Arrgh!

Ahoy Mateys! Happy Halloween. Maggie the Maruader is decked out and ready for the day. Tough to see becasue it's so dark when she leaves, but the Pirate ship is complete with cannon (on her tray), and a treasure chest (full of Halloween candy). The eye patch is clearly for purposes of photos only. You can see it's already going up her forehead. She would not leave it on for more than a minute. Her favorite, the bangely bracelets. She was shaking her arm to hear and feel them jingle.

Have a great Halloween everyone!

Can't Get There From Here

My freedom is directly linked to the length of Maggie's school day. I have to have all my errands and fun done by 3:00 PM every day. Once she gets home I have to be here. Yes, we have a nurse here but Maggie is a two person job these days. Once she gets home and we get her out of her chair and settled, I can get out for about an hour or so, but I have to be back in time for the next transition to the chair or next procedure. It's a drag, but generally it works.

Once in a while I try something very ambitious and push the envelope a bit. I made plans to go to Sacramento today, which is almost two hours from here. I can take care of things there and be back here by 3(ish). Ambitious, but do-able. Of course that means everything has to go right.

Getting in and out of San Francisco means you have to cross a Bridge. And the fastest way to get to Sacramento is across the Bay Bridge. Because of a stupid accident on Tuesday, the Bridge is closed. That means the 100,000 + cars that use it every day have to find some other way to get into and out of the city.

When I say the accident was stupid, I mean just that. A repair done over Labor Day weekend failed and a 5000 lb chunk of steel fell from the top of the bridge. Horrible, but amazingly only one person was just slightly hurt. The reason it fell? The engineers forgot to account for the vibration of the bridge.

Really? An 8 mile stretch of roadway suspended high over the San Francisco Bay with howling winds and thousands of cars trucks and buses crossing it every day might vibrate? In earthquake county? Who knew? Sheesh! I can feel that thing vibrating when I'm sitting in my car. And I was and English major.

I almost cancelled my trip because the excess time makes this ambitious trip impossible to complete. We have to go north across the Golden Gate to get East to Sacramento. So does everyone else, and it will be S L O W going. But I need to get up there. Steve can't come home early because he has some hearing. I called around and made arrangements to have someone here, but I'm not 100% confident that will happen. I told the nurse even if all that falls through and I''m an hour late, Maggie will be fine just sitting in her chair.

Wish me luck!

Parenting for $10, Alex

This morning I sat on a panel with another parent describing what it is like to care for our children with “chronic life threatening conditions.”

I know. You are sorry you missed it.

The parent panel was the first installment of a long day of classes/seminars/whatever for the health care professionals enrolled in the continuing education program. I have done this many many times in the past and greatly appreciate the interest that the nurses, doctors, respiratory therapists and other professionals have in Maggie’s story, and in the story of other families . It never ceases to surprise me that during the course of the panel discussion, something or another will make me emotional.

People inevitably ask questions about how the news of Maggie’s medical problems and other issues were communicated to us. They want to know because that is one of the most difficult parts of their job and they want to know what goes right and what goes wrong for families. I appreciate that very much, but as soon as I start talking about it I am right back in the room when I first learned of (some of) Maggie’s problems, and the anguish we felt. I can feel tears welling up in the back of my eyes.

It happens every time and it surprises me every time.

My response to this concern about communicating – there is simply no good way to give someone bad news. There are a hundred bad ways, but I cannot think of a good way. I was appreciative at the time that the doctors came in with information and some idea of what was wrong so I could focus on that; but it was still not a positive thing for me. It would have been a lot more negative if they were cavalier or flip about things, but no one was.

We were asked to recount a time when communication with and between medical providers really worked in a positive way. Even though I had days to prepare this, I could not come up with an example. I told them honestly, 95% of the time the communication works fine, partly because I don’t let up until I get answers. For purposes of remembering, however, only the other 5%, the bad ones, come to mind. You remember and recount the bad ones, not the good ones. We take the good ones from granted. I hope they realize that 95% is still an A.

It is good for me to do these panels, even though they can be emotional. I can focus on how far we have come, the things we have learned and the person Maggie is. Sometimes all of that is lost in the day-to-day care and management of all of this.

Caring for a child with chronic life threatening conditions is a ton of work, physically and emotionally. However, being Maggie’s mom is fun. Participating in these panels allows me to transform her from the medical definition of her status to the person she is. She's a lot more intersting as a kid outisde of her numerous diagnoses and issues.

