Greetings and Salutations

I had a meeting at UCSF last night. It’s only about ½ mile from here as the crow flies. It is three times longer than that to drive because you have to get across Golden Gate Park and the route is circuitous. Despite that I drove. The meeting does not get out until after dark, and it is not a walk you take at night. The park has some strange characters. The vast majority of these characters are harmless, but it only takes one.

As I drove home, I was thinking about one of the park characters from the past. We called him the Waving Guy. Every day for well over a year this guy stood at a little cut out above the Arguello Gate in the park and waved. He waved at every car, truck, stroller or wheelchair that went by. There is not a lot of traffic but there is a steady stream of vehicles as that is one of the few automobile access points across the park. He stood up and just waved all day every day. Until he disappeared, he was there every daylight hour. If it was raining, he wore a bright yellow slicker with the matching hat and boots and stood under a colorful umbrella. One hand was always free to wave.

He did not start waving as vehicles or people approached. He never stopped. At least that’s what it seemed, we were never sure. The waving was always in motion and the tempo was always the same. He would sometimes smile when people waved back, but not always, and he never disrupted his motions. I presumed it was some sort of performance art. If not, there was some serious mental illness going on. Whatever his purpose or motivation, he entertained us for months.

The year or so that the waving guy was at his post was a bad health year for Maggie. She was in and out of the hospital. The hospital is an enormous structure at the top of the hill just south of the park. My house is in the flats just north of the park. Maggie was in intensive are on the 6th floor and I was staring out the window trying to figure out if I could see my house. It’s not possible because my house is on the first block after the park. Both the hills and the trees from the park block the view of my street. I was trying to figure out how close I could see using landmarks to mark corners etc. (You find ways to entertain yourself during long stays in the hospital)

As I stared, I could see rhythmic movement in the trees and could not figure out exactly where or what it was. It took me quite a while to figure out. Eventually a smile crossed my face as I realized it was the Waving Guy. When the boys and Steve come up later in the day to visit Maggie and me I had each of them look and try to figure out what the motion was. (One of them got it right away.) All of us were hugely entertained by that. In addition, we figured out that he really never did stop waving.

One day he was gone and we haven't seen him since. I still think of him almost every time I pass that spot, and that's almost every day. As I passed his old post last night, I wondered what happened to him. He was probably in his 30s then and looked in reasonable health. I hope he is waving at some other spot now and continuing to delight people as much as he delighted us.

Funny how people touch our lives without ever knowing it.

If it an't broke, don't fix it

As we waited for the school bus this morning, Maggie and I took a good long look at the house. It needs a paint job that is for sure. We talked about how skinny and tall it is. I suddenly realized Maggie has not been in the upstairs of the house in more than two years. We used to carry her up there all the time to hang out or sleep in our room if we did not have a night nurse, but not anymore. She is too big. Maggie is limited to the four rooms downstairs because there is no access to the upstairs bedrooms.

We have loved in this house for 22 years. It was my grandmother’s house and we bought it from my dad before we had kids. It was such an enormous house when it was just the two of us. That changed as kids arrived, and got bigger and continued to accumulate “stuff.” With all Maggie’s equipment added to the mix we really are shoe horned in here now.

This house is very typical San Francisco, it goes straight up, and that makes it among the worst possible domiciles for a wheelchair. We have made adaptations to make the house work for us; we moved Maggie downstairs and converted the breakfast room into her bedroom. We remodeled to add a shower to the half bath off that room and my husband built a deck off the back. We had an elevator installed outside from the back yard up to the deck off Maggie’s room; it does not go all the way up to the bedrooms.

Most of the work was done about five years ago when Maggie was half the size she is now. She’s still very small, but as she grows, her equipment grows with her. The shower chair fills up the shower now. There is no room for Maggie to hang her legs off the end of the chair. When she gets a shower, she is wedged in there with her legs against the wall. Maneuvering her wheelchair around the four rooms downstairs takes some engineering as well.

There are many doors in this house, including French doors in the living room and into Maggie’s room. We have removed the two dispensable doors into the kitchen, but the rest of the doors are necessary. The wheelchair fits through the doorways, but often an open door from one room blocks access in another area. For example, here is the open door to Maggie’s room blocking the doorway to the kitchen. We have the same problem in the hallway. The open doors from the living room and the basement create obstacles. In order to get through you have back the wheelchair up and go around to shut the doors. Maggie helps sometimes. When we are coming out of the kitchen through the doorway pictured, she will often get her foot behind that door and use the high muscle tone in her legs to swing it closed ahead of us. It does not always work because she has to hit it just right, but

when it does, she is very proud of herself.

