Cameras

My camera died. It’s been failing for a while, little glitches here and there that would be there one day and gone the next. It lived a good life and preserved many memrires for me, but now it’s gone. Of course, Maggie’s graduation in on Friday. Arrgh. I have to replace it this week. We will be mechanized in time for graduation.

Be warned, however, that I took over my son’s Flip camera and now have limited video capabilities. It’s a little camera that takes up to 30 minutes of videos, it has a usb plug built in so you just plug it in to the computer and voila, instant videos. It’s very cool. It takes about 30 seconds to figure out and you can delete what you don’t want and edit the videos (somewhat) that you want to keep. Fortunately for you, figuring out how to get any videos onto the blog is another step. I can do it through youtube, but I’m hoping to avoid that step.

We bought Tim the Flip for a Christmas present. When he returned from school a couple of weeks ago and it was still in the box, with the seal intact, I began to get the idea it wasn’t something he wanted. He’s in desperate need of money, so I just bought it back. Gives you that warm fuzzy feeling all over, doesn’t it?

I have a feeling he will regret selling it back to me. The thought of his mom posting stuff on youtube is creeping him out.

Ready....GO!

Our weekends are generally low key, just hanging out with Maggie and heading to the park etc. Not this weekend. We were going every minute and generally in all different directions.

Maggie and Steve had a cultured weekend. On Saturday they went to the deYoung museum, usually one of Maggie’s favorite places. That was less than thrilling because the museum is preparing for the arrival of the King Tut exhibit next week and lots of things were in flux and not available for viewing. Bah! Undeterred, they spent Sunday morning at the watercolors exhibit at the Presidio Officers’ club. They both enjoyed that.

I did not join them on either jaunt for other, less culturally sophisticated reasons. On Saturday, Tim spent the morning looking for a job with mom as the driver. (Cannot spend time, energy, or money you do not have on parking when you are job hunting.) On Sunday, I met up with my high school girlfriends for 24 hours of eating, drinking, and talking each other’s ears off. We accomplished all three goals. We stayed in a hotel in Fisherman’s’ Wharf and ate in touristy places and had a ball.

When I returned after 24 hours away, Maggie was less than thrilled with me. Before I arrived on Monday morning, she was, according to Steve, acting like a pill. This girl is S P O I L E D and does not approve of any change in the program that is not previously approved by her. Mom is supposed to BE THERE in the morning. Dad and Tim are capable, but not acceptable, substitutes. She was happy to see me, but not happy with me.

In addition to all that, we had parties for two cousins graduating from high school (yay!) and another cousin leaving San Francisco after a year at USF. Saturday afternoon, Steve and Tim loaded up his stuff and drove to the East Bay where his parents (Steve’s brother and sister in law) were scheduled to arrive at the grandparents’ house. At the same time, I headed to the North Bay to my sister’s house to attend the first of the two graduation parties. Maggie stayed home with the nurse.

Monday afternoon after arriving back from time with my girlfriends, we headed to Oakland for the next graduation party. This time Steve, Tim and I went together. Again, Maggie stayed home with the nurse. She was not pleased. The combination of Memorial Day traffic and the large set of stairs at my sister’s house made that decision for us. We were not gone very long because the nurse who was here needs help with all the procedures for Maggie. That gave us a total of three hours to be gone, including 30 minutes of driving each way (without possible traffic delays).

I nagged Steve and Tim to get ready so we could maximize our three hours between procedures. I was pleasantly surprised that there was no traffic at all on the way over there. We arrived at 1:30. Interestingly, there were no cars in front of my sister’s house. Hmmm. I looked at Steve and Tim, those kind and patient members of my family I had rushed out the door and said, “Uhhh, it might start at 2.” We went in anyway (don’t you LOVE people who show up early to a party!) and helped with the last minute preparations. My sister and her family just laughed at us.

Of course, we still had to be home by 4 to help the nurse, so our time at the actual party was even shorter than originally planned. Mercifully, there was very little traffic on the way home too. After all that running around, I had to take a nap. The nurse left at eight and I just hung out with Maggie on the floor and tried to make up for lost time after barely seeing her over the weekend.

She forgave me. She always does.

Tim's Home

Maggie is delighted that her big brother Tim is back. He came home last week but basically just dumped his stuff, including at least 10 loads of laundry and left again after a couple of days. He’s back to stay now and that makes her H A P P Y.

I spent the last few days doing that giant mound of laundry. I told Tim I would wash and dry it and leave it for him to fold and put away. The pile of clean clothes piled on the futon in the laundry room is impressive. Fortunately, there’s a tv down there too. He can put in a movie and just sit there and fold.

Somehow, Tim has to find a job. That’s not going to be easy in this economy. He looked into a few things last week before he left and lots and lots of resumes have gone out on craigslist this week. Now that he’s back he’s going to go into some of those places and let them see his handsome face. These employers need to see that he is a big strong guy because the anonymity of the internet is not helping him. The jobs he is qualified for (at not quite 19 years of age) are limited and there’s a lot of competition out there. He did get one bite, but nothing definitive.

