Wednesday, December 30, 2009

Watching the detective

Receiving the award for least observant family of 2009 - the McDonalds of San Francisco.

I told my neighbor about the Sees candy find in the stocking and she started laughing. She and her husband put it there on CHRISTMAS EVE. That's 6 days ago. I first noticed it this morning. They have been hugely entertained watching us come and go through the front door dozens of times since they put it there. Never noticed it. Not me, not my husband, not the kids, not my mother, brother sister in law, niece, Tim's friends, Eddie's friends, four different nurses or a couple of delivery guys.

Best hiding place is always in plain sight. Especially with the ever vigilant McDonalds on the case.

What to my wondering eyes....

I arose at the usual hour this morning so the nurse could go home. She wasn't quite done with her paperwork, so I padded to the front door to get the newspaper. As I reached to get it I figured should take down the giant Christmas Stocking that was adorning our front door. The rest of the decorations will come down this weekend, but I am rounding up some of the extraneous ones so I don't forget to put them in the box(es) when we pack it all away.

As I reached for the stocking I hesitated. Why....there was something in there! It was a pound of Sees Candy. (For those of you who don't have Sees, I am sorry for you. It is delish). The box was wrapped in the distinctive Sees Christmas wrap and just sitting there outside in the cold. I grabbed it and went inside. No card. Just a happy red box of assorted chocolate-y goodness.

It was a lovely surprise. As soon as I open it, it will be gone in a WHOOOSH! (too late just did and took my favorite...hehehhehehe)

How long was it sitting there? Since Christmas? Doubtful. Someone here would have noticed it or, if not, some passer by would have snagged it. Could it have been there when I came home last night and I just didn't notice? Possible. Is that why the dog was going crazy after I came in last night? I don't think so because I was sitting on the couch and can see the front steps and would have seen someone place it there.

My suspicion is that it came this morning from Peter, the guy who delivers the newspaper. He has been delivering our paper for years. Every year he puts a Christmas card in the paper with a self addressed envelope in case someone might want to tip him. Every year I put it aside with the best of intentions to do just that. Then I find it when I'm cleaning everything up and figure it's too late. Not this year. On Sunday I waited for him to arrive (Sunday paper is later) and I actually handed him the card with a decent tip - nothing extravagant, mind you, but I've missed a lot of years. He certainly didn't have to buy me any candy.

We had a nice chat when I gave him the card,just as we used to every morning when he delivered the paper at the same time as Maggie's bus arrived. He actually asked me if we still had a dog. I laughed and said, yes, but he sleeps through your deliveries now. Brisco used to go nuts whenever that guy was anywhere near the house, but he's old and lazy and gave up on barking at Peter. (When he gives up on the mail carriers, UPS and the oxygen guy I'll know he's over the hill).

He's a nice guy and I miss our morning hello now that he's delivering earlier. However, if he's willing to drop a box of See's now and then, I could get over missing the hellos.

In the event my suspeicions are incorrect, and the came from someone else who happens to be reading this, thank you. Whoever did it completely made my day.

Nonetheless, I meant everything I said about Peter, but if it wasn't him I 'm going to suggest he get that Sunday paper here earlier.

Monday, December 28, 2009

Watch this!

Buying gifts for Maggie is both incredibly difficult and perfectly simple. It is difficult because there are so many things she cannot do and I am reminded of that whenever Christmas or her birthday looms. It used to depress me but it doesn’t so much anymore. It is just part of the whole deal.

On the other hand buying gifts for Maggie is simple because Maggie loves EVERYTHING. Opening gifts is hugely entertaining, from ripping the paper and reaching in the box to pulling out whatever it is. And laughing uproariously

Her favorite gift this year did not come from me. Her nurse Etoy bought her a watch. That is a curious present for a girl who cannot tell time, cannot see the watch and cannot speak.

Maggie LOVES it.

It opens like a bracelet and slides right over her very slim wrists. If you ask her what time it is she just lifts up her arm and laughs.

