All the World's a Stage

After our foray into the world of high finance on Wednesday, Maggie and I decided to stay close to home yesterday. We went for a nice long walk in Golden Gate Park. It was foggy and drippy, but we went to the Shakespeare Garden, the Rose Garden and walked by the museum and Academy of Sciences. We couldn’t go in because we had the dog.

 We did spend quite a bit of time in the concourse area. I think Maggie finally found an appropriate stage at the Bandshell in the Concourse

Today’s adventure has yet to be planned.  I am running out of ideas and energy and there’s still two weeks to go.  The weekend won’t be a problem. Maggie’s brother Eddie is coming home and that will keep her entertained.

Happy Weekend all!

9 to 5 - What a way to make a living

Steve left earlier than usual this morning because he had a meeting in Santa Cruz. Maggie was still in bed and I was doing something at the bedside. Steve bid us adieu with, “You girls have fun today.” I looked at him indignantly and said for both Maggie and I, “Fun?!? We are working today, IF you don’t mind.” He was properly apologetic.


Maggie did have to work with me today. I am the executor and trustee for my aunt and I am still dealing with some stubborn items from her estate and trust. The anniversary of her death is on Saturday so I have been doing this stuff for a year now. It has been a ton of work to get to this point. It is about 80% done. If I can get to 85% the last bit will go very quickly, but I have been stuck at this point for months. Finally, there is some movement and I had to get some paperwork done this morning. The only availability was between 9:00 AM and 11:00 AM. The nurse was not scheduled to come until 1:00PM, and Steve was working out of town, so Maggie had to come with me.

Maggie is almost NEVER in the financial district. There is just no reason for her to go. Both the streets and the sidewalks are crowded. Driving is difficult and parking is impossible or extremely expensive. That is, of course, unless you have Maggie the magic parking fairy with you. Her handicapped placard opens up all the metered spaces without having to worry about the time.

We had to make two stops about five blocks apart. I was only going to park once and walk between the two places. That gave me a range of acceptable parking; I could park near one or the other or between the two. As I drove down California Street, I was disappointed to see that almost all the metered spaces were also loading zones. Those would not work with the handicapped parking. I figured I would have to pull into an overpriced lot, but the last possible block had regular meters and there was one space open. It was right in front of one of our stops. Major score!! Maggie’s parking fairy dust never disappoints.

We got out, cleared security, went up to the 25th floor and got everything taken care of AGAIN! (I believe this is attempt #3.) We left there and started walking up the hill to the attorney’s office. I had to take Maggie’s picture as we crossed Montgomery Street, which is the heart of the financial district. (At least it was back in the day I worked down there….who knows anymore)

It is a very gentle ascent for four blocks, but the last block and one half are really a hill. They were steeper than I remember, but pushing the chair makes everything seem steeper. I was out of breath, but we arrived, delivered the golden papers and everything was taken care of. We headed back down the hill, took a break for a feeding and I asked Maggie if she was ready to go home. She slammed her fist down in her “no” response.

I figured she was due for a little fun after two boring meetings, so we did her favorite thing. We rode the glass elevators in the Hyatt Regency. Working girls have to sneak a little fun when they can!

She was laughing uproariously during that, but as we prepared to disembark from the elevators, I said, Ok, Maggie, back into the working world for us.

She put on her game face and we headed out.

Practical Fashion

Occasionally a woman has a fashion accessory that defines her.  Queen Elizabeth and the Royal women of England wear hats, Elizabeth Taylor has diamonds, and Paris Hilton has her little Chihuahua. Not to be outdone, Maggie McDonald has her scarves.

You may have noticed in all of the posted pictures, Maggie is wearing a cotton scarf around her neck. It has a practical basis – that is to catch all the secretions from her trach – but it has become a fashion statement.  We take care to either match or compliment her scarf with whatever outfit Maggie is wearing. We have amassed several over the three years she has had the trach and the scarves have become Maggie’s signature. When I was folding the laundry yesterday I counted 30 of them in the basket. Those are pictured below. There are at least another 20 either in the drawer or in the hamper. We need a bunch of them because Maggie goes through at least 10 a day.  .

Maggie’s scarf collection includes every color of the rainbow and several different types of designs. The only requirement is that the scarves be cotton (the understanding that “cotton breathes” is highly significant in this case) and big enough to go around her neck without strangling her. The most common is the “kerchief” style. Whenever I see them, I buy a few, especially if they are available in interesting colors. Some of her best scarves were presents from my brother Pat and his wife Julie. They gave her a Ferrari scarf from Italy, a fish scarf from Tahoe and a scarf with survival tips on it just before she started high school. Our friend Lexi gave her a couple with topographical maps of Yellowstone National park. Her teacher Ms. Taylor dyed and 

embellished a couple of them to match her prom dress and the formality of the evening.

