Happy New Year

I cannot believe this year is over. And what a year it has been. The country changed: the economy collapsed and we made a historic choice electing our new president. My household changed too.

With both boys away at school, the dynamic of the household changed. Poor Maggie stuck here with just her old parents. It took us a while to get into a new rhythm, and we are still tweaking it. Just as we seem to achieve it, they come back and we start over again. Maybe that is the rhythm.

Maggie’s overall health changed too. My love/hate relationship with her trach continues. It is very difficult to maintain her trach and I am tethered to her by the length of a suction cord; but the proper care keeps her healthier. Yes, she has been on antibiotics for 6 weeks now, but we can handle it here.

Maggie is almost 15 and 2008 is the only year of Maggie’s life that she stayed out of the hospital. She has had healthy years in the past but has never gone an entire year out of the hospital. In 2007, Maggie was an inpatient for at least 60 days. In 2008 – zero. That is remarkable. We had lots of outpatient stuff, but that doesn’t count. She slept in her own bed every single night of 2008.

The nursing situation changed as well. More responsibility falls on my shoulders. I have to find, hire and fire the nurses that care for Maggie. I have to pay them myself and then seek reimbursement from the state. It is a ton more work, but we have had much more reliable shift coverage since then. Her nurses love her and take good care of her.

In addition, in 2008 I started writing this. It is very cathartic for me. I have *met* so many new people because of this and I appreciate all the support and feedback I get from all of you.
Happy New Year everyone.

Teach your Children well

We went to Mass at St. Ignatius on Christmas Eve. St Ignatius church is an amazing place. My family frequently went to this church for special occasions, including my dad’s funeral mass. The place means a lot to my family and to about 10,000 other families like mine. The church is visible from many parts of the city because it sits on top of a hill right in the middle of town. Our house is just a few blocks below it and we can see it out the back windows upstairs. Though not politically correct, the church is lit up at night and it is spectacular. It is also enormous. I think the church holds something like 3500 people. On a regular Sunday with the regular churchgoers it seems almost empty; but on Christmas, the place is packed.

There is a Christmas Mass at 4PM on Christmas Eve. That is perfect for families who want to go but cannot get everyone to church on Christmas morning. It is perfect for us too because we start our Christmas with that Mass and come back here for Christmas Eve dinner. As I noted before, Maggie was well enough to join us this year, so everything felt right.

There were HUNDREDS of little kids there. They were all dressed up and running around. It is very cute. They stare at Maggie open mouthed, which is not that cute. She sits in her wheelchair in the aisle, so she is quite visible to all of them. The bravest kids walk right up to her chair and start investigating all the nooks and crannies. We are talking little kids, maybe 1.5 to 2.5 years old. It does not bother Maggie and therefore it (generally) does not bother me. (Ok, it does a little). I understand that Maggie is different and her wheelchair is a HUGE draw to the children. I guess I do not always understand their parents. Or many parents.

One little boy wandered by uninterested in Maggie. He was about three. He walked up the aisle, back down and up again. He was looking for his parents. I watched his face change, saw the lower lip go out and knew he was lost. I told Steve to watch Maggie and approached him. “Do you want me to help you find your mom?” He nodded and took my hand. We walked up and down a couple of aisles. I presumed I would see his mom or dad frantically looking for him. Nothing. I walked across the back of the church and asked the people standing if they knew to whom he belonged. Nope. They thought he was with me. We went half way to the front to the church and I picked him up figuring again, that I would be able to see someone searching for him and he would be more visible in my arms. Remember, there are over 3500 people in this church. Nope. I asked him his name, told him mine, and said, “Let’s go up another aisle.” He was scared to death and trying not to cry.

We walked around for at least 10 minutes. I went farther across the back of the church when suddenly a man appeared, grabbed the child and said to him angrily, THIS is why you don’t wander away from me.” Not a word to me. Not ‘Thank you’, not ‘Merry Christmas’, not ‘Keep your hands off my son’, Nothing. He just grabbed him and walked away scolding the frightened child. I just stood there and quietly said to no one, “You’re welcome”. A woman standing next to me saw the whole thing and just said, “Poor kid.” My thought exactly.

I missed a good portion of the mass dealing with that little guy. That is fine, but his dad was a creep. I am sure his father was frightened and I hope he had been looking for him the whole time, but … please.

You do not know what you have there, mister. He is a perfectly healthy little boy who needs you to tell him he is safe. He needs you to keep him safe. Do not blame him when you screw up. Pay attention. Be a responsible parent.

I made my way back to my family and sat down. I just shook my head and watched the kids investigate Maggie’s chair again. It did not bother me so much after that. They may have been slightly inappropriate and their parents seemed to encourage the inappropriateness, but at least those parents were watching their children.

The Sounds of the Season

Christmas is here. I’m wondering if I really finished my Christmas shopping. We will soon see.
Today we will head to the Christmas Mass at 4:30. Maggie is coming. Maggie and church have an interesting history. She used to come with us all the time. But things changed over time. She hasn’t been to church in a long time.

When she was little people smiled sweetly at the little girl in the teeny wheelchair. One older man at our former church used to hand me money occasionally. That was bizarre, but very sweet. I would tell him no, but he was very insistent. I just threw it in the collection box over the protests of the boys who were quite insistent the man thought we should buy doughnuts.

After a couple of years Maggie found her voice. She could never “talk”, but she could really scream. And the quiet confines of the church made for great acoustics. Couple that with mom trying to get you to shut up and you have the perfect setting. She wasn’t upset or angry. She was doing a comedy routine for everyone in the quiet place. She thought it was hilarious. People stopped smiling sweetly. Maggie was disruptive. We would start out all together, but I would generally leave with her and walk around the neighborhood until the boys came out.