Tim was cracking up at her antics with the watch the other day and was delaying leaving for work. He only has a week or so left there and it is not cool to be late. The irony of wasting time while playing with a watch was not lost on me.

I taught Maggie how to tap her watch impatiently to show someone he or she is late. She thinks that is a riot. The tapping is clumsy because of Maggie’s cerebral palsy, but it is purposeful. It is pretty clear what she is doing.

The only problem is that Maggie cannot get the requisite disapproving look on her
face to go with the tap tap tap. It is hard to look disapproving when you are filled with joy.

Wednesday, December 23, 2009

Pizza and Parents

The event at the UCSF Children’s hospital was a great success. The Family Advisory Council (FAC) hosted a pizza dinner for the parents of kids who are in the hospital. As is often the case, it started out slowly, with everyone keeping to themselves, but as the time passed, the parents started visiting with one another. As you may imagine, it was easy for everyone to find common ground.

Because all of the members of the FAC are also parents of kids who are or were frequent patients at UCSF, we too could relate. Sometimes we relate generally, as parents of sick kids, and other times it’s specific. For instance, one mom rather shyly asked what my daughter’s condition was and I told her. She told me her otherwise healthy child had just been diagnosed with a specific disease. She was devastated. I said, "Oh, you need to meet Ms. X. right over there. Her daughter has the same thing. The two of them chatted the rest of the night. I know that woman felt better after talking to another mom dealing with the same disease. Spanish speaking parents could converse with Spanish speaking members of the FAC and get information they might otherwise not be able to get.

We had about twenty stockings full or goodies to raffle off. The goodies included hand knit scarves donated by the mom of one of our committee members and $5 Starbucks cards donated by Tim’s boss. The parents loved it. Many had returned to their children’s bedsides by the time the drawing happened. I had the happy job of delivering the goodies to the parents who didn’t know they won. Generally, I do not like to invade someone’s space in the hospital, but knowing they had filled out the raffle ticket and would welcome the intrusion, I was happy to have the job.

As the event wound down the members of the FAC munched on the fabulous desserts and chatted with one another. One mom had us laughing about getting her daughter airlifted out of Yosemite. Admittedly, this is not normally a funny situation, but this group lives this and is able to see the humor in these situations. At that point, her daughter was not in huge danger, but they were so remote that airlifting was the only safe thing to do. She spoke of feeling like a movie star as the helicopter landed in a field with tourists and her husband snapping pictures. She said when they asked her weight she knew she could not lie. It was a helicopter, and if she lied about her weight, they could all go down. She did not want to be responsible for that. Someone else suggested giving them to total weight of mom and child and averaging them. I said I would make my skinny husband go.

I hope a dreary holiday in the hospital was brightened even a little bit for those families.

I know mine was.

Tuesday, December 22, 2009

No Admission

It is the Holiday time. The hustle and bustle is swinging onto high gear. People are buying, wrapping, cooking, singing, decorating and gathering.

It is a terrible time for a kid to be in the hospital.

Tonight the Family Advisory Council at UCSF Children’s Hospital is hosting an evening for families who are stuck in the hospital at this time. It is nothing fancy, just pizza and the like, but it is also an opportunity to bring just a tiny bit of the holidays to those stuck the hospital with their child. The patients will get gifts galore, which is as it should be. However, the siblings and the parents are also having a lousy holiday and perhaps this will brighten it just a little bit.

As I spoke about this with the boys last night, Eddie remembered the year Maggie was in the hospital at Christmas. I corrected him. No, she was in at Thanksgiving one year, and all of our birthdays, but never at Christmas. He insisted, saying he distinctly remembers me saying Santa had not come yet because Maggie was sick. Then I remembered, it was her first Christmas, but she was never actually admitted.

Maggie’s first year was much more IN the hospital than out. She was “ok” at Christmas time and I was not going to mess with it. At Christmas Eve dinner, she started falling apart and I knew something was up. We got the kids back home and I took Maggie up to the ER at about 10PM on Christmas Eve. She was getting sicker by the minute. They diagnosed ear infections in both ears and because her breathing was so bad wanted to admit her.