I am always interested in growing the collection or replacing those worn out soldiers who have given all of their fibers in the interest of fashion and health. If you know of interesting cotton scarves available, please send me a link. The kerchief are available everywhere, I’m looking for the more unusual scarves so that Maggie can set herself apart from the normal scarf wearing teenager.

 Maggie is not the only one sporting a scarf in this house. Recently we added a scarf to another member of the family. We have a "guard duck" named Shirley.  She is made of stone and guards our front door. Shirley the duck has been on our huge front porch for 24 years. (That's the "porch" in the picture She was a wedding present for Steve and I from a woman named Shirley, so naturally we named the duck after her.  Age and weather are taking their toll on Shirley the duck. A piece of her neck simply fell off her and onto the front porch. Steve glued it, but it did not look good.  No problem. I grabbed one of Maggie scarves and tied it around her neck. Now she guards and looks fashionable.

Thrill seeker

Often people comment on how difficult it must be to have a child in a wheelchair. While I certainly wish I did not have the experience to say this, like anything else in life, you just adapt to the circumstances. However, one thing that continues to drive us crazy is the wheelchair itself. Not the “thought of” having a child in a wheelchair, but the actual piece of equipment.  Maggie’s wheelchair is a pain.

That may be a bit unfair. Maggie’s chair is quite amazing.  Like a Timex watch it takes a licking and keeps on ticking. Maggie is hard on this chair. Her body never stops moving and she is generally extending her muscles against the head or foot rests. She snaps both off regularly. The last time Chris, the wheelchair tech, said he made the headrest “Maggie proof.”  She takes that as a direct challenge, so we will see how long this repair lasts. So far, the bolts have held, which is to say they havn'e snapped clean off like before (though she has worked the various tightening bolts and screws loose a few time).  

Making a chair work for Maggie is a difficult proposition. She does not have any trunk support and needs a fully supported seating system to keep her upright. The chair both reclines and tilts in space, which means you can angle the seat back without actually reclining the back. We use the tilt a lot. When Maggie is having any respiratory difficulty, we can tilt her back and the change in position helps her right away.  Though I originally thought we would use the reclining feature to change her in the chair, it turns out we rarely use it. It is too difficult, you need more than one person because all the straps loosen when the chair is reclined, so it really is not safe to use that feature.  

Despite all the bells and whistles on the chair, though, all the safety of the chair comes down to the straps. There is a harness across her chest, two straps on her hips and one across her waist. There are seven buckles holding the straps in place. The harness has four, hips have one each and the lap belt has one.

One of Maggie’s favorite things to do is to unhook all those belts. Maggie, it seems, is a thrill seeker.

She has been able to undo the bottom of the harness for a couple of years now. Every time you look over that thing is flapping in the wind, or occasionally she has lifted it over her head completely and it is hanging down behind the chair, useless. I refasten them if we are on the move, but she is safe in the chair without those on if she is staying in one position. The buckle on the lap belt used to have a lock on it, so Maggie could not open it, but Maggie broke that. Now we cover the latch with duct tape so Maggie will not undo it.   All the action is in the hip belt. If her hips are stable, the rest of her will be safe.  Of course, she figured out how to undo the hip belts this year.  That is not good

The first picture is the way it's supposed to look and the second one is the way is looks when she's "fiddling." (and then falls asleep from the hard work)

If her tray is on the chair, she generally will not bother with the buckles because she has to reach under the tray to get to them. Usually if the tray is attached, she is using her talker so she has plenty to do to keep her busy. She cannot have the tray on while riding in the car, though, and there is nothing worse than hearing that “click” of the buckle opening when we are driving.  I am driving in heavy traffic knowing the only thing holding her in the chair is a loose lap belt with the latch covered in duct tape.  This tends to make a mom a tad nervous.

Steve is working on a new configuration of the belts to make the “Maggie proof.”  I am sure she will take this on as a direct challenge too, and we will have to keep adapting to Maggie’s ever-evolving sense of adventure. 

Parenting a Disabled Child

Warning, this is a departure from my usual light fare. It is preachy and angry, but I feel compelled to write it. 