Now she has the trach and she can’t make any sounds. Her screams have been silenced. Ironic, isn’t it. Maggie still squirms and causes all sorts of trouble, but no one can hear her so they are back to smiling sweetly. Of course the noise of her screams will be replaced with the motor on the suction machine, but that’s only occasional. Tonight at Mass the little kids will be all dressed up and staring, mouths opened, at Maggie and all her paraphernalia.


Good times.


I hope the man who gave me money comes.


None of it matters. It’s Christmas and the church will be beautiful, the music will be beautiful and the peace of the Holiday will finally settle in.


I hope you all have a very Merry Christmas.

Tea for Two

Christmas is all but here. The house is still a mess but we are ON IT. There is still a lot to do, but this is the crunch. It all gets done, or not, but it stops being important. This morning I’ve done three loads of laundry, made tonight’s dessert (apple crisp), made the sauce for the Christmas Eve Ravioli, talked to the doctor , made French toast for the boys, cleaned the kitchen and taken care of Maggie. It helped that I woke up at five coughing and could not go back to sleep. I should crash around noon.

Maggie is sick AGAIN but we are on that too. I left a message for the nurse at 6AM knowing I would hear back this morning. I was crossing my fingers that they would not want me to bring Maggie in today. Lady luck was with me. They are ordering two more antibiotics with instructions for me to bring her into the hospital if it gets worse. It won’t. The pattern for the past two months is that she’s symptom free as long as she is on antibiotics. The last one stopped yesterday and today she's sick again. It has been a long time though, and this bug is stubborn. I told them to make sure to give me enough juice to keep her home until Friday. You really do not want to be in the hospital at Christmas. Especially if seniority is a factor in determining who gets to take the holiday. The last thing I want is a 12-year-old intern telling me what to look for. Why thank you Dr. (Doogie) Howser, but we know.

One of the million things I am doing today is going to High Tea at the Garden Court in the Palace Hotel. Two of my sisters, one niece, my mom and I are going. It was sort of a last minute idea so we could not coordinate with everyone. (There are two other sisters and many more nieces). If this is fun, we will try to plan it earlier next year so more folks can join us. We invited the boys too, but surprise surprise, none of them wanted to come. I also decided Maggie is not coming. The hassle of getting her there coupled with the exposure to all the germs, especially in light of her overall health issues made that decision easy. Besides, I’m not sure what they would all do when the suction machine started whirring. Ha! I like the image of that in my head.

We are not high tea type of folk. But what the heck, it’s Christmas. I can stick my pinky out with the best of them.

We are going to have to lay off the scones, though, because tonight, after the tea, my brother, one sister and my mom are going to join us for dinner. I have a beautiful pork roast ready to make. My brother has Tuesday off work and his wife and daughter are away until tomorrow. He has to work on Christmas Eve, so this is our chance to see him in a smaller group. My sister Mary is leaving right after dinner, retrieving her daughter and they are heading back home to her husband and son. This will be a mini Christmas.

That is one of the (many) good things about being in such a huge family. The combinations of people make it a different party every time.

And so it begins…..

Sorry, can't make it

Maggie missed a party on Saturday. I feel terrible, but it is just one of those things. Maggie had been ill, but she was well enough to go for a while. It was a reunion of sorts hosted at the house of one of her former and future classmates. Her buddy A is a year older than Maggie is and started high school this year. Maggie will join him next year. Maggie and A have been in the same program for their entire lives, two separate infant programs, preschool, elementary, middle school and next year high school. Other than those years that A went to the next level ahead of Maggie, they have been together. A has a body like Maggie’s that does not work for him at all. Really, there just are not too many folks who are as thoroughly involved as these kids. Those of us with kids around the same age all know each other and help each other out when we can.
We were looking forward to going. A’s house is really designed around his wheelchair, so it is one of the few places we can go easily. On Saturday morning I received a call from A’s sister advising that another individual had sort of invited herself and they did not want us to be uncomfortable. This sounds like I’m the one in middle school, but I knew I could not go if SHE was going to be there. I started spewing out excuses.
This all stems from an ugly incident that happened last spring. SHE was a teacher’s aide in Maggie’s class. She is nice enough, but she's a rather goofy woman. She is a mom herself and her kids attended the same school.
For reasons known only to HER, SHE HIT MAGGIE! On purpose.
She “smacked” her, apparently because Maggie was not behaving while they were changing her diaper. [Side note, Maggie’s behavior can be frustrating]. Please remember that Maggie cannot walk, sit or stand. She is completely dependent on others to do everything for her. In addition, when they screw up, Maggie cannot talk to tell anyone what has happened. As it turns out, Maggie did not have to tell anyone.
When this happened, the nurse was present but because her back was turned, she did not see anything. She heard the slap and her antenna went up, but she proceeded with the diaper change. The nurse was still trying to figure out what to do as the returned to the classroom, when SHE spoke up herself. The woman (perpetrator) announced it to the teacher when she returned to the room. “Maggie wasn’t behaving and I had to give her a good smack.”
Everyone in that room is a mandatory reporter, the nurse, the teacher, the other aides, everyone. They are obligated by law to report any incident of abuse or suspected abuse. The teacher went straight to the principal. One would think that protocols are in place to protect the child, the accused and everyone else. If they are in place, they failed miserably. The principal admonished the teacher not to tell the family and that he would handle it. He did nothing. The woman returned to the classroom to work with non-verbal children who are totally dependent on the adults in the room for everything.
That means Maggie came home from school that day and no one told me anything. The nurse, who rides the bus with Maggie, did not mention a thing. There was no physical evidence that I ever saw. Maggie was subdued, but I attributed that to overall health issues. When I should have been comforting Maggie I was joking around and telling her to cheer up. When I realized that, I felt terribly guilty. She should be able to count on her mom when the other adults in her life scare her like that.
When SHE (the perp) returned to the classroom the next day, the teacher was very upset. It was apparent that nothing was going to be done. He called me. In all honesty, my first thought was “don’t make waves”. Why? I do not know. However, it did not last long. The betrayal was so complete that it took awhile to process all of it.
There was no question this happened. The woman herself admitted it repeatedly. Not only did she do it, she did not think it was wrong, notwithstanding the laws against it. I did not want her anywhere near Maggie
I contacted the principal, who said all the right things, but did nothing. I told him it was not safe to have her around children at all, but particularly not around non-verbal children who cannot protect themselves. The woman was still in the classroom; and, now she was very angry with the teacher and with me for “turning on her.” SHE was the victim. Now I really wanted her away from Maggie.
The principal stopped returning my calls or emails. Nice. I emailed some folks higher up in the district. Eventually the woman was placed on (paid) administrative leave and finally reassigned to another classroom. Of course, that meant that Maggie’s teacher had one less aide in the classroom. Essentially he and the children received the short end of the stick on that one.
This all happened last spring. The woman is working at another school. My concerns were never formally addressed, but I did not need that. I just needed to know Maggie was safe and I could not feel that with her around. Once the new school year started and she was really gone, I put it out of my mind. In fact, I had not thought of her or that incident in months until I received that phone call Saturday morning. I am ready to keep it behind us, but a “reunion” is not something I am interested in.
I learned today that SHE did not come to the party after all. Maggie missed it for no reason. It does not really matter, but it makes me sad and a little angry that this woman still has any control over me and my daughter.