Close Call

It is Halloween week. Because Maggie is in a new school and because Halloween is on a Saturday, I figured I better check with the teacher about how things work. I specifically wanted to know whether the high school would allow costumes on Friday.
I was very surprised to get an email saying they do not celebrate Halloween in her classroom because one of the kids has a phobia about Jack-O-Lanterns and pumpkins. I was crestfallen. This is Maggie day to shine and she loves it. Obviously, she does not go trick or treating. She cannot to the steps and does not eat candy. Hence, school is really her time to shine. Now she cannot.

It did not seem right to me that one student’s needs seemed to be above the needs of everyone else. I emailed her back. Initially it sounded like a snippy email, but Steve told me to rearrange the phrases and it sounded much nicer. I told her Maggie has elaborate costumes and very much looks forward to it, and while we could be sensitive to the child’s fears, I didn’t understand why the entire holiday needed to be cancelled and asked if Maggie’s interest could also be taken into consideration. I attached a couple of photos of her costumes from years past. Everyone can have fun without freaking out the one kid with the phobia. We never do jack-o-lanterns or pumpkins in the costume. Those are for amateurs.

She agreed! We are back on. Now to finish the work by Friday.

Gepetto has a lot to do.

Friends

There was a commercial many years ago that keeps popping into my head. I don’t remember what they were selling, but I remember the jingle: “good friends are forever, good friends are for keeps.” That is about a true a statement as has ever been written.

When the chips are down, hopefully you have SOMEONE in your life who will stand by you. I have many such people who have proven themselves over and over, through all the trials and tribulations we have been through with Maggie. They brought dinner, or watched the boys, or walked the dog or did whatever was necessary so we could focus on the crises du jour for Maggie. You know who you are (and you BETTER be reading this!) I thank you all.

I try to imagine what life would be like without that support and it is impossible for me. I am lucky. I know its there. Others are not as lucky. Either they don’t have support at all, or they have it and don’t know or believe that it’s there. Either way they feel alone in both their brightest and darkest times.

We have a friend in the darkest of dark times now. We wish him well and hope against hope that he knows and believes we and all his other supporters are still out here. Because of the circumstances, we can’t do anything but love him. But we do.

Coup d'etat

Maggie’s teacher emailed me asking for ideas for lessons to engage Maggie a bit more. She is concerned that Maggie is bored in class. I appreciate that and gave her a list of things Maggie likes to do and things she did in middle school. I copied her middle school teacher too so he could weigh in.

Of course, I’m not sure what happens during the school day, but I know that Maggie LOVES going to school more than any kid I’ve ever seen. It is her social outlet and the academics are waaaay down on her list of things to do. Rather than bored I think Maggie may be a bit intimidated by the whole transition to high school. She is still getting used to all the changes, the new building, the new size, the new teacher, the new classmates etc etc etc.

I don’t remember any problem transitioning to middle school. But Maggie’s first year of middle school was a bad health year for her, and any issues with transition would have been subordinated to the health concerns. After that first year, she was the only member of her class with a communication device and she was GOOD at it. That made her the queen bee, and she relished playing that role.

In her new class, all the kids have communications devices and they are all good at it. She has been dethroned; the Queen Bee of the 8th grade is now a drone as a Freshman.
Though wrapped in different paper, this is a very typical problem. For a teenager who can’t walk, talk, sit or stand, and who breathes eats and pees through a tube, that’s fine.

Call me crazy, but I love the typical problems.

One Ringy Dingy

It seems almost quaint to have two land phone lines now, since 90% of calls are by cell phone, but we are very quaint folk here. I have considered dropping the fax/business line and putting it all on one. I have not stopped it yet, though, because it is part of our emergency night system for Maggie. There is an extension of the fax line in her room. Our room is upstairs in the front of the house and Maggie’s is downstairs in the back of the house. I cannot hear if there is a problem. The nurse can call the house phone if she or Maggie needs help. The house line rings right next to my husband’s head.

This system works pretty well. The weak link in the chain is my husband. If it rings in the middle of the night, he simply cannot wake up all the way. He sits up and stars at the ringing phone in wonder. Meanwhile I am out of bed and halfway down the stairs to find out the problem. There are times it has been life threatening stuff s and other times that the nurse does not have any more diapers.

Last night the phone rang around 1:00AM. Steve stared curiously and I said loudly, “It’s the phone – push the button.” He handed it to me in a stupor. I was already out of bed adrenaline rushing. Maggie had some trouble keeping her oxygen levels up before I went to bed, so I assumed the worst.