The large wheelchair also means our dining room table is off center. The dining room is the pass through from the front room to Maggie’s room, so we need a wide enough area to make it through with the chair. It doesn’t really matter except the chandelier always looks a bit cockeyed because it’s not centered above the table.

When you get right down to it, this house does not work for us at all. The adaptations we made are no longer effective and I am not sure what else we can do. Occasionally, I look at flat ranchers and marvel at how much easier it would be for all of us; but I know we will likely never move. Getting a house like that would likely require relocating to the suburbs, and for many reasons, I do not think that’s for us.

We are city people and we take advantage of the amenities of living where we do. Golden Gate Park is just ½ block away. Most importantly, however, all of the services Maggie receives are county based and San Francisco City and County are one and the same. Leaving the City means moving outside the county and starting everything over again. School is working, the nursing is set up, her doctors are just a few blocks away, and she is familiar and happy. In addition, Steve would have to stop riding his bike and commute which would be more time away from home and more frustration. Personally I used to be adamantly against moving to the ‘burbs, but I don’t feel that way anymore. At this point, I would probably be fine either way, but I do love living here, despite the Rubik’s cube we have to do every time we want to go from room to room.

For now, we will just ignore the hassles and the dings in the wall from repeatedly missing the tight corners while pushing the wheelchair. It may not work very well, but it ain’t broke either.

Kids of all ages

Mother’s Day is at my house this year. I am having the family, my mom and siblings over for lunch. Generally, this would be a huge undertaking because my family is so enormous. I have written before that my mother has 20 grandchildren (see 14 of the 20 in the pic)produced by her seven children and their spouses. If half the crowd shows up you have to plan food for 20 people, many of them men between 15-25 years old with huge appetites. Generally, we have parties at my mom’s house because it is the only one big enough to comfortably fit everyone, and they are always potluck because it is too much for one person to undertake.


Not this time.

I believe Maggie will be the only grandchild present on Sunday. None of the cousins is coming. In addition, one brother and a couple of spouses are not going to make it. We will be 12, and I do not have to include Maggie in the food count. Cooking for 11 middle-aged folks is very easy. It’s like cooking I do when my boys are home.


The “kids” are working, away at school or living elsewhere. No more babies, no more grammar school kids (Maggie’s the last and she graduates next month). They have grown up. All of my siblings live in California, six of us within 60 miles of San Francisco and one in LA. The offspring are mostly in California, but there are representatives in Nevada, Washington, Arizona, Montana, Colorado, Vermont and Maryland. The oldest cousin has three children of her own; the next generation has started. We have come full circle.

Obviously I know where my boys and each of my nieces and nephews are and generally what they’re up to, but it wasn’t until we were planning this that I realized we’ve reached a new plateau in the family. It must be interesting for my mother to see this. This is the second generation to leave the nest.


It is one of the benefits and drawbacks of being a mother. You create the nest, feather it, bustle around it and then send your birdies off into the world. For some this “empty nest” is a problem. Not for me. I am enjoying it while I can. I know that just as the nest becomes quiet and comfortable, they come back. And they bring people with them. Just ask my mother.

Happy Mother’s Day to all the mothers out there.

Lucy and Ethel

Maggie had a chest x-ray this morning, which is always an adventure. Inevitably, the x-ray techs are NOT happy when they see Maggie. They always ask if she can sit up on her own. When I say no, they realize they have to get creative. Today was no exception. I have to stay in the room, wear a lead apron and hold Maggie still in these wild positions so they can get the shot they need. It is like playing twister, only it is not a game.

Maggie is not sick, but some symptoms are starting. I know the drill well enough by now that this will continue for a few days and then she will be sick. I cannot let that happen. I have to go pick up #2 son from school on Monday and will be gone for 36 hours. The routine is carefully set, but a sick Maggie is not part of the plan. For once in her life she did this mid week instead of 5:00PM on Friday. Today is clinic day at Pulmonology and we scooted right in there. Sweet.

The doc ordered a chest x-ray just in case that rubber syringe tip she swallowed a month or so ago was the cause of the problem. My heart dropped at that thought. I presume she swallowed it and it’s stuck in her system somewhere; it never crossed my mind that it could be in her LUNGS. She just wanted to be sure, so off we went to radiology.