Being the parent of a disabled child is difficult work. It is difficult physically, financially, socially, emotionally, and in every other “ly” you can think of. Parents get exhausted from lack of sleep, injured from lifting heavy children with physical disabilities or dealing with children with behavior issues. The financial drain can be tremendous; often parents have to stop working, as I did, to be the caregiver as well as parent to the child. Friends form the social circle often disappear because they “don’t know what to say,” cannot handle the behaviors or equipment or they simply fade away because you cannot be there as a friend the way they need you to be. The toll it takes on ones emotions is immeasurable, and is compounded repeatedly; but the emotional toll is probably the most obvious to the outside world.


I know all of this, and experience every bit of it. Yes. The lows are low. But guess what? The highs are very high indeed. What you lose financially and socially is more than compensated for by what you gain. Only parents of kids with disabilities are in on this little secret. If you try to share this secret with folks not in this situation, you often get the pity-filled doe eyes that seem to say. “Don’t put a brave face on for me.” I think I have kept my sanity by focusing on the highs and rejoicing in them. It is not a skewed version of reality. It is my reality. I started writing this blog to convey that reality, but I do not really need to convince anyone.

I am more than Maggie’s mom. I am her advocate, translator, protector, confidante, chief cook and bottle washer. Parenting her is different than parenting my sons. I am not preparing her to leave the nest and be on her own. That will never be an option for her. She may someday live somewhere else, but she will never be on her own; Steve and I will always be in charge of her. It is daunting to think of, but it is also an incredible privilege. We are the two people in the world that she trusts completely and always will. Her well-being is in our hands.

Parents can continue to function and deal with the overwhelming responsibility of this but only if they get help. Our society, like those of most developed countries in the world, recognizes this and help is available. Parents like me are in the (sometimes) difficult position of asking for all the help we can get. I know that I cannot do all of this alone and I am very thankful that there are programs in place to help. There is never enough help, of course, but it is better than it could be. Parents have to ask, beg, scream and do whatever is necessary to get whatever is available

I was sickened to read this story today. http://www.cnn.com/2010/CRIME/07/22/texas.autistic.children.killed/index.html?video=true&hpt=T2  This mom could not handle the responsibility. She “didn’t want” autistic children, she wanted “normal children.” She killed them both. She tried to get them to drink poison and when they refused, she strangled them and then called 911 and told the operator all about it. Perhaps she reached her limit and snapped, perhaps she could not find the highs in her life, perhaps she never saw or could not measure the gains to compensate for the losses, and perhaps she is just evil. I do not know. No matter what her story was, those kids trusted her completely and she committed the ultimate betrayal.

I know it is hard to ask for help. I know it is hard to walk away, but in order to be their protector, in order to be their mother, that is what she had to do. She failed them because they were not what she wanted. They were not “normal.” They needed her more because of that and she failed them.

My sympathy extends to her children who did not get a normal mother and to their father who lost his entire family.

Go long!

Golden Gate Park is a large rectangle shaped park on the west side of San Francisco. It’s about 4 miles long and maybe ½ mile wide. All in all it is 1,017 acres of wonder. It covers a lot of real estate in San Francisco, which is only 46 square miles in size. We are lucky enough to live 1/2 block north of the park close to the eastern edge (in the picture that would be the top left corner of the park) and we are within walking distance of many of its most impressive attractions, including a world class museum, the Academy of Sciences and the Conservatory of Flowers and the beautiful gardens just to name a few. We do hang out at all those places, but Maggie's favorite place is someplace much more modest.


There is a walking path entrance to the park at the end of our street. However, in order to get to it you have to run for your life across Fulton Street with its four lanes of speeding cars. I will do that when I’m walking the dog, or when Maggie isn’t with us; but doing that daredevil move pushing a wheelchair seems less than prudent. Even if we are lucky enough to make it across Fulton alive there is no curb cut on the other side and we have to lift Maggie and her chair (approx 170lbs) onto a high sidewalk. Best to walk to the signal and do things safely.

There is a signal at 6th Avenue, just three blocks west. Many of you know that 6th avenue once went through and into the park, but vehicle access has been blocked for several years now. A nicely paved walking path opens up to a fully paved road after about 10 yards. The other end is also blocked so vehicles cannot access this area at all. This ½-block stretch of pavement is the best spot for roller skaters. They never have to worry about cars. On the weekend afternoons, this spot if filled with roller skaters racing about or doing tricks and jumps in the middle. They are fun to watch and people gather around the edges for the free show. The skaters take great care of their little spot; in fact, they bring brooms and clear away any leaves or branches. The pavement is always perfect and smooth.

Generally, when we walk through there early in the morning the skaters have not arrived yet. There might be a couple of skateboarders but the place is a nice wide expanse for the wheelchair. This is Maggie's favorite spot in the park. It is our favorite place to play catch with Maggie.