However, it was not the nurse, it was my sister Kate calling from Oakland. The tone in her voice made the adrenaline rush start again. Kate told me she had just received a call from the burglar alarm company for my mom’s house. The alarm was going off signifying someone or something was fiddling with the kitchen window. The protocol is to call my mom and if she does not respond to call the police and Kate, as she is the emergency contact. My mom was not answering the call and the police were enroute to her house. .

Ok. My clothes were on and Tim and I were on our way over there within 5 minutes. My mom lives about 15 minutes from here and at least 30 minutes from Kate, so it made more sense for me to go. Kate told the alarm company to expect us and they tell the cops. That is good. The last thing you need is to surprise two cops investigating a possible break in.

Before we were half way there, Kate called back. My mother finally woke up and called the alarm company. The downpour of yesterday afternoon and her leaking kitchen window caused the alarms to short. I kept going anyway. When we arrived, two cops were just leaving. We went in and checked on my mom who looked sheepish. She said the guy was coming to fix the leaky window this week. Didn’t bother me, though. I would much rather respond to a false alarm than the real thing. It is also good to know that the system works like it is supposed to.

When I returned, my husband was sleeping soundly. One thing I learned last night, it is time to change the phone to my side of the bed.

Home again

We went to the Collegiate National Mountain Bike Races this weekend. It took place at the Northstar resort in Truckee. My son Eddie and his teammates (above) from the University of Nevada were in charge of the event, which was a huge success. This is Eddie with his game face on between races.

There were spectacular crashes (not my son), exhilarating races, sunshine and blue skies.

That, however, is not the biggest news.

Maggie survived a weekend without us!

It CAN be done. It is a ton of work to set up and an expensive undertaking, but it CAN be done.

It turned out to be a very good thing that she did not come with us, though. We stayed in a condo that was PERFECT for the race venue but terrible for her wheelchair. There were steps leading to down to the place and a ton of steps inside. In fact, because there was a doorway leading to a steep flight of stairs, I doubt we could have even fit the chair inside the house.

And the races? Feggedaboutit! It was a mountain bike race; hence, it takes place on the side of a mountain. There was absolutely no way the wheelchair would have worked. We took to gondola up to mid mountain and then hiked up about 200 yards pr so to the two racecourses. We were perched on the side of a hill for hours.

If we went with plan A – wherein Maggie accompanied us – she and I would have been stuck in the condo without the wheelchair the entire weekend. Instead, she hung out here, sat in her chair, used her computer etc and I have a sunburned face and sore legs from hiking around.

When we got home, Maggie was happy to see us. Tim held down the fort, walked the dog, checked in on Maggie and made sure all the nurses showed up.

I am saving up for our next trip. Hopefully it won't be another 15 years.

A Halloween Retrospective

Halloween is approaching. It’s time to consider a costume for Maggie. It’s getting tough to keep coming up with things because my husband has done such amazing things in the past. We have to be creative or we will disappoint folks.

When Maggie was little we did the obligatory costume, but there was no thought or life to it. I dressed her up because that is what other kids did. Maggie could not go trick or treating because she cannot eat the candy – snicker bars are NOT the same when delivered through a feeding tube – and, in any event, she cannot do the stairs. We went through the motions, but it felt hollow.

In 2004 Maggie was ten years old. In late October of that year she was being particularly difficult. She was fighting me on everything. Getting in and out of the wheelchair was a fight, changing diapers was a fight, etc etc. I know it was the last week in October because I remember the sequence of events. Her bad behavior - and my reaction to it – changed Halloween for her and for us. Maggie has had the coolest costume ever since.

As I fought to get Maggie into her chair without dropping her I said, “Jeez, Mag, you are Hell on wheels this week.” Cue LIGHTNING BOLT . Hey! you can be Hell on Wheels for Halloween. I dressed her all in red, spent about $3 for a pair of horns and a plastic cape, dressed Maggie all in red and Steve made cardboard flames to cover her wheels
.
Suddenly Halloween was fun.

This was followed by a leprechaun in 2005, complete with the pot of gold behind her head. The “gold” was candy and the kids at school loved this one.

And the viking girl in 2006. Note, braids were attached to a scary helmet. This may be my favorite. It is so hard to choose.