The Weight of the World

Maggie is better. She does not have pneumonia, but she's on antibiotic #4. Hopefully this is the ONE. They did do a culture, so if this isn't it, we will know what will work in a few days.

Today is the last day of school before the Christmas Break. Any other day I would keep her home, but I let her go today. I have to go by the school now to retrieve the power wheelchair so Maggie can practice over the break. I can check on Mag at the same time and drag her out of there if she's not doing well. Of course I can't fit both Maggie in her regular chair AND the power chair in the van at the same time, but we will figure that out. The power chair can come home on the bus if need be.

Unless you have to deal with it every day you cannot imagine how big all this equipment is. I learned yesterday that Maggie's wheelchair weighs 97.2 lbs. That's empty, WITHOUT Maggie sitting in it and without all the machines hung off the back. Maggie weighs 61.5 lbs and the suction machine, oxygen tank, communication device, tray , pole and emergency trach supplies always on her chair weigh another 20 lbs easily. Moving Maggie around requires manipulating almost 200 lbs.

Of course it's on wheels and designed very well, but perhaps you can appreciate the frustration we experience when we encounter the barrier of a step or two. There's a reason for curb cut outs. We cannot just lift her. And she's tiny. Imagine a grown man or woman.

Maggie cannot stand up or even sit up on her own. Therefore in order to weigh her, we simply just put the chair on a special scale and subtract the weight of the chair. Every time we get a new chair or change it around at all we have to re-weigh the empty chair. I had a sticker on the back of the chair with the weight, but it must have fallen off. Besides, I think we've added an additional part of the head piece since she was last weighed anyway. I'm putting the information on the back of the chair and taping it over with a see through tape so we don't have to do that again any time soon.

The medical assistant was not pleased at having to wait for us to unload Maggie and take all the equipment off the chair so we could weigh it. She suggested I get on the scale alone and then get on again holding Maggie.

Um....no. Thanks, really, but no.

The thought of my weight blasting through the clinic on the giant digital read out was not the least bit entertaining. Besides, we needed to know the information for the next time.

She was not happy with me and decided to stand impatiently while we stripped the chair of the equipment. I'll just unload everything, and take Maggie out. Once that was done she changed to a snails pace. I was trying to hold Maggie, who was coughing and squirming while the woman very S L O W L Y weighed the chair. By the time I put her back in I think I lost a pound or two.

SO it wasn't all for naught.

Arrgh

It's Thursday and Maggie's class is having it's Holiday party. She has gifts for everyone - well except for the two boys, we were going to get those this morning. But no can do. Maggie is too sick to go to school. She's been fighting this on and off for weeks. In fact she's been on three different courses of antibiotics but it's just getting worse. We are headed to pulmonology later today. They need to figure out which antibiotic will kill this stupid bug which I fear is now a pneumonia. She's pretty sick.

Because of the inefficiency of the system, the bus still showed up at my house and rather than waste the trip, I had the driver bring in all the gifts. The boys will have to wait, but the teacher will make sure they don't realize the girls are getting something. I hate to be mean, but that's not too difficult with these students.

The worst is yet to come, though. Maggie is too sick to go to school, she's missing her party AND her computer crashed. That means she can't communicate and it's driving her crazy. I'm emailing the speech therapist who has everything on back up. I have to get a hold of her before the school closes for the break tomorrow.

On a happier note the elevator guy was here this morning by 8AM. Turns out the gear was covered in ice. Easily fixed.

I still have a thousand things to do around here to get ready for Christmas. Oh well, it's entirely possible that some of it does not get done.

Que sera sera.

Ingress and Egress

Getting Maggie into the house used to be a multi step process. Once we arrived home we had to do the following: undo the seven buckles on the straps that hold her into the wheelchair, lift her out, carry her up a flight of stairs, lay her on the floor of the living room, go back downstairs, carry the chair up the stairs, pick Maggie up off the floor and strap her back into the chair. That all changed about four or five years ago, when we had the lift installed in the back yard. That thing saved our back and our sanity.