When I heard ear infections, I almost jumped for joy. That was a normal kid problem. I could handle that problem at home. The breathing issue was just Maggie’s norm, but I was having a hard time convincing the doctor on duty of that. I thought there is NO WAY I am spending Christmas in the hospital unless I am convinced it is ABSOLUTELY necessary. I told the young doctor on duty that if she thought Maggie needed the ICU, I would agree, otherwise I was taking her home.

They called in the attending doctor to back up the young residents. She too thought admission was warranted and I pushed back again and again. Of course, all of this was taking hours. They were going to watch her for a while before they forced a decision one way or the other. I could not bear the thought of missing the boys on Christmas morning when I had already missed so much of the year. I thought of my husband at home wrapping all the Santa gifts by himself. I needed to talk to him.

This was in 1994, a time we like to call “the days before cell phones”. The doctor came back in to see if Maggie was improving any with the treatments and medication. She wasn’t – but she wasn’t getting worse either. I asked if there was any way I could call my husband. Relieved, the doctor led me to the doctors’ workroom to use the phone. You could see that she thought I was caving. It was as though she was saying, “Good, he’ll talk some sense into her.” However, that was not the reason for my call.

I told Steve what was happening and that I was trying to get out of there, but I had to get something straight about the gifts. I felt every doctor in the room staring as I said, “The YELLOW power ranger is for Tim and the GREEN power ranger is for Eddie. Put the pink one in Maggie’s stocking.

I think she gave up then. Suddenly the discussion changed to IF we send her home and she gets worse what will you do? I will come back, I promise. I would not insist on taking her home if I did not think I could handle it. She wrote a prescription and said give her some of this as soon as you get home. I said, can we fill it here? She said no, the pharmacy is closed. I said, “Well, it’s 3AM on Christmas morning. I’m willing to bet every other pharmacy is closed too.” She told me there is a 24-hour pharmacy in the marina district. (Still trying half heartedly to get me to admit Maggie) I just looked at her and said, "this child is so ill you think she should be in the hospital, but now you are telling me to take her across town to the 24-hour pharmacy?”Why not give her the first dose now and I can get my husband to fill it in the morning.

Done. I took her home and after a couple of hours of sleep spent Christmas morning with all three kids. The boys were oblivious to the events of the night before but Eddie, who was 6 then, asked me what time Santa came. I told him when I came home from the hospital with Maggie he hadn’t come yet.

From that whole adventure, that is all he remembers or really ever knew. That was a good Christmas

Saturday, December 19, 2009

The Silent Monks

For the season, I give you, The Silent Monks. It is hilarious and joyful

object width="425" height="344">

Friday, December 18, 2009

Joy to this world

I went to the Holiday party in Maggie's classroom today. It was great. You have not witenessed joy until you've watched karaoke in a special education classroom.

Inhibitions? non existent!

Lyrics? who needs 'em? Just sing!!!!!

Can't speak? No problem. You get the microphone for a while anyway and a rousing applause.

Everyone had a great time and left for the Holiday Break laughing and happy.

Maggie's favorite song is Beyonce's "All the Single Ladies." She goes wild when she hears it and today was no exception. I managed to catch her mid dance today. Her favorite line is "put your hands up" and Maggie does whatever Beyonce says.

wishing you this much joy for the weekend.

Thursday, December 17, 2009

Three Kings

Maggie and Steve spent last night grouting the new tile backsplash in the kitchen. Maggie was less than amused at this turn of events. Mom was out on the town.

I went to a Christmas Party last night at the St. Francis Yacht Club. It was a company party. I do not work for that company and never have. I went with my mother, but she never worked there either. No. We did not crash. We were invited. In fact, my mom was a special guest and I was her date. It was a party for a company that still bears by father’s name.