Just so you know, when I say "play catch with Maggie", I am not talking about throwing a ball to her. She could never catch it and the game would get old very quickly. No. I mean we play catch WITH Maggie.  Before you get on the horn to CPS, we are not tossing her about willy nilly. She is in her wheelchair and we shoot her back and forth between us. Each of us has to catch Maggie as she rolls by.
 Steve is better at it than I am, He can really get her chair to go a long way. I am a weakling and Maggie goes slower and less distance when I am pushing. Apparently, I push like a girl.

Even when her pathetic mother is pushing, though, MAGGIE LOVES THIS.

Even if you don't live next to someplace as cool as GOlden Gate Park, I hope all of you find that little stretch of pavement where you can roll free.

Request line is Open

Request line is open


Maggie loves listening to her music. It is pop music that used to drive me ‘round the bend, but now it’s just part of our daily life. We have the original “Maggie Mix” from her 15th birthday party, then there’s Maggie Mix 2010, which is playing right now, and just last week she received a mixed cd from her teacher. We call that one “Ms. Taylor’s gift.” We listen to all three all the time. You know this music is always on when Steve is sitting at the dinner table singing “she wears short skirts I wear t-shirts” along with Taylor Swift – she is not exactly his favorite

There are duplications on the three mixes because there are a few songs that Maggie just HAS TO HAVE. Several songs are on two of the lists, but the only song on all three cd’s is Single Ladies by Beyonce. She even has it programmed into her talker. If things are too quiet around here you will hear Maggie’s dynavox say, “Mom, I want all the single ladies put their hands up.*” That is easy. I can start any of the three playlists and we are set. Single ladies is the first song on each list. When I loaded the latest Cd onto my iTunes, I mixed up the order somehow. When I started it and Single Ladies didn’t play, Maggie just slammed NO over and over. I skipped forward until it came on and then she was happy. I fixed my iTunes order in short order.

If she just wants music, any of the three playlists will do. Single Ladies starts to play and Maggie is happy as a clam. If, however, she has a specific playlist in mind she starts squirming when the second song starts to play. Though Single Ladies is her favorite song, I believe her favorite artist in Lady Gaga and she figures prominently on each of the three lists. Yesterday as Lady Gaga was singing Alejandro, Maggie started hitting her talker and said, “Mom, I want to hold ‘em like they do in Texas please.*” That is a line from the song Poker Face and she knew it wasn’t on the same playlist as Alejandro, so I had to change it. I am amazed by her abilities, but I confess I wish we shared the same taste in music.

This week Maggie and I are attending “Girls Rock” came – which I will expound on in a separate post. The girls are invited to bring in any music they want to. Today the iPod and player are coming to camp with us.

*these phrases are programmed in. Maggie just hits “mom” and then finds the phrase with the lyric she wants. For folks who are not as attuned to pop music it sounds nonsensical, but those of us in the know are impressed.

Give me a Hand

My adrenaline is pumping and Maggie has fallen asleep.But I just learned something. Octo-mom has nothing on me. I seemed to have eight hands this morning. Maggie just had some problems and I found myself working machines and wielding different tubes in concert to get her the help she needed.  I'm not even sure where all the hands were coming from , but it all worked out and Maggie is fine.

It's the first weekday with no summer school. Steve already left for work so it's just Maggie and me here. Maggie is going to a camp with her lovely mother as her aide. We are stalling so I can time things correctly so that I don't need to do some of the procedures while she's at camp.

Just as I finished feeding her she needed suctioning. No problem. Clamp and disconnect  the feeding tube and get out the suction catheter. It was fine at first, then it wasn't. In about 30 seconds she was overwhelmed and choking.  I had to get the feeding tube reconnected and opened up to relieve some of that pressure but I was holding her up a bit to prevent more choking and working the suction machine feverishly. In retrospect, I should have turned on the oxygen but she was OK without it. If it lasted any longer she wouldn't have been. 

If Steve or anyone had been here I would have been yelling for help. But there was no one. I felt this calm come over me and watched myself take care of everything. I cannot even tell you how I did that - it seemed like I had an extra pair of hands. I was holding her up, reconnecting and holding the feeding tube and deep suctioning her all at the same time.  It took about a minute of work and I'm not sure I breathed in that time. Crises ended and Maggie was exhausted and almost immediately went back to sleep. I melted in a corner, the calm leaving as quickly as it came.

Now we're off to camp.