Because the race car driver in 2007 was also very cool.. This is the first year Maggie had the

trach. We were collecting scarves to cover the trach for aesthetic and hygienic reasons. The costume was inspired by a gift from my brother Pat and his family. They went to Italy and brought her a Ferrari Scarf. That was all we needed. Maggie’s school nurse at the time, Nurse Sally knew what Maggie’s outfit would be and to our surprise, she came dressed as a mechanic that day. (can't find that picture)

Last year, 2008, may have taken the cake. Or at least prepared the cake. She was a chef. Complete with her own oven.




So, what’s on tap for this year????? Well, we are working on something.

No. That’s a lie. I’m not doing anything. I gave Steve an idea and he is engineering something in Gepetto’s workshop. Stay tuned for a couple of weeks. We will have the big reveal before you know it !

For now I’m heading off to watch my son compete in the mountain bike collegiate Nationals at Northstar. Check back in Monday.

Staying Informed

There is an election here on November 3. With all due apologies to the city attorney , treasurer and those who do or do not want lighted billboards on Market Street, there is nothing too exciting on the ballot.

Though this city preaches about how “green” it is, we received four lengthy election guides. Both sons registered in Nevada before last year’s Presidential election, but it will take five years before these things stop coming here. The election guides are about the size of a magazine and contain information on each item on the ballot and “for and against” arguments for all the propositions.

Like most good informed Americans, I get all the election information I need from scary ads on television. Generally, the night before the election I skim the guide to make sure my preconceived notions are correct and go into my booth as an “informed” voter.

Not my husband; he reads every word. If I am undecided (or perhaps uninformed) about something I can ask him and hear everything I never wanted to know about the issue.

Yesterday he came home early to find the election books on the table. He sat down and read one, which is no great surprise. But this time he read it out loud to Maggie and asked her opinion on each measure and each arguement for and against. Maggie was having the time of her life.

Local politics in San Francisco are….colorful to say the least. There are personalities that evoke very strong reactions. If you see some of these names in the arguments for or against a certain measure, it may sway your voting. Steve was adding color commentary on each of the individuals who offered an argument.
Steve notices an argument submitted by a friend of ours and said, Hey Maggie, our friend Mr. Blankety blank wrote one, we like him should we vote for this one? [Maggie gives her sign] YES! All right, yes it is.” On another measure it was “Maggie, Mr. so and so says this will help San Francisco, but we think Mr. So and SO is a horse’s a__, so we probably won’t vote for this. Do you think he’s a horse’ a__? [waits for maggie’s answer] Yes? of, then do you think we should vote for it. No?[waits as she slams her hand down for “No”] Allright! no it is.”

I was cracking up listening to the two of them. I chided him about his language and Steve said, “Maggie, do you think Mom should keep her big trap shut? Yes? ok, yes it is.! Mom, keep your big trap shut.” She went into fits of laughter. The two of them were having the greatest time. I couldn’t help but laugh

Imagine how entertaining it will be next year when there’s the mayor and governor’s races to add to the mix.

Note: Maggie really is laughing in that picture.

Going for it

This weekend is the collegiate National Mountain Bike championships. (http://www.usacycling.org/news/user/story.php?id=4491) This year it is hosted by the University of Nevada Cycling team and my son Eddie (pictured above) is the president of that team. He has been working on this for months. Hosting the Nationals means finding a venue and submitting a bid to USA Cycling for consideration. There are nothing but mountains surrounding Reno, so there were several venues to consider. The races will take place at Northstar at Tahoe, best known as a ski resort. Eddie and the rest of the Nevada Cycling team has been working with both Northstar and USACycling to make this event work. It has been an education for him, that's for sure.

Northstar uses the ski lifts and trails for bikers in the summer months. The lifts close the first week of October, because the weather is so unpredictable after that. Thia is a win win for Northstar. They get to host the event without disrupting any business. But Snow or pouring rain (like it is right now) could kill the event. This storm is supposed to blow right through and the forecast is for clear skies. The event should go on as planned, which is great. This has been a ton of work for Eddie and he would be crushed if it didn’t happen.

Northstar at Tahoe is about 3.5 hours from here. Originally we planned to take Tim and Maggie up there to support Eddie and his team. I was worried about taking Maggie because of the altitude.(6500 ft) Also, I’m not sure how we would be able to watch a downhill race on the side of a mountain with a wheelchair. Undoubtedly I would spend the entire weekend in the condo. Sigh.

Tim then announced he could not go. He had to take last weekend off work because of his wisdom teeth extraction and cannot get another weekend off.

Hmmm. Tim will be here…..do we dare go without Maggie?