The company is now known as MOC insurance. This was the 40th anniversary of MOC – but M & O were there before C joined. It started out as Maroevich, then Maroevich & O’Shea and when my dad joined, it became Maroevich, O’Shea and Coghlan. We are the “C” in MOC. My dad was self-employed for many years. As he neared retirement (and none of us was stepping up to the plate), he sold to/joined with his old friends Bud Maroevich and Kevin O’Shea. These were not just business associates but all went to the same high school and stayed in the general “hood.” They had known each other for years. My dad figured he could avoid being swallowed up by a huge brokerage and preserve his business best by joining with these guys. He was right. Sort of.

MOC is not a small business anymore. Bud’s son Van has taken this agency and made it a huge success. Even with the growth, though, they have indeed managed to preserve that small business feel. Van pointed out that the business was not just his dad, but also him mom. Bud and Gladys started this business, worked together in it for many years and eventually brought in O’Shea and Coghlan. Van graciously pointed out that without Mrs. O’Shea and my mom the business could not have succeeded. He is right, of course. These guys could do what they did because they had supportive wives at home, or in Bud’s case, a supportive wife in the office.

Eventually, Van took over and brought this business into the 21st century. Van started working in his dad’s office as a young man. I like to think he’s still young…..but I know he is older than I am. I know that because I have known this family all my life. His (much) younger sister Lori has been a great friend of mine since I can remember. She and her sister Tery have worked at the company all along, giving that “family business feel” some credibility. They make an effort to include my mom and Mrs. O’Shea because they know the family business includes these families too. It is sweet and genuine and likely a reason for the continued success. The next generation is joining in now giving promise to the next 40 years. From what I saw last night, it is a large group of people who work hard and actually like one another. Most of their employees never met any of the three founders but they are carrying on in the same spirit.

MOC does its part in the community too. They support children, in fact, they have supported Advokids, one of the non-profits I work with, and they even buy pants for a local high school baseball team. That is cool. I hate it when baseball players don’t wear pants.

To celebrate the 40th anniversary there was a giant cake adorned with a picture of all three founders, M, O & C. Apparently that picture is in the conference room in the office. It is also in a small frame in my mom’s dining room. We call them the Three Kings or The Three Wise Men. They were wise, all three of them. All are gone now, but their legacy lives on. It makes me feel good, but it also makes me miss my dad. He would have loved being there last night with my mom and with Bud & Gladys and Kevin & Jean. Nonetheless, I’m sure all three kings and one queen were looking down on the night with pride.

Wednesday, December 16, 2009

Playing the Field

Yesterday I posted a photo of Maggie and Juan. They remain “close friends” but I have news. Ms. Maggie plays the field. She’s been flirting with Tyre.


Maggie’s class consists of six students - two girls, four boys. Excellent odds. No sense putting all your eggs in one basket. She’s only a freshman, after all.
Of the four boys, both Maggie and I have known three for several years. The other girl, Cuiping, and Juan are the only kids I did not know before this year. There just are not that many kids in wheelchairs and you tend to get to know the kids around your age. Juan is not in a wheelchair at all and he ran in different circles. I’m not sure, but I believe Cuiping recently moved to San Francisco so we didn’t know her either. But we know the rest of the boys. Maggie and Grimaldy have been in the same class since second grade. The other two boys are a bit older, but there has been overlap at several points. Robert less so than Tyre, but there is familiarity there.

Tyre is just a couple of years older and there has been a lot of overlap. Plus I know his mom Nadine. We used to do a parent presentation together all the time and we would run into them at the doctor and other places. Hence, Tyre and Maggie are pretty good friends.

Tyre’s abilities and disabilities are more like Maggie’s than anyone else in the class. He has medical issues as well as disabilities and he, too, is very good at using his communication device. Tyre cannot control his arms and hands sufficiently to access the communication device, therefore he uses a pointer on his forehead. It is not sticking out or anything, it’s just a dot that communicates with the device electronically. He’s a whiz at that thing. He also has a little bit of oral speech. (Showoff.)

