Blast from the Past

I found this picture and decided I needed to scan it. There are really very few of Maggie and me alone, even though 75% of the time, that's how it was - just me and her.

This was taken at an early morning soccer game for on of the boys. When Maggie was little and I could carry her, we went to all the games. That became more difficult as she got older; wheelchairs and fields are not a good combination. She always had fun on these outings, though her favorite sporting event was the basketball games. Those were inside, lasted less than an hour and had all the great noises. Soccer was second and baseball a distant third. The baseball games were too long and too cold for her.

I'm guessing this was 1996 or 1997. As I said on facebook, it is far to late for the Dorothy Hamill haircut I'm sporting.

Miss Maggie more and more every day.

And just for you youngsters. Here's Dorothy Hamill, gold medalist at the 1976 Winter Olympics 

with he haircut that everyone copied. But not for 20 years

And no. I cannot skate. 

One in a million

The conference I attended in Boston was interesting. It involves way to get families more involved in and welcomed into the medical decision making process involving their children, and in the case of those who are able, getting the patients themselves involved. It was a conference of mostly doctors with nursing administration and one bedside nurse there as well as about four family representatives (I was one of those). The fact that families are even included in this process is a good sign of thing to come. It is a culture shift for many medical providers and for many families as well.

One of the many things that came out of this was that medical personnel need to avoid the use of medical jargon when dealing with families. I wholeheartedly agree with this. Things like acronyms and abbreviations of medical terms tend to exclude those who don't understand the reference. Medical terms are necessary, but the jargon that accompanies them is not.

One presenter also warned against the use of "numeracy." I had to ask the woman next to me what that meant. It is defined as "the ability to understand and work with numbers," and from context I understood it to mean that medical people need to stop communicating in numbers when speaking to families. The whole idea of including families is to open the two way lines of communication and using stats and numbers can preclude that.  Many folks cannot comprehend the numeracy and therefor lose the message being conveyed and cannot ask relevant questions etc, which shuts down meaningful communication.

I smiled to myself because I remember calling a doctor out on this- even though I didn't know what it was called -  very early in Maggie's life.  During her course in the NICU ( oops, that's jargon right there, that's the Neonatal intensive care unit) the doctors were trying to convey Maggie's situation. While I don't remember the numbers specifically, the conversations went something like this.

"only 1 in 100,000 babies are born with this, but of that .01%, 3/5 will have XXX complication. (Maggie had it). Of those with XXX, 2/3 will have YYY complication (Maggie had it) of those with YYY, 1 in 7 will have ZZZ complication. (Maggie had it)
  
I was completely lost after the first statistic and told him to stop. I said, " I do NOT care how many people DON'T have this. I get it, it's rare. She's the 1, She's ALWAYS the one. I'm going to buy her a lotto ticket because she's ALWAYS the one.  I just want to know what the plan is to deal with it."

I shut down the numbers game and focused back on straight communication, mostly because I needed to understand. Seems I was just 20 years ahead of my time.

And Maggie proved early that she was One in a Million.

Concentrate on the Happy

The other day I ran to Safeway to get something for dinner. As I walked in a woman and I exchanged glances and then looked way. It took us both a minute to realize we knew each other an then hit us both at the same moment. We each greeted each other warmly and caught up right there in front of the supermarket.

Her name is Sherry and I knew her many years ago when Maggie was very little. Her twins are the same age as Maggie and we did a lot of the early intervention stuff together and went to all the same birthday parties and other social outings.

Sherry was a single mom, which is overwhelming, of twins, which is also overwhelming, and one of them had serious medical issues, which is incredibly overwhelming. Those early years were incredibly difficult for her.

By the time the kids were about four, we had already drifted apart as our lives took us in different directions. Her daughter's issues were medical, and she did not have the special education component that Maggie had. They went to different schools and life proceeded for all of us in different ways. Occasionally I would run into Sherry and we would catch up, but I think before last week, it had been about 10 years since I had seen her.

Of course I asked about her girls and was beyond delighted to hear that both are in college and that the one with the prior medical issues is now in nursing school. Really it took my breath away. I told Steve when he got home and he summed it up best. He said, simply, "That is outstanding."

When I think back on those early days it's very difficult to remember having any hope for the future. We were all so overwhelmed with the present, there simply wasn't time to think about the future. Keeping our kids alive was our first priority, and too many of my friends from those early days lost that basic battle.

When I arrived home I found myself very emotional, even a little teary. Initially, I wasn't really sure why and stopped to try to untangle all the different things I was feeling. I was so happy that things worked out so well for them, especially given the overwhelming start they all faced and I was sad for the kids who didn't make it. At the same time I felt extremely exhausted remembering those days and knowing I had been doing all of this for nearly 20 years. There were probably a hundred other things too, but those are the ones I could identify. I just kind of let things flow for a few minutes and then decided to concentrate on the happy.