When we installed the lift Maggie was about 10 and weighed approximately 35 lbs. Her wheelchair weighed more than she did. She was not heavy, but the constant lifting was getting a bit more difficult. We were lifting both her and her wheelchair numerous times each day. When we looked ahead, we knew we could not keep it up. Good thing, now she weighs over 60lbs and her wheel chair is well over 70. Without that lift, we would likely not still be in this house.

The lift is nothing fancy. It is a platform lift like you might see in a department store or church. The door on one level locks behind you and the door on the other level will not open until the platform fully arrives. It goes slowly, but it is perfectly fine. It is outside and open to the elements. That’s not too much of a concern because we live in sunny California. Oh wait, that doesn’t apply to San Francisco. Even with the rain and the fog there are very few times we can’t brave the elements for a few minutes. A huge downpour is a drag and I have at times sent the empty chair down the lift and then carried Maggie down the garage steps. Folks have suggested a cover for the top, and we have considered it; but I resist it because the only light we get is from the front and back of the house and I do not want anything to interfere with that.

This week has been wild weather wise. There have been downpours, sudden hailstorms and very cold temperatures for San Francisco. I’m not trying to compare to what many of you have to deal with weather wise, but remember we only have clothing to fit where we live and it has been insufficient this week. The cold temperatures have been wrecking havoc with things designed for a more temperate climate. Turns out the lift might be one of those things.

We returned from an outing the other evening. It was 6PM, very cold and of course very dark. It had been raining all day, but it stopped on our way home. There was just time to get up the elevator and stay dry, but the clouds threatened above. Maggie and her nurse Fely were in the lift and I brought the rest of her equipment upstairs. I remembered then that the lift had been a bit sluggish the day before and went on the back deck to see how they were doing. It was moving slower than usual. They were about 5 feet from the top and it stopped dead. This was not good timing. Rain and hail were looming. I tried all my usual tricks, which is nothing more than turning it off and on again. Nothing. Maggie was laughing and the nurse was getting a little panicky. I could almost reach Maggie and I tried to get the top door to unlatch so I could grab her, but there was no way to open it with the platform below the landing. I looked at the threatening clouds and considered how long it would take the elevator company to arrive. I considered 911, but….really? I tried again and the platform moved about an inch. It took several more minutes, starts, and stops, but the platform finally reached the top and they were free.

Maggie was still laughing and Fely was visibly relieved. Thankfully, it did not rain until we were back in the house. If it had, I would probably be looking for a new nurse about now.

So, I am home today waiting for the elevator guy. I can’t go out until I know Maggie can get back in.

Christmas Shopping, sort of

I went downtown this morning. I still have several things to get before Christmas. I cannot blame the crowds, that’s for sure. It’s December 16 and there were very few people shopping in downtown San Francisco. It’s not good out there, folks.

I met Maggie’s class on a field trip to see the Christmas windows in Macy’s at Union Square. I was downtown anyway, so I hung out to wait for them. They came down on the streetcar, which stops about a block from the school and delivered the whole group within a block of Macy’s about 25 minutes later. Not bad. Apparently, Maggie kept ringing the bell for the streetcar to stop all the way through the subway. She thought that was hilarious. Fortunately, the driver did not stop in the middle of the tunnel.

Riding public transit with wheelchairs is a bit of a roll of the dice. Half the time the elevators to the street are broken forcing people to go an additional stop before they can get out of the subway. (They can be like Charlie on the MTA and just never return.) But not today. The elevator worked and they came rolling up Stockton Street toward Macy's where I was waiting for them.

The Macy’s windows are very sweet. The windows have the kittens and puppies from the SPCA. It is always fun to see the little animals as well as the smiles the faces on all the folks watching them. You can see Maggie at the window with the puppy named “Miss Piggy” and the kittens just off to the side.

Representatives from the SPCA are there to hand out information on folks who want to adopt animals, but they do not adopt them right there. It is too easy for someone to be caught up in the “cuteness” of it all. The SPCA does not want a person to forget that they are adopting a live animal who needs care all year, not just on Christmas morning.

The kids liked the windows, but as cute as the puppies and kittens are, they really cannot top the streetcar ride

Maggie did not have any actual shopping to do but her classmate Liz was on a mission. We went into Macy’s to make the purchase. The elevator came and we loaded the three wheelchairs on with the five adults in tow. I’ll tell you what; people get out of the way when this entourage passes by.
Trying to beat the quickly approaching rain, we dashed up to Union Square to get a picture of the group in front of the giant tree. We got it. (Maggie's in the pink blanket). The class disappeared back into the subway, and I hopped on my bus and headed home.

A nice morning indeed, but I did not get much shopping done.

Dream Weaver

Dreams are funny things. We sleep but our brains stay active. Various things from the day pop up in the strangest contexts. Things we anticipate dread or just have to do also have a way of weaving into the stories of our subconscious. Many people cannot remember their dreams, which is unfortunate. Dreams are very entertaining and very instructive.

My husband, mother, siblings and college roommates can all attest to my wild dreams. I used to scream in the middle of the night, generally because something was falling on me. Never figured that out, but it happened all the time. One night I actually grabbed my sleeping husband and flung him to the other side of the bed because I thought a telephone pole was falling on us. I woke up, realized it was just a dream and went right back to sleep. He stayed wide-awake for the rest of the night, and slept with one eye opened for several nights after that. Those freak-outs stopped about 20 years ago. They never bothered me, but anyone who ever shared a room with me will recall those nights with wide eyes.