One day Maggie found herself next to Tyre. Because he has trouble keeping his arms still from the constant movement, Tyre’s arms are restrained with Velcro straps. This is not a bad thing, believe me. It allows Tyre to concentrate on what's going on around him without the distraction of his constantly moving arms. Maggie, has zero problem with her arm movements, in fact, that’s her strength. Maggie also LOVES Velcro.

Nadine learned this from Tyre’s “news” on his talker when he got home from school. Apparently, Maggie kept reaching over to Tyre ripping and ripping at the Velcro. When she finally got his hand loose she held his hand all through the lesson.

Hearing that made Nadine laugh and she asked Tyre is he like that. He grinned from ear to ear – and you haven’t seen a grin until you’ve see this kid grin - and said aloud “yes.”

I’m sure Robert’s next on her hit parade. She has to get to him. I think he’s graduating.

Monday, December 14, 2009

It what's for dinner

Grandma Carmel came over for dinner on Saturday night. It was very casual. Things were in disarray from the work in the kitchen and the half decorated Christmas tree. We just pushed the mess aside for awhile and sat down to eat.

On Friday morning I told Maggie that Grandma was coming to dinner and asked if she wanted to help me cook. Of course, there was a resounding yes! to that question and her excited arm movement that foes along with it. I explained that the first thing we had to do was decide what to cook and made several suggestions. All suggestions met with rejection from Maggie.

Chicken? No!

Roast beef? no!


pasta? no!

Hmmmm. I started on other things pigs feet? No! [good – never had ‘em], chicken lips? No! (with a huge laugh.)

In mock exasperation I said,”Maggie, we have to eat something, what to do you suggest? That we all have Vivonex?” This brought uncontrollable laughter and yes! yes! yes! Vivonex is Maggie's’ food. It comes in 250ml cans and she is fed every two hours. According to the can Vivonex is ,“medical food for tube feeding or oral use” (she is strictly a tube feeding girl) and it is “formulated for maximum tolerance.”
YUMMY! This is exactly what I want to serve at a dinner for my mom.

I promised Maggie that I would put a can at every place and she was beside herself with laughter when I followed through.

Sometimes I have to stop and be amazed at the life Maggie leads and how I take it for granted. She doesn’t get to taste anything , doesn’t get the joy and camaraderie of dining out or dining at all. Her food has to be prescribed by a doctor and is delivered by a medical supply company every month. We had to go through many different manufactured foods before we found one that worked. Maggie’s intense allergy to milk products coupled with her delicate constitution severely limited her choices, even in the world of medically prescribed food. After various trials and errors, the GI nurse practitioner prescribed Vivonex. Turns out that maximum tolerance thing works!

I'm delighted too find a food that works, but that's not the amazing thing. More amazing is that Maggie doesn’t care about any of that. She is happy to be part of the action even if her seat is two feet away from the table.

If I knew it would make me as happy as Maggie, I would happily switch to her food. However, I'm not sure I have the same positive outlook that she does. Vivonex is manufactured by the Nestle corporation. I’m glad they make this stuff, but I think I’ll stick to Nestle’s crunch bars, if it’s all the same to you.

Sunday, December 13, 2009

Hey another Saturday night....

Another wild Saturday night at our house. This was taken about 10:30 PM. Note the pile of books at the foot of the chair. Maggie loves it when Steve reads to her. The books wear the two of them out. The omnipresent suction machine is also visible.

Thursday, December 10, 2009

Merry Christmas

Merry Christmas.

I said it and I meant it. I wish you a Merry Christmas. Even if you do not celebrate Christmas, I wish you a Merry Christmas. This does not mean I do not respect your holiday or tradition. Nor does it mean I am trying to shove my traditions and beliefs down your throat. It simply means Merry Christmas.

How did we get to the point that saying Merry Christmas is politically incorrect?

Yes. It is religious. I realize not everyone shares the same religious beliefs, and I am glad they don’t. The world would be so boring if that were the case. In Christianity, Christmas is the celebration of the birth of the Savior. It does not get bigger than that (until you get to Easter.) Christmas is a reminder that even one born in the most humble of beginnings can be most important person in history. It is a reminder that goodness and wonder are part of us. It is hope and innocence. It is joyful and happy.