Fortunately, San Francisco is a tourist mecca and there’s always work in that industry. There’s competition to be selected, but there’s always work. Tim would do well in that industry. He is very affable and knows the City like a book.

If he doesn’t find something I will hire him to do fix-it jobs around here. Things like painting and stripping the deck. This stuff needs to be done, but are not priorities. I will not spend the money on them unless Tim needs work.

Maggie would love it if Tim worked for me because he would be around that much more. Those two have a special connection and always have. Maggie will say something on her talker and Tim will just look at her as if to say, Really? You going there with me now? She knows it’s coming and waits for it. He delays…and then delivers. She laughs her head off. They can spend hours doing that.

Hmmm. If he works for me, I’m paying by the job not by the hour.

Hi, school!

Maggie is graduating from middle school in a couple of week. I am delighted that her school does the whole cap and gown thing and makes it a real graduation. Transitioning to high school is a big deal for every kid, and maybe more so for Maggie.

I doubt Maggie anticipates the change. She knows she’s graduating and knows she’s heading to a new school. She’s been to visit the school, the classroom and the new teacher. But the reality of it won’t hit her until she arrives in August. That’s just the way it is.

In part that’s good. There is no angst and no dread of fitting in etc. In part it’s bad. There’s no appreciation for what she will leave behind. Maggie has no control over where she goes. She is at the mercy of those around her. She is delivered to a place and expected to adapt. Generally, she does just fine; but this transition is huge. She will be in a special ed class tucked away in a protected corner of an enormous high school. Will she be able to make friends like she has in middle school?

I’ve written before about the leaps in socialization she has enjoyed while at her current classroom. Her girlfriends are younger than she is and will not be making the move to high school. Will there be other girls , other friends like these? I hope so, but there are no guarantees. These girls have not simply been nice to Maggie, they have been her friends. They’ve come to the house, called her on the phone, come to her birthday party and cheered her on at Special Olympics. (see pic)

This is the right age and the right circumstance for that to happen. The girls were part of Maggies’ classroom and her teacher seamlessly made this happen. I’m not sure the high school classroom will have as much interaction with typically developing kids, or, if they do, that those kids will be as willing to befriend Maggie.

Perhaps it’s good that Maggie doesn’t have the angst and dread of fitting in. She has her mom to do that for her. One of us has to act like a grown up.

Can I count on your vote?

Today is election day in California. There are several propositions on the ballot dealing with California’s budget problems. They amount to rearranging the deck chairs on the Titanic. This state spends far more than it takes in. That means something has to change, but the two sides are polarized. Political stonewalling prevents both the necessary cuts to services to reduce spending and raising the necessary taxes to increase revenue. As a result, nothing is done. Nothing. And we keep circling the drain.

According to the polls, these propositions are going to lose. The only one with a chance would prevent the lawmakers from receiving a paycheck when they fail to pass a budget. It’s like the voters are saying: “Hey, you work for us. If you don’t do your job, you don’t get paid.”

The Governator loves to send things to the voters, which in principle is a good idea; but these propositions, like his first attempt, are badly drafted and have far reaching, un-doable effects. And, what’s more, they won’t solve any of the problems. Mr. Schwarzenegger is a smart guy and an astute businessman. He should stop using his Hollywood charm to gloss over important issues and treat the people of California as intelligent voters who are worried about the future of schools, police, fire fighters, state workers and innumerable programs for those in need, particularly the disabled.

When these propositions go down, there will be serious and significant cuts to services all over the state. Frankly, even if the propositions pass the cuts will come. I am very concerned about the nursing Maggie receives. I don’t think they will cut the number of hours to which Maggie is entitled, but they will definitely cut the reimbursement rate – again. This will impact my ability to find nurses willing to accept the lower amount. I have warned the nurses here that there may be cuts and I’m hopeful they will stick around.

Yesterday a local school board membe rsaid she’s going to vote against them even though there will be drastic cuts to schools in San Francisco and throughout California. It’s time for real reform and this band-aid won’t really help. She said if we have to go over the cliff to get real reform than that’s what we have to do. I understand that sentiment and think it has some validity; but that’s easy to say. She won’t be the one going over the cliff and neither will I.

It will be the weakest among us. It will be Maggie and her peers, especially those without families who can support them. It will be children in foster care without families to protect them. It will be the mentally ill who have nowhere to turn for help. It will be teachers, librarians, and other state workers who lose jobs. It will be homeowners whose houses burn because there aren’t enough fire fighters. And, it will be kids who don’t have sports or music or shop classes in school. They are the ones who will be lying in a heap at the bottom of the cliff.

I better go vote. If only I knew what to do.

Olympic Report

The Special Olympics were great. It was a perfect day -- clear but not too hot. Maggie had her game face on and was ready for action.