Changes in Latitudes

Today is Maggie’s last day of Summer School. Her first full year of high school is behind her. That is hard to believe. Even though it was a transition year, it’s been another great year for Maggie school wise. Many special ed parents are frustrated by the programs and services their kids get from school districts. Not me. The program she is in fits Maggie like a glove. She is thriving and excelling because of that.


Of course it’s more than the “program” it’s the people who make it work. Maggie has always had excellent teachers who are committed to Maggie and her peers. This is not an easy population to teach. Often the physical disabilities make it more difficult to figure out the intellectual level of the child. If Student X is not hitting a switch to make the talker work it could be that s/he doesn’t understand why s/he should hit the switch or it could mean that s/he cannot move the right arm to reach it. There is a lot of trial and error, starting and stopping. Yet the engine chugs and everyone moves forward.

A friend who has a child in the same program a couple of years behind Maggie was lamenting an unexpected change in teachers and I told her I believe the success is a combination of the teacher, the program and the student. I said that to make her feel better and maybe to reassure myself as well. Maggie, too, is facing a change in personnel.

Maggie’s teacher, Ms. Taylor is moving away. San Francisco is a place where many young people come to stay for a while, but when it is really time to settle, they leave because it’s so expensive here. A teacher’s salary will go a lot farther in other parts of the country. We already know who the new teacher will be. She is already at Mission, everybody likes her and she already knows all the kids, so I am hopeful things will continue to chug forward. I have no doubt that it will, and even though Maggie will have another transition, it will be relatively smooth.

Maggie will miss Ms. Taylor. They really hit it off. Ms. Taylor’s energy and talent are great. the kids were happy and engaged in the class and with one another.  She also managed the classroom like an old pro and there is a lot of management involved. There are classroom aides, nurses, in the class and therapists, teachers and others in and out of that classroom all day long. Ms. Taylor had to juggle all the needs of all the kids and all the personalities of all the adults. She did it all with a smile.

Thank you for everything Ms. Taylor. We wish you well as you leave California. I hope the kids and the parents in Nashville realize how lucky they are to have you.

Straight Talk

Maggie’s communication skills are improving every day. She tends to plateau and then jump forward with her abilities to maneuver around her communication device. Right now, she is definitely jumping forward. About a year ago she would say, “Mom, cook please” which I eventually came to understand meant she wanted to go into the kitchen. Now, in the same amount of time she gets the device to say, “Mom, I want to go in the kitchen please.” (Ok, the “please” is not always there). It is really quite amazing.


Communication is a powerful tool. If she can continue on this trajectory, she will be much more included in the world. People want to know about her and her dynavox (communication device). If she can tell them herself, it will open the door to continuing the social interaction. Of course, one must also learn to control HOW they communicate – even those using an adapted device like Maggie. Sometimes you cannot just say the first thing that pops into your head as Maggie did last night. It was in a conversation with her nurse, Fely.

When Maggie’s nurse is here, Maggie is generally in her room. There is so much to do and it takes so long that she just hangs out in there. Maggie is either in her bed or in her chair. Steve and I go in and out of her room to help the nurse or converse with Maggie or both.

Last night the nurse, Fely, was finishing her work. Fely is a very professional nurse and she usually time things so that she finishes her work just as the shift ends. During the summer, her shift is over at 9PM so Maggie is still awake and ready for action when she goes. Maggie comes out into the living room with Steve and me and we hang out together until the night nurse arrives at 11:00PM. Due to some changes in the schedule, Fely finished about 40 minutes early last night and sat down to do her charting.

Maggie would have none of this. She can see us in the living room and there is no reason for her not to be in there with us. However, the glass door was closed so we were unaware this was happening

Maggie said on her talker, “Fely, I want to go in the living room.” Fely said, “No Maggie it is too early.” (Note, Fely does not have to keep her back there but she too is a creature of habit). Maggie (again) “Fely, I want to go in the living room.” Fely, “no Maggie I will finish my charting and bring you to the living room at 9:00 when I go home.”

Pause. Maggie thinks about this development and then starts clicking away making a new sentence.

“Fely, go home”

Yup. Communication is getting better all the time. Maggie knows what to say to get what she wants. Now we need to work on manners.

Living on the Edge

I had lunch with a friend yesterday. Her daughter also has significant phycical disabilities and this year has had terrible health issues as well (but she's doing great now). During lunch she apologized because she had to check her phone several times to deal with a crises. Since my middle name is crisis management, I completely understood. However, this crises had nothing to do with her daughter. It was one of those annoying issues that can happen to everybody. In this case it involved false charges on an account.

I just looked at her and said, don't you think we should get immunity form the everyday issues and annoyances? She laughed and said THANK YOU! That's exactly how I feel.