Even in the secular world, Christmas represents innocence and the promise born in each of us. It is a time for giving and sharing and gathering. It is a time to believe in wonderful things. It is Santa Claus traveling the earth to deliver presents to all the good little boys and girls. It is gifts, and singing and over eating. It is hope and innocence. It is joyful and happy.

The religious Christmas and the secular Christmas are intertwined, but neither is pushing the other away. All celebrations are welcome. Many complain that the “true meaning” of Christmas is lost in the consumerism. However, I do not think that is true at all. I think there are many “true meanings” of Christmas and all of them are good. Certainly, the shopping can get out of control, but it is the one time of the year we feel the need to give gifts to family and friends. The process of that can be overwhelming, but more people than not take part in it. When all is said and done, many of us have made an effort to get in touch with old friends, and most of us spend time with the people we love – or wish we could.

Many do not celebrate Christmas at all, but they are involved in other types of celebrations. There are many other holidays this time of year, every religion, or group has a winter celebration of some sort. The stories are different, but the central theme is the same. All are joyful and happy. All are wonderful. If you celebrate Hanukkah, Kwanzaa, Ramadan, the Solstice or any other holiday, I wish you a Happy, Merry, meaningful celebration of that as well. Nevertheless, I still wish you a Merry Christmas, because that is how I celebrate.

If you do not celebrate any holiday, that is fine. I hope you have a lovely December. However, I secretly hope you are invited to the house of someone who celebrates one of these holidays, just so you have a little seasonal fun.

Everyone should get to enjoy whatever their holiday however they choose to do so, including not at all. Be true to your traditions or make some new ones. Enjoy the hustle and bustle of the season, whatever you call it. I call it Christmas. That is not a "my way or the highway" statement, it is just what this season is to me.

I hope you all have a very Merry Christmas. Why wouldn’t I wish that for you?

Wednesday, December 9, 2009

The Good, the true, and the Beautiful

A couple of weeks ago I flew to Southern California to attend the funeral of Leonard White. He was 89 years old and led an extraordinary life. My reason for attending was to pay my respects to him, his wife and three daughters who I have known for over 20 years. His daughter Clare is my sister-in-law, married to my husband’s brother. I went because it is the “right thing” to do. However, I heard something that day that stayed with me and, as is often the case, doing the “right thing” was more “right” for me than anyone else.

Leonard’s daughter Theresa spoke lovingly of her father and his insistence that his three daughters be independent women – teaching them to change the oil in their cars was one of the many ways he did that. She spoke also of his strong faith that framed his life. He did not just talk the talk, but he walked the walk and quietly helped many people throughout his life.

All of those things are lovely, of course. But there is something else. The philosophy he taught his daughters sticks with me. Theresa said her dad always taught them to look for “the good, the true and the beautiful” in any situation. It is easy, of course, to find the bad, false and ugly; finding the good the true and the beautiful might take a little more effort, but there is great benefit to be realized.

What an amazing thing to instill in your children. I cannot get that out of my head. I found myself researching the phrase to figure out its origin. There are books with that title, and someone referred to their high school teacher in the 50’s instilling that, but I could not determine where it came from. It does not matter. It is something we should all do.

Though I never heard that particular phrase before Leonard’s funeral, I like to think that has been my approach to Maggie. Not all the time, and not every day, but more often than not I see the good the true and the beautiful in a situation that screams the opposite. And the rewards have been amazing.

When I arrived home from my one-day trip to Southern California, I was exhausted. I left the house at 5:30 AM, flew down there, attended the funeral and reception and flew home arriving at about 9:00 PM. Tim, my 19-year-old son, picked me up at the airport that night and I told him about looking for “the good, the true and the beautiful.” I also told him how impressed I was with the concept and what a positive thing that was to instill in children. As I dozed in the car, I told him to pretend I said that to him every day while he was growing up. Retroactive parenting could work, right?