These days my dreams are like my life. I am running as fast as I can and not getting anywhere. Last night was a good example. I dreamed it was morning and I was trying to get Maggie ready for school and out the door. (I have written about my morning ritual before. Suffice it to say it is a ridiculous flurry of activity over a 90-minute period.) In real life, we go out the back door and down the elevator/lift outside, into the back yard and snake our way through a junk filled basement/garage to the front of the house. This is a distance of about 15 feet vertically and less than 50 feet horizontally, but it is slow going. Once in the chair, it is at least three minute before we get outside to the front of the house. In my dream, the bus was outside waiting for us and to save time I was going to go out the front door. Never mind the 12 steep stairs, I had to get outside or Maggie would miss the bus. The stair issue was never resolved or even addressed in the dream because I could not get the door opened.

In the dream, the front door would open only a couple of inches because Maggie’s supplies were in the hallway blocking the door. Maggie’s supplies come monthly from various medical supply companies and they take up a lot of room in a crowded house. The nine cases of liquid food next to the three huge boxes of diapers, catheters, under pads and the respiratory supplies would completely fill my hallway if I let them. We try to get them put away as quickly as possible, some in her room and the vast majority in the (junk-filled) basement. Try as I would I could not get the door opened to get Maggie to school. Steve and the boys were frantically trying to get them out of the way, but the bus driver drove away while I watched, helpless, from behind the boxes.

I woke up with a start and jumped out of bed to get the morning ritual underway. It went smoothly. The rain stopped long enough to get her down the elevator and we were outside 10 minutes before the bus arrived. Maggie laughed at the dog chasing the toy I was tossing. All quiet on the Western Front.

No in-depth dream analysis necessary here. I get it. I am trapped in the house because of Maggie. And the walls are starting to close in. That bugs me, of course, but I accepted it a long time ago. The troubling thing about this dream was Maggie being stuck too. I think it was a combination of the rain and the knowledge that school will be out after Friday. It is difficult to get her out of the house in the cold rainy weather and she gets extremely bored if she does not go out. I have to figure out ways to keep her entertained over the break. Good thing the boys are coming home. That will help.

How much time do we have?

Christmas break starts in a week. Maggie will be off school for two weeks. The first week will be great because there is all the activity getting ready for Christmas. The second week will be more difficult because we will have to find things to do.

Maggie loves to go Christmas shopping, or any shopping. The benefits of Maggie coming along on a shopping trip: she has a great time, and parking is sometimes just a little bit easier because we can use the handicapped parking. The drawbacks of bringing Maggie along maneuvering the wheelchair through crowds and over filled stores is a pain, people gawk, especially when she needs suctioning, and Maggie’s schedule means we can be out of the house no more than three hours.

The wheelchair issues are what they are. If I let that stop us, we would never do anything.

The gawking is tiresome. REALLY TIRESOME. It is always there. Always. On a good day, I ignore it. On a bad day, I stare back. On a very bad day, I say something. (Some of those comments have been priceless, but I will save those for another time.) Good bad or indifferent, we cannot run our lives by the bad manners of others so that does not stop us.

Though less obvious to the casual observer, the toughest issue is Maggie’s schedule. Maggie’s schedule runs everything. She has to be tube fed every 2 hours and she has to be changed and catheterized every three. The tube feeding I will do anywhere, though it exacerbates the gawking. The changing and catheterization is a whole other story.

Maggie is 14 years old and wears diapers. She will always wear diapers; I am used to that. Changing a diaper of a 14-year-old girl is not something you can do just anywhere. Changing her requires many steps: 1) finding a place that is private and safe; 2) unstrapping the seven buckles on her chair; 3) lifting her out; 4) getting her undressed and cleaned up; 5) retrieving all the necessary equipment, diapers, catheter medications etc; 6) reversing steps 2-5 and finally, 7) wiping the sweat from my face.

This takes two people when we are out. Each of us can do on our own at home, because everything is set up for this; but when we are out there is no way one person can do it alone. At least I can’t. If Steve is with me, we cannot use the public restroom because they are single sex. We cannot use changing tables anyway, because they are designed for little babies, not 62 lb/54 inch tall young women. Usually we cannot get past step one.

Because of this, we plan outings around her changing schedule. It is the last thing I do before we leave and the first thing I do when we get home. That allows us to maximize our time out of the house. But it also keeps us pretty close to home. Driving time is included in this allotted time period. Unless we are heading somewhere that we know we will be able to change and cath her privately, we have to be back. Besides, after three hours, Maggie really needs to get out of the wheelchair and change positions for a while.

We have learned, therefore, to be efficient in our outings. They are generally planned with a single objective and a possible second, time permitting. If one of use needs to get a lot of stuff done, we have to do it without Maggie. It would be nice to have a little spontaneity with her, but it is just not part of the game plan. While this bothers us, Maggie does not care. She loves going out, no matter where, no matter why, no matter with whom.

I need a few short outings for the week following Christmas. Maybe she will want to return her gifts. Oy!

Yes, Virginia

Occasionally you see a news story that restores your faith in humanity. They play more this time of year because people are in the “spirit” of the season and are trying just a little harder to consider their fellow man. What is nice to remember is that for every story you see on the news there are 50 more that are happening out of the spotlight. I witnessed one of them today and I am feeling very much in the Christmas Spirit as a result.

Maggie went to a party today. It does not make the news, or at least it hasn’t in the past; but it is one of those stories that just makes you feel good. It is a Christmas lunch for hundreds of developmentally disabled people in San Francisco. It is hosted by the Department of Parks and Recreation, but the food is prepared by the St Francis hotel. It is then ferried to the event and served by members of Company 9 of the San Francisco Fire Department. Company 9 has been doing this lunch every year for 41 years. That is a lot of good cheer.

Last year was the first year Maggie attended and the teacher encouraged me to stop by. It takes place in the Hall of flowers in Golden Gate Park, about a ten-minute walk from my house. I assumed it was something for a few classes of kids in special ed and got there at the end to say hello. That assumption was way off.