When you are dealing with raising a child like hers or mine, it doesn't seem fair that the car should need repairing or that you get locked out. I don't mind the responsibility that comes with dealing with Maggie's extreme issues, I just want a free pass from the regular annoyances. That seems reasonable to me.

It's the little things that send me OVER THE EDGE. I can suction, speak to doctors about 1000 different procedures, and load the wheelchair into the van all at the same time without batting an eye. But if I turn the key and the battery is dead or I misplace my keys  I lose it. I can either melt into a puddle of tears or erupt in anger.

Now you know, so you might not want to be in front of me in a traffic jam.

Addendum : I wrote this and then went out. I snagged an EXCELLENT parking spot right in front of the produce store. I was in there three minutes when I realized I forgot to put money in the meter. I put the basket down and headed for the front of the store. Too late I already had a parking ticket. I neither cried nor got angry. It was too ridiculous. That broccoli cost an extra $55. And then I forgot to put it in the stir fry.

Double Dutch Weekend

Maggie and I were moving slow this morning as we prepared to get her on the bus for the last week of summer school. It is Monday after a busy weekend and we both felt it.

Saturday involved a trip to the Academy of Sciences. She spent the early morning using her talker to say, "Dad, I want to go aquarium."  So we did. As we entered the woman checking tickets said "Hello, Maggie." It is pretty unusual for someone that I don't low to greet her by name; it's welcome, but unusual. It turned out the woman is a college student who worked in Maggie's classroom this year. Maggie was very pleased with that. Then she and Steve met a lovely little creature.

I had to disappoint them both when I told them they couldn't keep him

The rest of Saturday was spent preparing for our World Cup party. We had "The Dutch Brunch" and offered both Spanish and Dutch fare. There were 12 people here watching the game. Maggie hates watching television so we put her where she could see all the people but not the screen. Most of us were rooting for The Netherlands(Maggie was decked out in Orange) but none of us were that into soccer that it mattered. Mainly we ate Dutch cheese and Spanish Omelets, drank Sangria, Cava and Dutch Beer.

 Conversation was light and easy until something happened - or almost happened - in the game. Poor Maggie would jump a mile when there was a shot on goal and all of us shouted at once and then followed quickly with "oooooohhhhhhhh" when the shot missed.

Maggie was a little relieved when her nurse Josephine arrived and she could leave the room.

Soup Kitchen

I arrived home from dinner Thursday night around 8:30. Steve was in the kitchen making a giant pot of kale soup.When we turned in around 11:30 the soup was still cooking. He just turned it off and left it to cool over night and dealt with it Friday morning.

Brisco the wonder dog was watching him intently as he put the soup into containers just in case a piece of meat should fall on the floor. I was sitting at my computer and could see the dog staring. I could not see Steve, but I could hear him.

I  busted up when I heard Steve say to the dog: 'NO SOUP FOR YOU!" in his best soup nazi voice.

Brisco didn't think it was as funny as I did.

If you've never seen Seinfeld's soup nazi episode, this will mean nothing to you.

Peace in the Kingdom

It is 8:12 AM and I am ready to go back to bed. Maggie left at 7:25 and I have a laundry list of things to get dome this morning, but I am exhausted. I have already put in a full day of thinking.

Maggie’s newly repaired Dynavox arrived yesterday. I waited around for UPS all day because I had to be here to sign for it. (Of course, they arrived at 5:45 PM). It comes back wiped clean so I had to reload all her information. I carefully loaded all Maggie's settings to a flash drive and put them on the repaired machine.. I was patting myself on the back so hard I may have reinjured my shoulder.

The repaired device arrived just in time because the loaner machine has been acting up in the past few days.. One of the switches would not work at all. Maggie could scroll through all the choices with one switch, but when she went to select nothing happened. This was extremely irritating for her, which means it was miserable for the nurse and for me. We were trying to convince her we could fix it but we were really just resetting it every few minutes.

The repaired one worked fine – for about 20 minutes. The same thing started happening. I could not believe it. It had to be a faulty switch. I have a couple of spares downstairs and Steve changed it for me. It has to be screwed on to the tray. (He is in charge of all crafty things as well as things involving tools or manual dexterity).  

New switch plugged in and same problem.  Arrrgh.

 By now, it is 9:30PM and Maggie is both tired AND mad. I told her we had to call the company and see what to do.  She was smashing her fist into her tray saying NO NO NO.  The thought of Maggie without any communication device all weekend was not pretty.  