We were met by two techs I named Lucy and Ethel.

They frowned at Maggie, then looked at each other and frowned again. Lucy asked if Maggie had ever had a chest x-ray before. (Keep in mind Maggie has a trach, and generally they do not put those in without at least a couple of pictures of her chest to show it’s necessary). I just smiled and said, “About 10,000 times.” They looked at the chair to see how they would do it, clucked back and forth and seemed lost. I said, “Look, the way we can do this is put some foam behind her, scoot her forward in the chair, flip the lateral supports back out of the way and I will hold her so you can get the shot. It’s worked before.”

They said that would not work. Ok. I just pushed her into the room. Ethel was VERY concerned about Maggie’s Hannah Montana shirt because it had sparklies on it that are metallic and can show up on x-ray. “That’s ok,” I said, “let’s just take it off.” Lucy then went on for five minutes about how they need a plain t-shirt. I should never have put this shirt on her. “Weeeelllll,” I said “I had no idea we were getting a chest x-ray and don’t generally dress with radiology on my mind and we can always take it off.” That fell flat; my sarcasm was lost on these two. They were buzzing around knocking into each other. She started again with the shirt and losing my patience I said, “Let’s just do this, I’ll take it off her.” (for the 3rd time) “Ok mom* but next time….. “ I stopped her. “Let’s just deal with this time.”

They unhooked all of Maggie’s buckles and supports as I was putting on my lead apron.
‘Wait a minute”, I said, “she’ll fall!” Ethel says” No Mom”* she looks pretty stable to me. I said, “Well she’s not.” I lurched forward to catch Maggie as she started slumping over to the side. Neither even noticed. It was like watching C3PO buzz around; they were smart but oblivious to what was right in front of them. After conferring, they told me a chest x-ray was not going to be possible, and I told them she has done it before and we do not have a choice. More clucking and scurrying back and forth. I said, “Why don’t we try the foam and moving the chair parts like I suggested, it’s worked before.”

They started tossing foam behind Maggie and had me hold her hand above her head, but for some reason only gave me her right hand. I asked her to give me the left hand because I could not reach down and get it without letting go of something important. Not listening, Lucy kept putting the left one on the armrest of the chair. Maggie would move it, of course. I told her again that Maggie could not keep her other hand still and finally made a quick grab for it. I was like a magician pulling the tablecloth out. Now I am standing behind the chair trying to support Maggie in the chair, with no straps as she is pushed forward in the seat with her hands over her head. In addition, I have to make sure my arms are not in the field for the shot. It was very precarious. Lucy and Ethel thought this was a good time to move the entire chair back a few inches and then discuss it. I thought I was going to scream.

We got the shots. The lungs are clear. No foreign bodies. Yay.She needs antibiotics, but that's it.

Lucy and Ethel were high fiving each other. One of them came up to me and said “Try to remember next time she needs an x-ray, tell the tech that pushing her forward in the chair with foam behind her, moving the side things and you holding her hands up really works.”

Really? I will try to remember that.

Oh, and I am not your mom.

Make-A-Wish

Maggie’s health issues have been dramatic throughout her life. The 70 surgeries she has had to endure have affected almost every part of her body. Some of those were scheduled and we could prepare ourselves (at least in theory). But most of them are emergent and need immediate intervention. For these we drop everything and run to the hospital. Happily that hasn’t happened in a while {knocks wood}

The bulk of Maggie’s surgeries have been for hydrocephalus, or water on the brain, a condition she developed at 6 months of age. We all produce fluid in our brain, and Maggie is no different. However, for her and others with hydrocephalus, the fluid does not drain properly and builds up in the brain which is, (without going Latin on you) not good. She had a shunt, which is just a tube that works as a drainpipe of sorts, placed in her brain to take the fluid to other parts or her body.

Many people have a shunt placed and never have another problem, or perhaps several years down the road, something happens and it has to be replaced once or twice. Not my girl. There have been over 50 surgeries to correct, replace, deal with infection, repair, etc.

For Maggie the problems seem to come in groups; hence, the 50 surgeries have not been spaced evenly over a period of her 15 years of age. Right now, we are enjoying the longest streak ever without a problem; it has been four years and everything is smooth. {Again with the wood} She had one other good long stretch like this about 10 years ago. Occasionally there has been a single surgical repair, but generally, the surgeries come in waves of three, or five. In two particularly bad periods, there were 8 or 10 surgeries over a 90-day period.