What to my wondering eyes did appear? It was so sweet and inspiring that I made certain to arrive on time this year to enjoy the whole event.
There were about 500 people at 20 long tables. The people are all ages sizes and abilities, but the only “non-disabled” are maybe 100 caregivers and people working at the luncheon. Maggie and her classmates are the youngest ones in the room. It is some high school kids but mostly adults. This was a party for the developmentally disabled population of San Francisco. And what a party. There is music and dancing along with a hot turkey lunch with all the trimmings.

There are people in wheelchairs moving to the music alongside people with Down’s syndrome, autism and a host of other developmental issues. And everybody is having the time of their lives. Sure, occasionally someone is over stimulated and freaks out a little bit, but it does not faze this crowd. For the most part they’ve all “been there, done that.” It is just part of the deal. It does not even slow down the party for a second.

The only thing bigger than the plates of food are the smiles on the faces of the guests of honor. This is their party. They do not have to sit on the sidelines and “behave” while others have fun. This is their time to cut loose and have fun. The dancing is done with wild abandon until the food is served. The room becomes more subdued for a while until the arrival of the Big Man.

For those of you who doubt the existence of Santa Claus, I suggest you attend this luncheon next year. Santa enters after lunch in the company of several firefighters. They are just there to make sure Santa can get all the way into the room before he is surrounded. Once he is safely in the middle of the dance floor, the firefighters quickly back off and Santa is there for the guests. Hundreds of developmentally disabled adults who are beyond excited to see him almost immediately MOB him. It is the Christmas magic of the movies, right before your eyes.

Yes, Virginia, there is a Santa Clause. A whole bunch of them.

I saw them today.

Find the spirit.

I haven't dropped off the face of the earth. Just running around like the proverbial chicken. I'll post later today, I promise. Maybe.

Custom Made

Maggie is not an off the rack girl. Things designed for the general public are generally not for her. Her wheelchair is customized, and our van is customized. Our house is not, but it has been adapted as much as possible. It is crowded, and making things fit is a constant struggle, especially because as she gets bigger, her equipment also grows. We routinely rearrange things, pushing chairs or table aside, just to move through a room.

The house is tall and narrow, exactly what you do not want when you have a wheelchair user. It is an ongoing challenge to make things work to accommodate her needs and her equipment. We have added a deck outside and a lift to get her to the first floor of the house. The only bathroom downstairs was remodeled to add a shower so we do not have to carry her upstairs. The access to that bathroom was changed around so we could get into it from her bedroom, which used to be the breakfast room.

Changing the function of a room is easy enough, but there are additional considerations. Taking away the breakfast room had a ripple effect. We made full use of that room as a catchall and family area. That is gone; now the entire downstairs has become the catchall. We eat all our meals in what is (or was) the formal dining room. However, since that doubles as my office our ability to utilize the table for dining is … infrequent, at best.

Maggie bedroom is the only direct access to the back deck so it functions as a pass through for everyone. Further, because it was designed as a breakfast room, her bedroom is not very large. Adding the shower in the bathroom ate up even more space in her room. None of those issues standing alone presents insurmountable challenges, but we reach critical mass when you combine those with the lack of any closet in her room.

No closet in a teenage girl’s bedroom!?! Imagine that for a minute. Nowhere to put her stuff. Nowhere to remove the equipment she doesn’t use every day. Nowhere to hide the machines that keep her fed, breathing, medicated and measured. Everyone can see the ceiling lift system, oxygen tank, pulse oximeter, nebulizer, feeding pump, suction machine and the machine that provides the mist while she sleeps. (I just realized I don’t know what that’s called). This little room looks like a hospital room. And there is nothing we can do about that.

The best part of her room is her bed. It was custom built for her and for this house by Steve. It is great and the fact that dad made it is cool. Part of Maggie’s disability, personality and vitality is her almost constant movement; this girl is in motion all the time. The movements are not always controlled and keeping her safe from falling is a challenge. The bed has high rails without looking like a crib, and it is high enough off the ground that the nurses (and me) are not constantly bending over to tend to her needs. Best of all there are drawers beneath it to store tons of medical supplies, tubes, etc. This maximizes the space and keeps it from looking too institutional.

Maggie loves this bed. She can move all she wants and toss things over the side with reckless abandon, and she does, regularly. This bed is what makes Maggie’s room MAGGIE’s room and not a converted breakfast room/pass through. This is what makes it a custom space.

Also.....Thanks for all the inquiries yesterday. Maggie and I continue to fight off whatever this bug is. The doctors changed her antibiotic, so hopefully she won't get any worse.

Just a virus

It’s Monday. Really feels Mondayish. Some little bug is attacking me from the inside out and making me crankier than usual. (If indeed that’s possible).

It’s attacking Maggie, too, I fear; or something is.

Maggie was on antibiotics for two weeks to address a fairly constant case of tracheitis that rears its head every so often. The drugs worked like a charm and she was better. As soon as the course finished, though, the symptoms came back and the doctor restarted her antibiotics last Thursday. This time they don’t seem to be doing anything. I have a call in to the pulmonologist. It could be that she needs a different drug or that she’s coming down with a virus and antibiotics will not work. Oh joy.

When the boys were little and got sick we would take them to the doctor after several days of illness often only to hear “Don’t worry, it’s just a virus.” Those word were a relief for my healthy boys, but it’s different for Maggie. Now I dread hearing those words.

Just a virus. Just a virus. HIV is just a virus too.


Maggie’s care is non stop when she’s well. When she’s sick, it’s far more difficult, and often a little frightening. A cold for you or me is different for her. She gets so sick so fast. She can end up in the hospital as fast as you can snap your fingers. Then you get into the hospital and get even sicker from the exposure to all the germs and bacteria floating around there.