For the past three weeks, I have been thinking about this phrase and trying to come up with something clever to convey the message. It does not need anything clever. It is simple and perfect.

Just look for the good the true and the beautiful. You will find it.

Thanks, Leonard.

Tuesday, December 8, 2009

You are not going out like that, young lady

Brrr. It is a cold one here today. I know 38 is not cold for most of you, but for San Francisco that is cold. We just are not set up for it here. For example, the elevator we have for Maggie is outside open to the elements. We would not do that if we lived in an unfriendly climate. This morning I had to skate across the ice on the deck in order to get to the elevator. I wondered how the motor would work in the cold, but that was no problem.

The cold weather also presents some challenges for Maggie’s attire. Maggie is a snappy dresser but keeping her warm is not easy. Because of the trach, she cannot wear a turtleneck, or cover her neck in anyway, but we still need to keep her warm. She does have a cotton scarf (kerchief type) over the trach but it doesn’t really work for warmth. The only thing to do is dress her in layers. Her neck is cold, but she is not outside long.

Recently she received a jacket from her cousin Nina. It has a nice furry hood. That helps but even hoods are short lived. As soon as Maggie turns her head, she is staring at the lining of the jacket. The hood generally does not turn with her because it is held in place by the straps of the chair and the design of the headrest. Hats end up on the ground because Maggie loves to throw them. Gloves? Forget about that. With her cerebral palsy, it is difficult to get them on her fingers because she cannot move her body the way we can. Besides, her CP is just one part of the equation. She finds it hilarious to sit patiently while I work and work to get gloves or mittens on her and then immediately yank them off and throw them.

This morning I came downstairs and the night nurse had her all ready to go. She was in the jacket, all zipped up, and the nurse told me she put two shirts on Maggie. Ok, that is as good a job as we can do for her. I focused solely on warmth of her head and never considered anything else.

I took her down to the bus and the nurse went home. As I tied the scarf around her neck, I unzipped her jacket a bit. Yikes! She did have two shirts on as the nurse said. However, they were two shirts that should not have even been in the drawer at the same time, let alone on Maggie’s body at the same time. The black and gray sophisticated striped sweater/shirt combo was underneath a blue and turquoise summery shirt. She looked ridiculous. There was no time to change because the bus was coming.

The school nurse was there and I said, "I want you to know I did not dress her and please just take off the blue shirt when you get to school." However, there was more. As Maggie rode the lift up to the bus, I noticed her pants were light black cotton pants that hit her about mid-calf. Her bare legs had a nice blue tinge. I looked at the school nurse again and said. "I REALLY did not dress her this morning."

Poor Maggie is off to her inner city high school with freezing cold legs and clashing shirts. The night nurse is of a different culture and perhaps in that culture, this outfit is ok, but not in mine. I felt like a bad mother.

I can fix this. Tonight I think I will lay out the clothes I want Maggie to wear in the morning and I will get up a bit earlier in the morning to do inspection. Of course Maggie will probably start a new trend and I will embarrass her by putting her in matching clothes that actually keep her warm.

Sunday, December 6, 2009

It's Christmas Time in the City

Had to hit Union Square yesterday to take part in the Christmas madness. Busy sidewalks full of holiday cheer! Giant tree, ice skaters, Santa Claus, hordes of people, and even the grinch. Great Day

Wednesday, December 2, 2009

Test drives

Last weekend Maggie, Steve and I went appliance shopping. We were having new granite countertops installed on Monday and we were anticipating the need to replace the dishwasher, stove and fridge. The assumption was that they would look too shabby with the new countertops. We went to a large showroom that had a variety of all three appliances. It was a self-contained appliance store, not a Lowe’s or a Home Depot, and it had a parking lot with easy wheelchair access. Perfect.

Maggie thought that place was hilarious. There were so many things to pull on and touch. Keep in mind that Maggie does a lot of “cooking’ and she gets a say on how the new appliances handle. Dishwashers are boring because there is just one handle. Stoves are not important because her mean mother does not let her near that. (Burn much?) But the refrigerators? Now that was good test driving material. Steve positioned her so that she could try out each door. There were at least 50 refrigerators there and she test-drove probably 30.