Sometimes you just have to concentrate on the happy.

I am proud to have survived those early years and proud to know the people I met then and now in Maggie's World. We have all been tested in different ways and each of us has succeeded. Our kids have lived their lives - however short some were - in the best possible way and realized their potential. I just never knew then that potential was so high for some of them.

It is outstanding.

A Rose by any other name

This a a picture of my grandmother, Rose Fitzpatrick Casey. I never met her, she died 19 years before she was born. I think Maggie looks a bit like her. And today she is looking for her as well. 

Maggie is completing an assignment today; but it was not assigned by her own teacher, rather by her Uncle Pat who also happens to be a teacher. Maggie and her classmates have an appointment at the Mission high Museum today so she can do her best to complete the assignment.

This all started a few weeks ago when my brother Pat asked me if I knew where our grandmother Rose Fitzpatrick Casey had gone to high school. Pat has a lot of the family documents (such as they are) but nothing that answered this question. Because of presentations I did at a couple of family reunions, I know a lot of family history, but I didn't know the answer to this question either. Most of my knowledge and the documents involve the Casey's, the paternal side of the family, not the Fitzpatricks on the maternal side.

Pat had already checked with my mom and she didn't know. Her mother Rose died in 1937 when my mom was just a little girl. Her older siblings likely knew, but the last of her siblings died earlier this year. We were sad to realize that meant there as no one left to ask. Naturally that also meant we HAD TO KNOW.

There weren't very many high schools in San Francisco at that time and the one that was full of the Irish was none other than Mission High, the very school Maggie attends today. We know Rose younger siblings Joe and Alice went to Mission, so it is likely that she did as well. Since we have our very own Mission High student, Maggie was the logical one to take this on.

Fortunately, Mission High has a museum. This school recognizes its place in San Francisco history and has taken care to preserve it. I love that.   There is a wrinkle, though. Rose was born in 1891, which means she would have been in high school in 1906, when the great Fire and Earthquake rocked San Francisco. It is likely her education was interrupted by that event and it is possible that records were destroyed. Maggie is on the job and I hope they find something.

I would venture to guess that if she is successful, Maggie will be the only student at the school who can claim a connection from 100+ years ago. It just doesn't happen anywhere very often and especially in this city, which has always been a mecca for newcomers. Mission High has long been a school for the newest populations. In the early 1900's those newcomers were the Irish, like Rose Fitzpatrick. Today Mission is full of students from dozens of countries, who speak numerous different languages. That's part of what makes it so interesting, but also makes it far less likely that anyone else has a great grandmother that went there.

As I sit here typing this, Maggie is doing her thing, digging through the archives. I do hope she has help or those precious historical records will be strewn all over the place.

Stay tuned.

Rose on her wedding day to my grandfather John Casey. She made her own dress. That's her sister Sara behind her and I'm not sure who the best man is.

don't you think they look a bit alike?


 

Noise from the past

Hello out there. I've been buried under work and spring break and Easter and everything, but I have now come up for air. Hope all is well in your world.

Last week an old friend came over for dinner with his family. Geordie and I practiced law together 25 years ago. He moved back to Portland and other than one brief encounter about 3 years ago, I haven't seen him in probably 18 years. His son and Maggie are the same age and both were babies the last time we spent any time together. It was great to see him and his family and all those years melted away as we reminisced and bored his kids and Maggie with old stories.

Geordie was a few years behind me and I was one rung up on the food chain. For a short while,  I was kinda sorta the associate to whom he reported. He and Craig, another lawyer, were hilarious and those were some fun years. They did a video mocking my office full of books and my encouraging style of editing their work. I never realized until I saw that video that I would constantly tell them what a great piece they had written while completely changing it. The video showed only a head behind huge stack of books effusively praising the work and then handing over a legal brief with red marks and inserts completely covering the page. Made me laugh then, and still does today.

Because I was older and wiser I was the first of that group to have babies. (Babies were a sensitive subject for female attorneys when Eddie was born in 1988 and probably still is today.  That subject is for another day, however.) Geordie and Craig took it upon themselves to shower Eddie and Tim with gifts - always the noisiest gifts possible.

Before they arrived for dinner, Geordie's wife Lori was texting me about the plans to get together. She advised that Geordie was bringing a Bow and Arrow set for Tim and a drum set for Eddie. That made me remember something and I knew I had a picture. I went upstairs and stated digging through old pictures* until I found what I was looking for. Eddie holding the JACKHAMMER those guys gave him when he was about three.