Last night she was frantic and inconsolable. I was not sure why but as a precaution I changed her trach tube. We are supposed to change it every week and it had only been three days, but I just had a feeling. That helped a lot. The inside of the tube was … well let’s just say it needed changing. That means Maggie was getting less air than usual because of the schmutz in the tube. That’s likely what was making her frantic. I know it would do that to me. After that she fell asleep lying on the couch with Dad. She woke up when the night nurse arrived and seemed back to normal and had a pretty good night.

The question, of course, is why was it so bad so fast. Just a virus?

This morning she was rather subdued, which is definitely not normal for her. But she seemed ok. I sent her to school but the nurse has already called once because now she has a low grade fever. So here we go, maybe.

Maggie is fragile. Winter scares me.

Hello, I'm a teenager, remember?

I know the differences between Maggie and other girls her age, but I ask people to ignore them and treat her like everybody else. It is the way we normalize the abnormal situation we deal with every day. I feel righteously indignant when people speak down to her or speak to me instead of to her; and I gently correct them and (hopefully) educate them a little bit. This week I was a little schooled myself. I have not been treating Maggie as a typical teenager at all.

There are some silver linings to our situation. Not just the obvious ones like deep meaningful glimpses into the meaning of life, but practical, every day things. We have to worry about lots of things, but not about many of the things other parents of teenage girls have to deal with. She is safe and protected from the dangers of drugs, teenage pregnancy, gangs and so many other things. She does not go out at night and make us worry about her choices. Her choices are limited by her circumstances, and, in some cases that inures to our benefit as worried parents.

Maggie’s lack of choices in certain things does not automatically to a lack of desire, however. We have to be careful to present choices that she can safely elect within the confines of her reality. She likes Hannah Montana and we need to remember to put it on and not subject her only to classic rock or NPR. We also have to remember that as a 14-year-old girl, Maggie might have some fashion tastes that are not always practical for her wheelchair or available on the sale rack.

Maggie’s cousin Nina is just a year younger than Maggie is and she is the perfect teenage girl. She is cool, pretty and wears the BEST stuff. She was here over Thanksgiving and spent Black Friday with her mom Clare in San Francisco’s Union Square, a shopping Mecca. It was ridiculously crowded. They did some Christmas shopping and Maggie was on the list. With Nina as the personal shopper, they decided to bring Maggie a little up in the world. She needed some boots that made a statement. They bought her a pair of Uggs.

This was a very extravagant gift for Maggie. To be honest I felt like it was too much. That is a lot of money to spend on shoes for anyone, especially on someone who does not even walk. I have never spent that much on a pair of shoes in my life (but I’m cheap). However, that decision was not mine to make. It was Maggie’s. She LOVED them. She wore them to school and all the other girls ooh’d and aaah’d. She has worn them every day this week and probably will for a long time to come.

Today there is a dance at school. Because of Maggie’s cool new shoes, several girls have decided to wear their boots to the dance. Maggie is one of the crowd. That is what a typical teenager wants. It is worth more than any pair of shoes. Thanks, Nina.

Manners/Greetings

Maggie loves the Junie B. Jones series of books. LOVES them. We own every single one of them; in fact, we have duplicates of a couple. Of course, the books are far too young for Maggie. They are beginning chapter books for first or second graders, or the precocious kindergartner. Who cares? Those books have amused her for years.

The main character, Junie B. Jones, (pictured) is an active little girl who gets herself into jams with her curiosity, and her mouth. The books are told from her viewpoint. She is a good kid but something we mothers euphemistically refer to as a “handful.” She says what she thinks, and does what she wants. The books are hilarious, the writing is funny, the stories are clever and the characters are very endearing. All of this is magnified when my husband reads those books to Maggie. He has a voice for each character and uses them with reckless abandon. Maggie howls with laughter through the entire book every single time.

Some people do not like these books because Junie B. does not set a good example. I disagree completely. She sets an excellent example of what a kid really does and why. The author seems to get inside the head of a 6-year-old girl. Her interpretations and reactions are spot on.

As you may be able to tell from the above, we read these books a lot. I mean A LOT. We have tried to introduce other, more mature series. She tolerates Harry Potter but only in small does, and just to appease Dad. Anything else, Maggie just signs NO! NO! She, like Junie B., is a girl who knows what she wants. If Maggie were able bodied, she would BE Junie B. Jones. I am sure of it. And that makes me love this character even more.

At school, the teacher decided to read one to the students. Maggie anticipated every line and laughed before anyone else. She knows them by heart. Her teacher noted her love for this character and Maggie now has some Junie B Jones sayings on her communication device. Ironically, you can find them on the page entitled “Manners/Greetings”

Imagine my surprise when I walked by Maggie yesterday and she hit buttons to say,

“I’m gonna knock you on your can!”

I did a pivot and looked right at her, nose to nose, and said in an exaggerated way,

“Excuse me?”

She laughed and hit it again.

I smirked. I tried not to, but I couldn’t help it. Once she gets a reaction from me, that’s it. We heard that all night. Finally, her nurse, whose first language is not English said, what does that mean? What is a can? I pointed to my butt and she clucked disapprovingly, but laughed at the same time.

I feel sorry for the next doctor to mess with Maggie. She is now armed with an appropriate, if impolite, comeback. She just has to navigate to her "manners/greetings" page. Hmmm. Might have to rethink the placement of that.

Good to the Last Drop

I have a motto. I learned it from a neonatologist in the NICU (Neonatal Intensive Care Unit) when Maggie was first born.

When I first heard it, Maggie was fighting for her life. I was so overwhelmed by the ongoing battle; I was missing some of the little signs that we were winning the war. Doctors deliver news in the same way whether it’s really good or really bad. I know now, but did not know then, that you cannot take clues from their voice – you have to listen to their words. But the words were foreign and scary. In a matter of days, I learned words like gastrostomy tube, colostomy, atresia, anastamosis, ventilator and so many more.