Steve was playing used car sales person to her buyer.

“So, ma’am, you like the feel of this.” (Signs yes)

“That’s one of our best sellers.” (Looks at him quizzically)

“What will it take for you to take this home with you today?” (Laughs uproariously)

Though we were just looking, we did garner some important information. Never would have thought this, but we now know that we cannot consider getting a water dispenser, and especially not one with a sensor that cues it to run. Maggie would have water running everywhere. The sensor would be particularly entertaining. Every time she stuck her hand even in the vicinity, she would get water.

We also learned that a full door fridge would not do. Right now, we have the fridge on top and freezer on the bottom. A full side by side will be entertaining for her to open but there will be numerous dents in the door as it repeatedly hits the wheelchair. (Oh, by the way, you might want to stay away from the floor models in that particular showroom). That discovery plays perfectly into my plan, however. I want one of those two-door fridges with a pull out drawer freezer on the bottom. No dents, no water dispenser. No problem. Right on.

We did not buy anything last week and likely will not do so for a while. All three appliances are old, but all are functional. We ultimately decided to wait until they break. We are not good consumers – we actually use things for their entire useful life.

Bonus – When the granite was installed, the appliances looked fine – in fact better than ever.

Here are a couple of "before and after" or not quite after - there's no backsplash and no faucet. Oh, and the counters are clean which weill not last more than a day. Note the turkey in the before picture #1 - This was Thanksgiving morning. Counters a bit more cluttered than usual.

Tuesday, December 1, 2009


This morning I participated in another parent panel. This is a fairly regular thing for me, being on a panel with other parents of kids with “special health care needs.” I put that in quotes, because it is such a general term. The kids are as varied as can be; they include boys and girls from 0 – 18 years old and the special needs can be anything from disability to cancer and everything in between. Maggie has so many different dramatic needs and I have such a big mouth, that I am asked to make presentations all the time. I like it. I always learn something new about someone's situation, or even about my own attitudes.

The audiences also vary somewhat. Lately it has been mostly health care workers but I have also participated in presentations to many educators and students. Each of those groups encompasses many different types of people as well. Health care workers include doctors, nurses, social workers, administrators and therapists. Today it was nurses and social workers with a couple of doctors and administrators as well. The presentation is basically what life is like on the other end of the medical world, that is, what it’s like to be the patient, or the parent of the patient.

It is a good opportunity to dispel some myths about our family life. Maggie is a ton of work, but that does not define her. Our family is hamstrung by the level of care she requires, but that does not mean we do not have fun. The boys did not have a ruined childhood because of having Maggie as a sister. Yes, it is different, but, to use an overused phrase, “it just is what it is.” It is our reality and we deal with it, just as the other parents deal with the challenges their children present. Sometimes the toughest challenges come in the best packages.

Today's panel was held at George Mark Children's house. The George Mark house is the only freestanding children's hospice in the US, but I understand one is about to open in the Phoenix area. It is an amazing place that provides end of life care to the dying children and also provides out of home respite for weary families like mine. A child can stay at George Mark for up to two weeks in respite care and I presume as long as necessary for hospice care. Families can stay as well if they want. If you are interested in this, I encourage you to check out their website. ( They take families from all over the United States.

This was my first visit and the place is incredible. It feels like a sprawling home but has all the equipment necessary to care for Maggie or almost any other child. I looked into George Mark a couple of years ago. It took all my courage to make the call and the person who spoke with me gave me inaccurate and very hurtful information, indicating Maggie could not stay there. Any hope I had for a break from this insanity was dashed by her misinformation. I never called back. After seeing it today, I believe Maggie could stay there if Steve and I ever needed to leave town for a week. It would be difficult for me, and likely very difficult for Maggie, but it has entered the realm of possibility. Perhaps we could get a break….

Like every other non-profit in America, George Mark Children’s house is having difficulty raising money. It would be a crime if they had to discontinue services.