The stadium was full of hundreds of people, mostly school kids competing in one event or another. There is a high ratio of adults to kids in special ed, so there were plenty of teachers, therapists, aides, parents, nurses and other folks around as well. It always amazes me to see the level of dedication in the people who work with kids with special needs.

Maggie’s name was not on the slalom list and she did not get to compete in that event. That was a bummer because her friend Jordan was going to push her. Both girls were disappointed, but honestly, I was a little bit relieved. It is very easy to tip Maggie’s chair over and, in the excitement of the race, that was a distinct possibility.
The power chair race was another story. Maggie competed in this event last year when it took her at least 5 minutes to go the 20 yards. This year she did it in about two minutes. All the competitors did it in about 15 seconds, so Maggie was the last one out there, but that made everyone yell for her even more. Here she is approaching the finish line.

Every time I go to Special Olympics, something really gets to me. Yesterday was no exception. There was a manual chair race with kids who could propel themselves. This is incredibly difficult for these kids. They are not in chairs because an accident affected their ability to walk. The most common reason is cerebral palsy or something similar that affects the entire body, not just the legs. One young guy was out there moving himself forward very slowly and deliberately. I could see the concentration and pride. It made me a little teary, but I was shouting as loud as everyone else was as he neared the finish line.

I have to admit, the day was hard for me. Maggie’s challenges are just part of the fabric of our day, but seeing her out there with her true peers somehow brought the whole weight of this down on me. It was as though I was looking at my life through a different set of eyes.I am so proud of Maggie. She has accomplished far more than I ever anticipated she would given her physical and medical limitations. But you know what? It is a lot to deal with and occasionally I realize that.

Busy Friday

Just a quick post today. Lots of big happenings in Maggie's world.

Two different cousins graduate this weekend. Cousin Pete is finishing the University of Arizona and cousin Colleen is receiving her masters at the University of Vermont. Way to go guys!

Today is the Special Olympics track and field meet. This is the big meet that takes place at Kezar stadium. Last year it was so much fun and I expect nothing less this year. Maggie is in the power wheelchair race and the slalom event in the manual chair. Her girlfriends will push her in that one. If you're in the area pop into Kezar this morning.



The other news is that Maggie will have an extra fan in the stands today. Big Brother Tim arrived home yesterday after a year away at school. Whoo HOO! Maggie is a happy girl. She and Tim have always had a special bond. He will yell louder than anyone.



I know there are differing opinions on the Special Olympics. It still keeps kids separate. But my attitude is better separate and having fun than included and sitting on the sidelines.



Whatever your point of view, I have a suggestion. If you ever get a chance to go the Special Olympics, do it. Try to catch the opening ceremonies if nothing else. It makes your heart soar to see all those smiles.
Maggie crossing the finish line last year

Take a Deep Breath

When Maggie came home from school yesterday, she was happy and rambunctious. Her breathing sounded thready and loud, though. The nurse and I agreed it was time to change the trach tube. Maggie was very cooperative throughout the procedure.
Changing the tube is easy. Tying it is difficult, especially for a left-handed mom with dexterity issues. The small flanges on the side of the trach have to be threaded with the ties which are then doubled around the back of her neck, threaded through the other side and tied tightly enough to keep the trach in place, but not so tight that Maggie’s neck is constrained. Then it has to be knotted over and over and over again because Maggie did not inherit my dexterity issues. Considering she has cerebral palsy, her ability to undo knots, zippers, buttons etc is unbelievable.
For a planned trach change like yesterdays, we get everything ready ahead of time to make it easier. The trach is threaded on one side ahead of time so things go quickly. That way I can hold the trach in place with one finger while I pull the ties around and thread it through the other side. In an emergency change, because of blockage or breakage, it is a bit more difficult. You have to move fast and just have to get the new one in immediately. Trying to secure it is very difficult because you need three hands, one to hold it in place and two more to thread the thing. The emergency likely means Maggie is thrashing around or crying, which adds to the challenge. They do make Velcro ties that are 1000 times easier, but those will not work for Maggie. She LOVES ripping Velcro and we would be in an emergency situation every two minutes.
The trach is changed at least once a week, and really more like every 5 days. That seems to be the period of time she can go without sounding like a Mack truck when she breathes. The nurses are not licensed to do the trach changes (though they can in an emergency) so that means I have done this probably 200 times in the past two years. I am good at it, but it still gets my heart rate up.
That trach change lasted about 12 hours. I heard the nurse yelling for me at 5:00AM and came running downstairs. The new trach broke, the tie pulled through flange, and she was holding it in place. Because she was there holding it I could prepare the new new one and start the procedure all over again. Heart rate goes just a little faster when you are pulled out of a dead sleep.
Now it is 6:02AM and I have read my email, checked facebook and written my blog. The coffee is ready but somehow, I am not interested in that first jolt of caffeine yet. I feel like I have already had 10. What I need to do is take a deep breath – and be glad I can do that without plastic and ties in my neck.

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.**
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*before you comment, please know I am only kidding about grounding her

**this is true.