I was overloaded. I needed words like “She’ll be fine” but I was not hearing those. The doctor knew I was an intelligent woman and knew I was not hearing or digesting his words even when it was good news. So he started speaking Swahili. Then I paid attention. And he gave me the motto I have used ever since.

It was so perfect I adopted it immediately and have kept it ever since. The only problem is I can say it, but I cannot spell it. It is a Swahili saying, I think. I do not speak Swahili. I do not spell Swahili. I am not even sure it is Swahili. However it is supposed to be written or whatever its origin, it is my credo. I will write it out phonetically and anyone who can correct it, PLEASE do so. The saying is

HABA NA HABA HU-JAZA KEE-BABA.

Translation: “DROP BY DROP THE CUP IS FILLED”

It is so much cooler to say it in Swahili, though, because in English it sounds like a Maxwell House commercial.

It is positive, it is hopeful. All progress, however small, is a step toward the goal. There are plenty of English sayings with essentially the same message. Every little bit counts. Or even, Slow and steady wins the race. However, they just do not roll off the tongue like Haba Na Haba….

It is versatile. It applies equally to Maggie’s fight for life as it does to cleaning up the house. Any goal at all can be achieved in small steps. I have to do many things today, call my sister Joan to say Happy Birthday, finish a proposed op-ed piece for Advokids, Christmas Shop, clean house, order Maggie’s supplies, find a new nurse, and attend a dinner. Some of it will happen today. Some of it will be completed today. Some if it will be started. But eventually it will all happen because Haba Na Haba Hu Jaza Kee Baba.

Good to the last drop.

Bothering the Boys

I was excited to have the boys home for Thanksgiving weekend, both for my husband and me, and even more so for Maggie. She is leading a pretty boring life these days with her two brothers gone. She revels in the energy that the two of them bring into the house. There is something going on every second and she laughed all weekend.

The only time it is quiet when the boys are here is in the morning. They sleep until noon if I let them. Well, Tim does. Eddie sleeps in, but not as long. Also, he is a man on the go so he often has somewhere to be in the morning. Thanksgiving morning they were snoozing. Maggie and I were in the kitchen “cooking”. I was preparing the turkey, stuffing it, getting it in the oven, peeling potatoes (regular and sweet) etc. Maggie was sitting in her wheelchair pulling everything she could reach and actually hold onto out of the kitchen drawers and throwing them on the floor. The dishtowels are the easiest, but she has progressed to rolling pins, metal bowls, heavy lids to pots etc. I have removed everything breakable or dangerous from that area. She has free reign.

We play this game regularly. I get my stuff done in the kitchen and feign outrage every time something hits the floor and she laughs her head off. I do an exaggerated routine of picking it all up and putting it all back where it goes so she can do it again. She is entertained for a long time this way. With so much prep to do on Thanksgiving, it was a win win.

Unless you are college boys trying to sleep in on Thanksgiving.

I never gave a thought to the boys. It did not really dawn on me that they could hear it all the way upstairs, and frankly, if I had thought of that I probably would have done it anyway. It is almost impossible to keep Maggie entertained without sitting next to her and holding her hand to keep from pulling the trach out. I had stuff to get done.

Eddie came down first and looked at Maggie and said “what do you think you are doing? I was trying to sleep.” She just looked at him as if to say “Bonus!!” And laughed for about 5 minutes. Later Tim came down and said, “Jeez, mom, how many things are you making. You’ve been using every pot in the house.” Not me, dear, talk to your sister. He put his fist right next to her nose and said, “What’s the big idea?” She was laughing so hard I almost had to turn on the oxygen.

Not only did she get to throw the pots and bowls, she got to be the annoying little sister.

Truly something to be thankful for.

Accepting Tolerance

I have been wrestling with something for over a week. Recently I heard a man thanking people for being tolerant of his disabled son. I was disappointed in his choice of words. I ‘m not really sure why. The people he was thanking were not merely tolerant of his son; they accepted, respected and loved him very much. It seemed like the word tolerant really sold them short.

Do not get me wrong. He meant it as a compliment and he was sincere in that offering. It was just so…..demeaning in a way. But why? I wondered what made me place such a sour interpretation on his intended kindness. This wondering sent me to the dictionary to try to figure out what was bugging me. I looked up the words “tolerate” and “acceptance” and learned something interesting. The difference in the words lies with the person doing the “tolerating” or “accepting”

The definition of “tolerate” is: to allow the existence, presence, practice, or act of without prohibition or hindrance; permit. To put up with
“Acceptance, on the other hand means: the act of taking or receiving something offered
favorable reception; approval; favor.

Tolerance is outward. It indicates superiority. I will “put up with” you. I will “allow” or “permit” your differences. The person tolerating has all the power in the relationship.

Acceptance, on the other hand is inward. One who accepts “receives” “approves” “favors”. The person is not giving anything, but receiving what is offered. It is not superior, but more humble. It suggests parity between the parties involved.

Tolerance is courteous. Acceptance is kind.

I accept your tolerance, but expect more. I offer courtesy to expect courtesy from friends and strangers alike. I presume people will tolerate my daughter’s differences but I expect a little more, particularly from people who know her or who know me. And she usually gets more. Even if folks do not completely understand her differences, they respect her as a person and accept her for who she is. For those who have reached the level of “acceptance” and even “love” calling them merely tolerant is not enough.

Admittedly, this is splitting hairs and I was probably the only one who felt uncomfortable with his choice of words. Nonetheless, I was happy to learn I was not just being mean spirited (which has been known to happen). There is a difference in the words. Now that I’ve thought about this more, this choice of words may have revealed more about the speaker than about those he was thanking.