I woke up at 4:45 for some unknown reason and as I tried to get back to sleep I found myself thinking about the dynavox problem.  It suddenly dawned on me that perhaps when I copied and pasted the settings from one device to the other, I loaded some erroneous code onto the repaired device.  The tech support opens at 8:00AM EST, which just happens to be 5:00AM here. I could call right away and get this fixed before Maggie went to school. I hopped out of bed. 

Let’s say that again. Tech support at 5:00AM. The coffee was still brewing and my cup of tea was not shaking the cobwebs from the brain. My tech support person, Eric, was great, but I had to tell him to slow down a few times and remind him of the time difference. We did trouble shooting on various things. He asked about the switch and I said, proudly, "no, I thought of that and I just changed it."  I gave him my theory about loading bad settings onto the repaired machine. He politely said, perhaps, but that really does not make sense. We tried some more things.  After about 40 minutes, he said, “I think we’ve isolated this to the switch.”

 Harrumph, I thought, how can that be. I just changed it.   I padded down to the deepest bowels of the basement to find the last switch in the box. I plugged it in and VOILA!  Success! The brand new switch was faulty.  My supply is now gone and I have to order more (at $30each!) but Maggie went off to school with a working communication device. 

Thus, the weekend in the Kingdom of Maggie will be peaceful; she can sit on her throne and issue edicts to us, her lowly subjects..  

Have a nice weekend. Enjoy the World Cup finals. We are rooting for the Netherlands to honor my Dutch grandmother. 

Pillow fights

Maggie is in her bed, but she would rather not be. You might wonder how I know that, considering Maggie cannot talk and her communication device is charging in the living room. It's simple, really. I just heard her nurse say "Maggie pillows do not have wings and they are not meant to fly."

Maggie is tossing things out of her bed to make sure we now she would rather be elsewhere. We are expecting someone in a few minutes and I want to keep her out of her chair until they get here so she can get a break from being in the same position for too long.

If Maggie has to do something  she doesn't want to do she protests constantly, which makes her a normal teenager, I suppose; but her protests do not involve stomping off and slamming doors. Rather, Maggie's  protests might be kicking the side of the bed or throwing anything she can reach. She laughs uproariously when these things hit the floor.  If she's truly upset she will cry and kick. That doesn't happen very often. As long as things are flying around her room, I now she's happy. 

It is exhausting to entertain her when she's like this, even though she is happy. You have to keep the banter going constantly. This happens a lot while she's being catheterized. I ask her questions like "who wants to get in her chair?" and she points to herself. "and WHO is going to put her there" - and she points to me. Or "Who loves Maggie" - and she hits me or "Who is the prettiest girl in the room" She always votes for herself first, the nurse second and I am last. I express my outrage, but she just laughs and laughs.

 We have various routines we do when she's antsy. The routines seem to calm her down and ground her. The answers are always the same, but the routine is important.  Once in a while she changes things around and completely amuses herself as she did this afternoon.  This is something her nurse Fely taught her many moons ago. I ask "How much do you love your mother" and Maggie points to the top of her head and then lifts her foot up to grab her toes as if to answer, "I love her from head to toe".  We did that today and she gave the routine answer. Then I asked "How much do you love dad?" She pointed to her head, then smiled slyly and put her hand on her KNEE.  "What", I said in mock horror, "only to your knee?"  She thought that was hilarious. She gave the same answer for Eddie and Tim and when I asked about me, I got the all the way to the toes response. 

What can I say, it's a mom thing. If the men in the house want the rest of that love, they have to play the game. She's in charge. Always.

Excuse me, I have some pillows to retrieve.

Big Brother is Watching

Maggie's oldest brother Eddie came home this weekend. We hadn't seen him since April, so it was good to have him here for a quick visit. No one was happier than Maggie, though.

Maggie is very good at living in the moment. We could all learn something form her ability to do that. She is happy every day, but when her brothers are here, she is over the moon. Everytime Eddie came into the same  room as Maggie, she would laugh uproariously as though this was the first time she had seen him in months. When we went out for our 4th of July walk in the park  she reached out for Eddie on his bike to make sure he was gonig to join us, which he did. 

 He went into the basement for about 5 minutes and when he came back upstairs she stopped working on her sentence, reached her hands out for him and laughed. It was a great big WELCOME HOME over and over again.

If both boys come home at once, we may have to sedate her.

Flagging Maggie (with apologies to Flogging Molly)

We went for a walk in the park this morning. Eddie is home and he joined us - but he rode his bike while we strolled. It was a good thing he was there because we were about 4 blocks from home and I went to suction Maggie and realized we forgot the suction machine. That is a first for us. Eddie zipped home on his bike and was back in about five minutes. Crises averted.