In the 15.5 years that Maggie has been on this earth, Steve and I have NEVER gone away together for two nights. NEVER. In fact, we have gone for one night only two or three times in all those years. There is so much to organize and arrange, it hardly seems worth it.

This time taking Maggie with us might be more work than leaving her home. I called to get some portable equipment for travel and was told the (giant) equipment I have IS portable. Unhh. We would have to bring the mister, the nebulizer, the suction, the oxygen, all the supplies for feeding and diapering, tubes to make all those machines work and all the medications. In addition I would have to be the nurse for 48 hours straight, and there is still the high altitude and logistical problems to worry about. Hmmmm.

So we’re doing it! We’re leaving Maggie here. The way this all sort of fell into place makes me pay attention. I have to give it a try. Besides, if Eddie can talke his life in his hands to speeed down a mountain, I can do this. I arranged for two additional nursing shifts that I will pay for out of pocket. Tim will be in and out and can keep Maggie from worrying.

Of course, I’m not sure who will keep me from worrying,

Stuck in the Rain

Land is scarce in this town; and from the beginning, it was built vertically, not horizontally. Our house is a typical San Francisco house, tall and skinny. It is 25 ft wide and two stories above the ground. There is approximately 1 inch between our house and that of the neighbors on either side. There are blocks and blocks of these row houses. Inside they are loaded with character, but outside, they look similar. In addition to the outer appearance, all have one other thing in common. They are terrible for anyone in a wheelchair.

The design of this house makes in unfeasible to have Maggie upstairs in the bedrooms. That means two flights of stairs from the ground to the bedrooms. Maggie’s room is on that first level. She sleeps in what was originally designed to be the breakfast room. We added a shower to the half bath and moved some doorways around and it looks like a bedroom. There is no closet, but in general, it is working for us. Even getting her to the first level was difficult. To combat this, we had an elevator installed about 6 years ago. It is nothing fancy. It is outside, open to the elements, and goes from the back yard to the deck off the first level of the house. The deck did not exist until we got the elevator but it makes a nice addition to the house.

Maggie cannot be in the elevator alone. It is a slow trip, like 90 seconds, and she often needs suctioning or something. Moreover, the emergency stop button is bright red and within easy reach for her. Maggie would be hugely entertained if she could make the thing stop, start the alarm and watch me panic all at the same time. Therefore, someone is always in there with her. Of course, her chair is large and just fits on the platform lift. Hence, the extra person has to wedge him or herself in for the ride. If you do not position it correctly at the beginning, you end up on tiptoes standing at a strange angle all the way down (or up).

99% of the time, this arrangement works fine. It is not perfect by any means, but we are making it work. We live in California, the land of no weather. It is foggy in San Francisco, but who cares. Today, however, the remnant of a typhoon is slamming into San Francisco. Going down the elevator today was quite an adventure. It was pouring and we had to get downstairs for the bus. (Her night nurse wanted me to keep her home, but it is just rain and they do have a roof on her school.)

She was decked out in rain boots and a jacket with a hood. I had on a pullover waterproof jacket with a hood. I positioned myself so I could lean over her to shield her as much as possible. I had to hold the elevator button at the same time, so I could not move from my position. Our faces were pretty close together and Maggie thought that was hilarious. She had me and she knew it. First, she put her hand in my mouth and tried to pull my teeth out with her extremely strong grasp, but I shook her off. That made her laugh. Then she pulled the strings on my jacket so my hood tightened around my face. We were both laughing them. I just kept my finger on the lever to keep us going down. At the bottom I was so wedged in it took another 30 seconds to untangle myself to get back behind the chair so we could get out. We were both soaked, but it was a fun ride and my positioning did keep the water out of her trach at least.

My jacket has been handing in the shower for 90 minutes since she left. Now I have to put it back on to go to my physical therapy appointment. Brrr. Oh well, at least I can take the stairs.

Parade of Golf courses

Yesterday was a wild day in San Francisco. The President’s up golf tournament was happening at Harding Park in the southwest side of the city. Roads are closed snarling traffic in that area. On the other side of town there was the parade formerly known as the Columbus Day Parade, but now changed to the more politically correct “Italian Heritage Parade.” The parade goes from Fisherman’s Wharf to North Beach a very congested and vibrant part of town. We watched some professional golf on TV, but really wanted to go to North Beach. There may not be professional golfers, but there is a miniature golf course in North Beach just one weekend a year.

It is particularly close to our hearts because Steve created it.

