bed and the nurse was just lowering the side of the bed so that we could catheterize her together before I went out. Maggie’s bed is high. The mattress is just below chest level for me. It is perfect because Maggie can be safe and the caregivers do not have to bend over constantly to tend to her needs. The side of the bed simply folds down like a flap so that it is against the bed when it is down. You have to stand back for just a second to give it room to come down.

I was standing at the head of the bed while the nurse lowered the side. We have done this a million times and it is just automatic. When the side was at about 90 degrees, Maggie moved unexpectedly and rolled right onto the outstretched wooden side. The nurse was holding this with one hand when it suddenly became 65 lbs heavier. I screeched and lurched for Maggie and lifted her right back on to the mattress without incident. Maggie looked surprised and we both looked frightened. Fely, the nurse, remained professional. She never reacted at all. I do not know how she held that thing in place but she did. Crises averted, but it is a good thing there were two people there.

I went to dinner knowing that Steve and Tim would be home a few minutes later. All was well. When I got home, Maggie was wide-awake in her bed throwing pillows and anything else she could find. I talked to her for a while and then sat and talked with Steve.

The nurse was coming in from Maggie’s bathroom and I suddenly heard the nurses alarmed voice calling “SALLY! SALLY! SALLY!” I was in there in one step. Her trach tube was out and sitting on her chest. HOLY MOLEY! This time the nurse was panicking and I was just quickly getting a new one in. We keep a supply of clean trach tubes taped to the head of her bed. The rule of thumb is to keep the correct size tube and one smaller in case there is difficulty getting a new one in. You have to move quickly so that she doesn’t get into respiratory distress. (Note: the ostomy (opening) contracts quickly). Maggie was fine, in fact, she was grinning like a Cheshire cat. She loves to make everyone jump.

We have to change her trach tube every week. There are many times that Maggie has broken the tube because she is constantly pulling on the ties. She even does it in her sleep (see picture - note the knot is on the opposite side from where she is pulling).The flange gives way and we have to jump to change it. I presumed that’s what happened this time, but no. Steve looked at it and said, "it’s not broken, she unknotted it." Apparently, while the nurse was in the bathroom and I was out of the room Maggie was bored and went to work on the ties that hold her trach in place. The trach ties are triple knotted to prevent this, but Maggie is very persistent. She was probably working on that for hours whenever she was alone.

Because of the advances in the world, many (most) trach users have Velcro ties. I laughed at that knowing that would not even present a challenge for Maggie. Now she can get triple knots out. Great. I am going to have to get out my Girl Scout manual and find some new knots.

I am meeting other friends for dinner this evening. I think I will sneak out and sneak back in.

Today's gratitude: I'm thankful for many circles of friends

Just park the car...

I live in a city that has more cars than places to put them. That means parking in San Francisco is often a competitive sport. People think we have it easier because we have a handicapped parking placard. That only works if Maggie is with me in the car and I never use it when she is not. One, it’s not right and two, the fines are CRAZY – like $750 or something. Out here in “the avenues” where I live, parking is not that bad, at least during the day. Nighttime is a different story, though. It is not unusual to circle for 20 minutes looking for parking.

We have two cars and we have a house that has a garage for one car and a driveway for the other. Theoretically. We cannot really use the garage to park a vehicle because we need to get the wheelchair through the garage to the elevator in the backyard. There isn’t room for both. Because of that, the garage has slowly filled up with stuff. It is ridiculous and out of control. I have to fight to keep a path wide enough for the chair to get through. It would not surprise me if Oprah showed up to expose this so that the viewing public could marvel at how strange this is and blame our behavior on the stress of having a disabled child. Actually, we just have too much junk.

Even without a spot in the garage, we still have the driveway, right? Well, not really. We leave the driveway open for the night nurse because it is impossible to find parking at 11:00PM. Now we cannot use it during the day much either. Recently, the City made our street a two-hour parking zone. Because we are residents, we have a permit that allows us to park on the street all day. The permit, a sticker on the bumper cost a lot, but far less than the inevitable parking tickets I would get. The school nurse brings her car here and rides the bus with Maggie. Her car is here all day every school day. Now I give her the driveway during the day so she won’t be ticketed every single day. That means I have free rein to use my driveway from 3PM until 11:00PM every day. However, I had better get the car parked on the street before 11:00PM or I can plan to spend 20 minutes searching.

On top of this constant dance, there is street cleaning. You cannot legally park your car on the side of the street being cleaned on certain days. On our side of the street, it’s the first and third Tuesdays from 8-10 AM. On the other side, it’s the first and third Thursdays. It used to be every week, which was actually easier to remember. Now I feel like I have to consult a sundial and a calendar to determine whether I have to move the car. In October, there were five Thursdays but only four Tuesdays. It is too much information to process. We have to pay $53 a pop when we forget, which is definitely several times a year. Inevitably, I hear the street cleaner coming and yell, “Where are the Cars?” but by that time, it’s too late. The parking ticket people come before the street cleaner. Perhaps today I will pay for the ticket we got two weeks ago.

The picture is of the parking signs on our street. There's my van with the obligatory sticker on the rear bumper and the nurses van sticking out of my driveway.