It was after one of these terrible periods of repeated surgeries and emergencies that Maggie was referred to the Make-A-Wish Foundation. If there is anyone out there who is not familiar with Make-A-Wish, I suggest you check it out. They are in the business of granting wishes to sick and dying children. This is not about getting medical equipment or helping with bills. It is about letting a sick kid, who often does not get to have much fun or exercise any control over their life, choose one thing, pretty much whatever they want, and this foundation will see that it happens. It is an amazing organization and being on the receiving end of it was incredible.

This was three years ago. Maggie did not have the abilities to convey her wishes as she does now. It was difficult to ask for something when the Make A Wish people came to the house. It was supposed to come from Maggie and we were in a position to choose for her. Son #1 (the bicycle enthusiast) thought she wanted the whole family to have new bikes, and son #2 thought season tickets to the Giants would be right up her alley. Negative on both.
I just wanted to make a travel wish because it was so difficult for us to travel because the planning was so daunting. If someone else was doing the planning – bonus! In addition, I knew that Maggie’s favorite thing was hanging out with all of us together. As the boys were aging that was getting more and more difficult, thus a trip would serve that purpose as well. But where? We had done Disneyland and it was too much for Maggie. The beach is not a welcome spot when you have a wheelchair user. Hiking was obviously out. Where should we go?

Steve really channeled what Maggie would like to do. Maggie’s favorite thing in the entire world at that point (and maybe still) was listening to someone read the Junie B. Jones books. (see:Maggie World: Manners/Greetings)When that someone was her dad, she was in heaven. Steve suggested we travel to meet the author of the books. It was perfect. A weekend in Arizona in a nice resort meeting the GENIUS behind these books that had been the source of so much joy was perfect. Sadly, because of her own health issues, the woman could not do it. That was unfortunate, but if anyone understands how health issues control your life, it is my family.

We ended up on a three-day cruise to Mexico. Maggie had the time of her life. Because it was a cruise, the boys were with us the entire time. They had one room and Steve, Maggie and I shared the other. This is not something I would ever choose to do but it was the perfect wish for Maggie. The Make-A Wish people took care of everything. We were picked up in a limo, taken to the airport and shuttled to the ship in Los Angeles. Everything on board the ship was taken care of and they gave us spending money as well. We got VIP treatment, even touring the bridge.

Maggie had a great time blowing the ships horn and really how often does a girl get to play shuffleboard with her cool brothers. Best of all, though, we spent time enjoying each other’s company in a relaxing and care free environment.

Looking back now, I appreciate it even more. That trip was in 2006, shortly before #1 son graduated from high school and left for college. In 2007, Maggie was sick again and had to get the tracheostomy. Travel now is impossible. There is just too much equipment. The timing was perfect for her health and it was the last time we really spent time alone together. It was all we could wish for.

What is your one wish?

Note: After work by the guestbook creator, it is a better fit on the page now. Look to the right and let us know you stopped by. Thanks.

The Strangers of Kindness

Before I write another thing, I want to say two seemingly unconnected things: 1) people are generally kind and well meaning; and 2) I give and accept prayers willingly.

We had a wild and exciting trip to Target on Saturday morning. Maggie loves going to Target, there is so much to look at and the aisles are nice and wide for easy maneuvering with the wheelchair. Dad came with us, which is a bonus. He and Maggie kept disappearing down different aisle and returning with some ridiculous item that we did not need. Maggie enjoyed that immensely. I would say "put it back" and Dad would say "Mom's no fun." We spent over an hour going through the aisles filling the basket with necessities. They were mostly supplies for Maggie’s care. We use a lot of stuff and buying at Target saves us a bundle.

We finished our loop around the store and got in line to pay. There was a middle-aged woman in front of us in line along with her mother (actually mother in law as I learned a few minutes later.) She smiled at us and we smiled back. It was a pleasant moment.

Maggie started making her “hungry noise”(as we call it). To a stranger it sounds only like a quiet smacking of the lips. However, if Maggie could speak she would be saying, “Hey you two, are you watching the clock? This chick is STARVING TO DEATH.” Suffice it to say when we hear that noise we feed her. Maggie eats every two hours, and if you run over time too long, she will start with that noise. It is a frequent unexciting event. We always have what the tube and prescribed food with us, so Steve took her over to the seats in the cafeteria area to feed her and I stayed in line to pay for the basketful of fun. No one even noticed this because it was just no big deal.