Before we could visit that golf course, we actually had to get down there. Parking is always a challenge in North Beach. On parade day -- feggedaboudit. So many streets are closed for the parade, you can forget about driving in that area. In fact, the busses are re-routed through the area, so even public transportation is tough. If you want to get there on parade day, you better be prepared to walk. So we did. We drove to Steve’s office downtown and walked a mile or so through the financial district and Chinatown to North Beach. Once you get to North Beach, every sidewalk is filled with tables from the dozens of nearby restaurants. You have to press through even as waiters carrying large trays of food cut you off. It is energizing and entertaining.

In past years, we have taken Maggie. Steve would drop us off as close as possible and meet up with us later. She did not have any fun though. The crowds and the noise are too much for her. Without the car, escape is difficult. Steve took Maggie to Golden Gate Park in the morning and when the nurse arrived, we went to North Beach without her. We had to hit the bazaar at the boys' elementary school, Sts. Peter and Paul (SSPP). Steve had to check on his creation/legacy.

In about 2002, Steve created a miniature golf course for the school to use at the bazaar. It is incredible. The golf holes are miniature versions of the Golden Gate Bridge, Coit Tower, Lombard Street as well as the leaning tower of Pisa, the Nina, the Pinta, the Santa Maria as well as the obligatory windmill. They haul it all out for the Bazaar and the kids love it. One little girl, dressed as an Italian princess, was lying flat on the ground looking through the pipe trying to figure out where the ball went. The course is definitely showing its age now after 7 years of use, but it warms his heart (and mine) to see kids enjoying it still. Couple that with a grilled Italian Sausage sandwich with peppers and onions (I take off the peppers, though) meeting up with old friends and NOT bringing home any goldfish and you have a perfect experience.

Walking back to the car through Chinatown was slow going. The Blue Angels were flying. I kept trying to get a picture --no dice -- those suckers are fast and all I had was my cell phone camera. It was cool to see these jets zooming over the rooftops of Chinatown. The streets are so tight in there that you cannot see them coming, you can only see them for the split second they are immediately over head. You can sure hear them coming, though, and everybody is poised and looking up. Though it is a bit disconcerting to see fighter jets over your city, I have to admit it is thrilling.

We were home after three or four hours. Maggie was calm and happy but we were exhausted. I had to make dinner but because of the food at the bazaar was in no hurry. Poor Tim finally made himself some Mac and Cheese because he was starving.

Today Maggie is off school. For San Francisco Unified School District, today is Indigenous People’s day. In North Beach, it is still Columbus Day.

For me, it’s Monday. Whatever you call it, have a great day.

Big Al

My husband often makes fun of me because I peruse the obituaries in the newspaper every day. He calls it the Irish Sporting Green (or sports page for those of you who didn’t grow up with the SF Chronicle – it’s actually green) It’s a habit I developed long ago. It is amazing how often I see a name I recognize, usually someone distant. If you are close to the person, you don’t need to read it in the paper because you already know.

Today was different. I read that someone died who remains very important to me, even though I have not seen or talked to him in a few years.

His name is Dr. Al deLorimier. I met him about 12 hours after Maggie was born. He was a pediatric surgeon, not just any pediatric surgeon, but one very well known all over the world. Maggie was born with so many problems and needed immediate surgery to survive. Our pediatrician told us Dr. DeLorimier was the best. He had to come over from UCSF (Maggie was born at a different hospital) and everyone was excited that he was coming. Several of the nurses in the NICU had worked with him over the years and everybody knew who he was.

We waited anxiously for this great guy to arrive. We put him on a pedestal based on all the wonderful things we heard. He was going to save our new baby girl. I asked a nurse when the surgery would start and she said, “ I’m not sure, no one has heard from Big Al yet. “ Steve and I looked at each other. This great surgeon – one of the best in the world -- was “Big Al.” I pictured a guy wearing greasy coveralls in a garage and Steve pictured Al Capone. Neither image was particularly comforting. The pedestal shook a little bit.

Then he walked in. Dr. deLorimier was tall and handsome and completely in charge, but didn’t have an ounce of arrogance. He was Big Al. He talked to us about what he had to do, drew pictures of what Maggie’s anatomy looked like and what it was supposed to look like. He calmed our fears and went to work. I asked how long the surgery would be and he said simply “I don’t look at the clock.” It was the perfect answer and, to this day, I think of that every time Maggie is in the hospital. I can ignore the time because it just doesn’t matter.