Today is the first Thursday and both cars were on the wrong side. I put Maggie on the bus and saw there was no parking available yet. I needed to wait for people to start leaving for work. I set the timer so I would not forget. At 7:50, I moved both cars to our side where they could sit until 12 days from now when they clean our side.

Unfortunately, we may have to use them between now and then.

Today's Gratitude: I'm thankful for my kitchen timer.

Is there a doctor in the house?

Raising Maggie with all her medical issues has some distinct advantages. I am an excellent diagnostician. Really. Maggie can blink the wrong way and I know instantly what is wrong and zoom her off to the hospital. 99% of the time I’m right, based on nothing more than instinct. Doctors who initially dismiss my concerns as simply those of a nervous mother inevitably say, “good job mom” when it turns out my instincts are right again. Happily I’m losing that skill a little bit because Maggie is so much healthier than she ever was before.

I can tell you this, though – that sharp instinct was not maternal, per se. It was something that kicked in only for Maggie, not necessarily for the boys. Maggie’s life and death situations honed my responses to such a fine point , that I often overlooked the bumps and scrapes of everyday childhood. None of those compared to rushing off to the hospital for a neurosurgery. I guess I was something of a specialist but couldn’t hack the general practice.


As I my boys can tell you, if they weren’t bleeding or on fire, they got zero attention from me for medical issues.


The best example of this happened in 2007. That was a rough year for us. My dad died in January of that year and then in March, Maggie became very ill and spent over three weeks in the hospital. When she came out she had the trach and her care went from complicated to ridiculous. There were numerous complications and emergency trips back to the hospital after that and things have really never been the same since.


In the last week of August of 2007 Tim had just started his senior year of high school. He complained about a stomach ache and I ignored him. He complained the next day and I said, without even looking up, “it’s probably just the start of school and the change in your schedule.”
In the middle of the night on Thursday of that week he came into my room doubled over saying in a desperate voice “You’ve got to help me.” Allright. I got up and went downstairs with him and gave him a glass of water. Maggie’s nurse was here and said, “Sally, you’ve got to take this boy into the hospital.” I said “ok” but didn’t really share her concern.


Because I spend a lot of time in Emergency rooms, I prepared myself for a long stay. I made a pot of coffee and gathered the crossword puzzle and other parts of the paper I hadn’t read. The nurse was pacing nervously and Tim was clearly uncomfortable. Steve stayed behind to deal with Maggie in the morning and finally we left for the hospital. I still felt like I was placating the nurse and Tim.

Once there, it took about five minutes to diagnose appendicitis.

Yeah. I felt pretty bad. I apologized to Tim over and over. He was on pain meds until his surgery several hours later. Once the pain was gone, he didn’t care.

It has actually become something of a family joke. Tim told Eddie not to worry if there is an emergency and he gets real sick, mom will be right there with a glass of water.


Hey, it's the least I can do.

Thankful- November 4 another beautiful day in San Francisco. I'm thankful Tim is taking the car today so I have an excuse to walke the dog in the park.

One Man's Ceiling...

It is rare that I stop and say a quick prayer of Thanksgiving for Maggie’s circumstances. Do not get me wrong, there have been numerous close calls and I am always very thankful they work out for the best. IN addition, I do realize that caring for Maggie has made me a better person and I am thankful for that as well. However, Maggie’s circumstances have never been something for which I was thankful. That changed a little this week.

I met a woman about my age that has a severely disabled sister. The sister is 49 years old and is cared for at home by her aging but capable mother without any help. The mom does not want any help and has devoted her life to caring for her disabled daughter. The woman I met said that her sister cannot do anything like Maggie can. She does not have any communication (except her mother always understands what she wants/needs), does not have any activities, etc.

I realized then that Maggie would be in exactly the same boat if she were born a generation earlier. IN fact, there is almost now questions that Maggie would not have survived if she were born even a few years earlier. It is not the cerebral palsy, but the several other complicated medical issues with which she was born. I told the woman, Maggie could not do anything either, but they started working with her when she was just a few months old. I did not understand the purpose of many of the things they did in those early days, but I went along because Maggie seemed to enjoy it. I understand now that all those toys and activities were building blocks for Maggie to use to develop skills for communication, positioning, etc.

I am thankful that Maggie was born in 1994 and not 1960. I am thankful she was born in a big city so close to the cutting edge medical care she needed (and still needs), and that she received therapy from dedicated talented professionals who worked together and separately to give Maggie a better life. Moreover, while the passage of time generally means advancement in technology, I find myself thankful that t she was not born now when many of these programs are disappearing under the budget axe.

I am thankful that the great school program that she is part of exists in San Francisco and her great teachers, from Pre-K to High school believed in her and helped her learn. I am thankful there is a place for her in the world and that people get to spend time with and enjoy her sense of humor. I am especially thankful for the nursing help I have because I could not do for one week what that mother has done for 49 years.

I still wish Maggie were a typical teenager giving me fits for her behavior in typical ways, not for the way she behaves when her diaper is being changed. I wish I did not have the insight I do to realize how lucky she is. But I do and she is. And that makes me thankful.