The woman in front of us left and I was standing at the ATM trying to line up the stripe on my card the right way. (Always a challenge for me). Suddenly the woman was back with her face about two inches from mine asking my first name. She scared the bejeebers out of me. I thought maybe I knew her from somewhere and told her. Still, about two inches from my nose she locked eyes with mine and very intently said, “Sally, I know your life must be difficult. My mother in law and I pray together every morning and want to include Maggie and you in our prayers.” (Steve was OUT, apparently).

How am I supposed to respond to this? The physical response was to lean backward away from her face. And the brilliant verbal comeback…..”Uhhh, thanks?”

It is very kind, it is very well intentioned, but it is very odd to have a stranger in your face telling you how hard your life is. The woman left and I just looked at the checker whose eyebrows were up at her hairline. She looked intently at the items she was scanning. I did not say a word. I was flummoxed.

After I paid the $144 for the supplies, I went over to Maggie and Steve who were just finishing the feeding. I told him what happened and sort of screwed my face up and said, “it’s very nice, but it’s just weird, what am I supposed to say.”

Steve did not bat an eye. He just said, “Tell her if she wants to help to give us the $144, right Mag”

Maggie just laughed because Dad is a riot.

I solemnly swear

Maggie swore in class yesterday. I have a daughter who cannot talk, cannot emit sound, does not have swear words on her communication device, and she said HELL out loud in class.

You need some background to appreciate this.

Vocal speech is a physiological phenomenon. A person can emit sound because they vocal chords move as we exhale and they can control their mouth and tongue to formulate words. The ability to talk and gift of gab are different from the physical ability to make sounds; they are complicated intellectual and neurological functions. Most people effortlessly combine the two abilities and engage in meaningful speech. Some people lose or lack one ability or the other. Babies have the physiological ability, but lack the intellectual function/maturity and have not developed the neurological pathways to talk. (They quickly figure it out, though.) Sometimes a stroke or other neurological event disrupts the intellectual functioning or the neurological pathways. Likewise, but less frequently, something happens to the physiological area. For example, damage to the vocal chords or even surgical intervention due to cancer affects one physically but the intellectual function remains intact.

Maggie’s inability to talk is mostly physical for a couple of reasons. The damage to her brain, commonly known as cerebral palsy, affects her motor skills, including the movement of her mouth and tongue. She could make sounds, but formulating words was very difficult because of the complex movements required. The intellectual functioning is there. In fact, she could say a few words (MAMA was the best!) and she could use tone and volume to convey messages. When she got the trach in 2007, there was a disruption in the physiology and she could no longer even make sounds. She does not make any sound when she laughs, cries or screeches in joy. It is a simple matter. The trach tube itself prevents air from coming through the vocal chords. She exhales through the tube, not through her mouth, hence no sound. Maggie needs the tube to get enough oxygen so the trade off is an easy one.

Ok, maybe not EASY.

There is a valve that can go over the trach forcing air to go through the vocal chords thus allowing a person with a trach to speak. Maggie is not a candidate for that because 1) she cannot tolerate having her trach covered for even a few seconds because she is totally trach dependent for oxygen and 2) she still has the motor impairment that prevents her from formulating words efficiently.

Yet she finds a way. Remember, that intellectual functioning and her strong personality are both working overtime.

Maggie has learned that tilting her head a certain way will block off a portion of the trach, not so much that she cannot breathe, but enough to allow some air up through the vocal chords, and make noise. It is not reliable. She cannot always pull it off and sometimes she does it unintentionally, but it always delights her. When she is laughing hard, she can sometimes emit a high squeal for a second. Occasionally you will hear an enthusiastic YEAH!

Apparently, Maggie is perfecting this technique. Yesterday she said HELL while working in the classroom. The teacher and the nurse both heard it and asked her if she meant to say that. Maggie, being delighted at the sound and the attention, signed an enthusiastic YES! They asked if her parents knew she said that and again she proudly signed YES! (Really? Thanks for that, Mag. Just throw the parents under the bus.)

Her inability to speak does not prevent her from lying or swearing. I could not be prouder.

We are staying in this weekend. Maggie is grounded.*

In addition, maybe I will start watching my mouth.**
______________________________________
*before you comment, please know I am only kidding about grounding her

**this is true.