Dr. deLorimier operated on Maggie for about 5 hours that day and at least 12 additional times after that. He treated Maggie with incredible respect; he treated her as a person, not as a baby and certainly not as a baby with problems. He also treated us with respect and made himself available to assist us in more ways than I could ever recount. He intervened with insurance companies, and other doctors. His staff, including his wife, was accommodating and helpful. I had his home phone number and even after he retired, I called him for advice once or twice. This just doesn’t happen. He knew Maggie’s unusual anatomy better than anyone, because he had seen every part of it; and when doctors wouldn’t listen to me he talked to them about why Maggie had to be treated differently.

He also adored Maggie. As a mom, you just have to love a guy who loves your baby. He probably made that connection with a lot of patients and their families, but we always felt special. Of course, most people do not get to know their surgeon quite as well as we did. Most kids do not need repeated surgeries like Maggie did.

There is no way to describe what this man meant to us. Dr. DeLorimier saved my daughter’s life and he did it over and over again. He and her pediatrician, Eileen Aicardi, are the reasons Maggie survived those first few years. They did their jobs better than anyone else could have and taught me how to do mine. Dr. DeLorimier retired when Maggie was about two and a half but he operated on her at least 13 times in those 30 months. He owned a winery and went from saving the lives of children to improving the lives of adults. We visited him at his winery a couple of times and still exchanged Christmas cards but I have not seen on talked to him in several years now. He was never far from my heart, though.

I wish his family, and especially his wife Sandy, well in this difficult time. He was a great man. He was a great surgeon. In this house (and probably hundreds of others) he has a very special place, and always will.

Apparently my guest book disappeared.

While I investigate that and figure out how to replace it, please feel free to comment.

Queries from Strangers Part IV

I’ve written a few entries about stupid things people say to me regarding Maggie and her disabilities. (check the label/tag “stupidity” to see the previous three posts about this.) This is probably the last one of these for a while. As noted, sometimes I have snappy comebacks and sometimes I don’t. That depends on several factors, including my mood, my relationship with the person speaking, how insulting they are etc.


The comments happen frequently but not constantly. They are tiresome, unless they come from children. I always answers questions or even invite comments from kids because the only way kids learn is by asking. The same is true of adults, of course, but adults get points off for boorish behavior. Often the answer should be, “it’s none of your business. “ but the last thing Maggie needs in this world is a mother who alienates people. She is isolated enough.


There were a couple of instances that demanded a stronger reaction.


Maggie was a funny looking baby, I admit that. Her head was huge, she wore these (cute) pink plastic glasses and was always sort of draped over my arms. People often stared and then caught themselves and stopped right away. Sometimes they didn’t stop and it made everyone uncomfortable.


In one instance a woman’s incessant staring was frightening the boys, who were about 5 and 7 years old at the time. We were in Toys R Us. I tried to ignore her and told the boys to do the same but she was cranking her head and staring at Maggie mouth agape. Her husband was trying to get her to stop as he could see that the boys were worried. I will never know what her story was and to this day I wonder if she lost a child or something.


But you know what? No matter what your story, you cannot scare my kids. I finally walked up to her and said. “We are done in this aisle, but if you want to continue to stare we will be over in action figures.”


Needless to say that stopped her cold. The boys were relieved and learned that sometimes you have to school people a little bit. They still stare back at people and make them realize what they are doing. That day they managed to parlay the whole scene into (another) Ninja Turtle or whatever the action figure du jour was.


The other was, without a doubt, the most insulting thing anyone ever said to me. But it was so ludicrous that it was almost funny. We were in the dog park and I noticed my benchmate, an older Russian woman, staring at Maggie. I ignored her and simply enjoyed being out in the air watching the dog frolic. After several minutes the woman, who spoke with a very strong Russian accent said “Vats wrong wid her?” I gave my stock answer,” nothing’s ‘wrong.’ This is how she was born.” I studiously ignored her continued stares, but I knew something else was coming. She tapped my leg and waited until I looked at her. She then pointed a bony finger in my face and said”


“No more bebies, pleeece”


Looking back now I get that she was trying to give me a lesson in genetics, but didn’t have the command of the language. That would still be terribly offensive, but the way it came out was incredible. A complete stranger in the dog park was wagging her finger in my face and telling me not to breed again. I was dumbstruck for a moment, which is a rare occurrence for me. The absurdity of the whole thing hit me and the only thing to do was respond in an equally absurd way. I just looked at her and said. “You know I was going to but since you don’t think I should, I will tell my husband -- no more kids.”