I think we were so focused on Steve lashing the American Flag to Maggie's chair that we forgot the suction machine. Her understated patriotism brought a lot of smiles to passers by. Hope everyone is enjoying their 4th of July.

sorry I just edited - I hit post instead of spell check.

Surrender Dorothy

It's 4th of July weekend! I love holidays that don't have a lot of rules to them. The 4th of July is one of those. You can choose from any number of relaxing and enjoyable things. Have a picnic! Go to a baseball game! Watch fireworks! Do nothing! Enjoy your independence!

There's no pressure, but there are traditions.

One of those traditions in this house - and in hundreds of other houses  - is the flag cake. (note, this picture is not of a cake I made. I couldn't find one and snagged this from the web. Mine is generally more rugged than this.) I make it every year and when it works out I actually have 13 stripes made of strawberries and fifty stars made of blueberries.  (I know on the flag the stars are white on a blue background, but actual flags are rarely edible.) Often times we end up with 11 stripes or 42 stars or some such thing. It is not a statement or disrespectful, it's just spacing errors. The idea is the same and everyone eats it anyway.

Maggie and I generally make it together, but to be perfectly honest she is not that helpful.Like all cooking projects, Maggie empties out the dishtowels and throws them around the kitchen and then reaches in to the pot drawer and flings whatever she can reach. It's a ton of fun for her. She does like to listen to me swear when I realize we are leaving out some of the colonies and she loves to take credit at the end. It doesn't matter. It's tradition for us to do it together.

My son Eddie is coming home for the weekend, which is exciting. We haven't seen him since April. I told him Maggie and I would make the flag cake. He said "great! - but can you leave the fruit off". Me, perplexed, "Leave the fruit off? Those are the stars and stripes." E. "I know, but it's better without it".

 Me - dripping with dryness- so you want me to make a cake that looks like a flag of surrender? 

Ed:  Perfect.

Maggie and I have elected to ignore this request. It is not tradition. He can pick the fruit off like he does every year.

Have a great long weekend everyone!

Ground Control to Major Tom

One of the many treatments Maggie has to endure every day is “The Vest.” The vest was designed for people with pulmonary problems. The patient puts on the vest, which is hooked up to a machine that inflates the vest then shakes and vibrates the lungs. It shakes loose all the built up secretions that a person with healthy lungs clears on their own. My understanding is that the inventor of this machine had a couple of kids with cystic fibrosis (CF) and this machine is particularly helpful in that area. Maggie does not have CF, but many of her problems are similar to a patient who does. This machine has made a huge difference n the lives of many people. The treatment is not painful; in fact, it can even be fun. You just hook it up and it starts shaking your body.


We have actually had the machine for a long time. We used to use it all the time before Maggie got her trach. In fact, it probably delayed the need for the trach. Once Maggie adapted to the trach her respiratory status improved dramatically. The vest stopped working and I never got around to calling the company. (Really just the power cord needed replacing.) I meant to call and get a new one, but weeks and then months went by. However, Maggie was doing better and the machine made its way to the basement.

Maggie’s recent illness was quite scary. She was in the ICU with a respiratory flu. They had the vest going 4 times a day. Of course the machine in the hospital is newer and about 1/3 the size of the one we have. When we went home, I promised to contact the company and get our machine replaced or repaired so we could start using it again. I did not even have to worry about keeping that promise. The pulmonologists office called the Hill-Rom company who distributes the vest and they contacted me immediately. They sent out a new power cord, tubing and a vest via Fed Ex, so I had it the next day. That is incredible service. We are back in business.

The problem is there is so much equipment in Maggie’ room - oxygen tank, suction machine, pulse oximeter, feeding pump, tubes and other supplies for each and all the other medical supplies - we cannot fit anything else. I was secretly hoping the machine needed replacing so we could get the newer, smaller one, and maybe be able to squeeze it in behind the chair or something, but it was not to be. The vest machine now stays in the dining room when it is not in use. Since the treatment is only 20 minutes, that means it is in the dining room 23.5 hours a day. We need to do something. Steve is going to put it on wheels so we can move it easily, but I have a feeling it is a permanent part of my dining room décor for a while.

We were discussing the various treatments Maggie has to go through as well as our overflowing house.  I suggested Steve consider trying some of Maggie's treatments for his cold, which made a return appearance this week. He was standing in the dining room and indicating the vest machine said, “I was thinking of just strapping this on my back and heading to work. I will look like a Gemini astronaut.”

 He would look like that, and I'm sure it would be a big hit in the finanacial district.

 I do love a man in uniform and it would be out of my dining room! Win win!