My sarcasm was completely lost on this woman. She just looked back at the dogs and said “Ya, dat iz goot”

Now it was my turn to stare.

Monday Monday

Monday morning. Those words tend to elicit a groan, but not for me and definitely not today. We had a very busy weekend and I welcome the quiet and routine of the workweek. My husband?s 50th birthday was this weekend. We had a huge party on Friday night and a few relatives and friends stayed all weekend. The house is a mess, there is no food in the fridge and there is a mountain of laundry. I have work projects that I put off until after the weekend that are nagging to be completed. Right this minute, though, Maggie is off to school, Tim has gone to class and Steve is backpacking. The house is quiet and I am enjoying it.
In addition to all the revelry, Maggie and I went to a playground to meet up with Tammy and her kids. Tammy has been telling me about this great playground at St. Mary?s Park* that is accessible for wheelchair users and other kids with special needs. I was skeptical because I have been to these parks before. The efforts at access are commendable, but barriers still exist. Ground cover that isn?t wheelchair friendly, access to the top of the slide but not the bottom, things like that. Playgrounds exist for children to run and climb and making them accessible for those who cannot run and climb presents unique challenges.
St. Mary?s park was the best I have seen. It is build on the side of a hill and the main structure forms a bridge all the way across the playground. The bridge, wide enough for a wheelchair, branches off into several activities and a wheelchair user can take advantage of many of them. At 15, Maggie is too cool for that stuff, but I could see how much fun she had just crossing the bridge.
The design of the playground was good, but it was not the best part. The access the park creates is more than just architectural. It provided access to typical childhood experiences. Watching the kids, both typical and special needs, play with one another was heartwarming. There were several families enjoying the park, including a group of parents with their special needs kids. That made my heart soar. Their kids, all little and playground age, were enjoying the playground and the socialization with other kids. Their parents were enjoying the socialization with each other. This playground is serving a huge need right there. The isolation for parents of special needs kids, especially in those early years, makes a difficult situation harder. These parents have each other. Instead of meeting in the waiting room at the neurologist office or in a formal support group, they are hanging together in a normal childhood setting. That is progress; it is something I certainly never had when Maggie was little.

*St Mary?s park is at Justin and Murray Streets in San Francisco, the playground is down the hill. The accessible entrance is at Justin and Benton Streets. In addition to the playground, there is a baseball field, basketball and tennis courts and a dog run. There is something for everybody. Check it out.

One Man's Ceiling...

It is rare that I stop and say a quick prayer of Thanksgiving for Maggie’s circumstances. Do not get me wrong, there have been numerous close calls and I am always very thankful they work out for the best. IN addition, I do realize that caring for Maggie has made me a better person and I am thankful for that as well. However, Maggie’s circumstances have never been something for which I was thankful. That changed a little this week.

I met a woman about my age that has a severely disabled sister. The sister is 49 years old and is cared for at home by her aging but capable mother without any help. The mom does not want any help and has devoted her life to caring for her disabled daughter. The woman I met said that her sister cannot do anything like Maggie can. She does not have any communication (except her mother always understands what she wants/needs), does not have any activities, etc.

I realized then that Maggie would be in exactly the same boat if she were born a generation earlier. IN fact, there is almost now questions that Maggie would not have survived if she were born even a few years earlier. It is not the cerebral palsy, but the several other complicated medical issues with which she was born. I told the woman, Maggie could not do anything either, but they started working with her when she was just a few months old. I did not understand the purpose of many of the things they did in those early days, but I went along because Maggie seemed to enjoy it. I understand now that all those toys and activities were building blocks for Maggie to use to develop skills for communication, positioning, etc.

I am thankful that Maggie was born in 1994 and not 1960. I am thankful she was born in a big city so close to the cutting edge medical care she needed (and still needs), and that she received therapy from dedicated talented professionals who worked together and separately to give Maggie a better life. Moreover, while the passage of time generally means advancement in technology, I find myself thankful that t she was not born now when many of these programs are disappearing under the budget axe.

I am thankful that the great school program that she is part of exists in San Francisco and her great teachers, from Pre-K to High school believed in her and helped her learn. I am thankful there is a place for her in the world and that people get to spend time with and enjoy her sense of humor. I am especially thankful for the nursing help I have because I could not do for one week what that mother has done for 49 years.

I still wish Maggie were a typical teenager giving me fits for her behavior in typical ways, not for the way she behaves when her diaper is being changed. I wish I did not have the insight I do to realize how lucky she is. But I do and she is. And that makes me thankful.