You cannot imagine how loud that thing was. But my boys loved it and played with it all the time. ALL. THE. TIME. 

It was hilarious to hear Geordie and Lori tell their kids about visiting here with our two wild boys jumping on furniture and racing around while Steve and I were calm cool and collected. (Funny, I don't remember either the wildness or ever being calm.) They said we made it look easy so they figured having kids wasn't that big of a deal.

(Picture me with my head thrown back laughing wickedly.)

It was amazing to think back to those times before Maggie was born. Our life was just as crazy then as it is now, but in a more conventional way.  Maggie was not nearly as entertained as we were, though, because even if she wasn't born, she cannot imagine a time when she was not the center of the world.

*Lest you think otherwise, I did give Eddie fair warning that I was going to post this picture and he put it on facebook first. 

Somebody's Watching You

In yesterdays post I mentioned that Maggie snagged a bag of bagels while shopping at Safeway with Steve and his friend Chris the other day. Steve went back and paid for them, of course. When they arrived home, we talked about all the other things we have found in Maggie's chair over the years. There have been hairbrushes, spoons, hair clips by the dozens, toys and anything else that was in reach.The bagels were in plain sight on the tray; but generally she grabs things, can't really hold onto them and they slip down into the side of her lap.

The best many years ago when  we went to buy Eddie some new eye glasses. Thanks to the genes he inherited from me, Eddie has worn glasses since kindergarten. He would need a new pair every year or so and we would go pick them out and order them. When he was in about the third grade we went to try a new place on West Portal. I walked in with Eddie and Tim and had Maggie in her tiny stroller/wheelchair. The kids were probably 8, 6 and 2.  The woman was waiting on someone else and made it clear from the moment we walked in that she did not like kids.

At all.

And especially not boys.

I ignored her. The boys definitely had their moments of being rambunctious, but this particular day was not one of them. They were calm and well behaved. As we waited, Eddie started trying on different pairs of glasses and carefully returning the ones he didn't like. The woman looked up and snapped, "They really shouldn't touch those." I responded, well, we're here to get him new glasses, so he has to try them on. (I pretended not to notice that Tim was also trying them on.)  She went back to her customer and after about a minute looked up and said something else snotty. That was enough. If I'm going to plop down money for a product, I think someone should at least be nice to us. I said, "Clearly you do not want our business, we will go somewhere else." She started to retract, but it was too late. The four of us filed out of the store in a very dignified manner. Haughty might be the best word for it.

As we headed back to the car, the boys and I were laughing at what a grump she was. Even Eddie said, And we were being GOOD! she should see us when we're BAD. I opened the doors and the boys hopped in. Maggie was so little then that she sat in the car seat and we folded her wheelchair in the back. I opened Maggies' door, readied the car seat, undid all her straps, lifted her into the car and strapped her into the car seat. I turned to fold up the wheelchair and saw them.

A lovely set of eyeglass frames sitting on the seat.

I winced. While the grumpy lady was yelling at my perfectly behaved sons, my tiny disabled daughter was stealing her blind.   I picked them up and showed the boys and their eyes bulged in surprise. I though of our dignified and haughty exit and winced again, knowing we had to return these.  Being the chicken that I am, I had one of the boys do it. (I thought it was Tim, but he doesn't remember.) Either Eddie or Tim took the frames, ran the two doors up to the store where the grumpy lady was still waiting on her customer, laid the frames on the counter and said, "My sister took these. Sorry." And then ran back to the car. We laughed our heads off.

We decided to go glasses shopping another day and we all went for ice cream.

Maggie didn't get any ice cream*, but she had the total respect of her brothers, that's for sure.




*no reward for stealing, but she also happens to be deathly allergic to dairy and can't eat by mouth anyway, so not sure it would have been a reward.

Edit - I just realized I wrote this story already about a year ago. Oh well, it's worth a re-tell.
 

Maeve Binchy

Irish Author Maeve Binchy died this week. She was only 72. I believe I read every single one of her books. They are not important pieces of literature, nor do they pretend to be; but they are interesting, fun novels with wonderful characters. One of her books, Firefly Summer very likely saved me from completely losing my mind in 1994.

It was September, Maggie was six months old. She had already endured five or six fairly major surgeries to repair some of the physical anomalies with which she was born. I still believed that she was going to catch up, that she was having a rough start but once they fixed everything she would be OK. That was the only way I could cope.

Now there was a new problem. Maggie was crying uncontrollably and seemed to be in pain. I went to her surgeon, with whom I had a wonderful relationship. It wasn't anything from her surgeries but I still remember him looking at me and saying "I am very impressed with the size of her head." Somehow I knew that he was  not impressed  in a favorable way, but impressed  as in it was making an impression. I remember very clearly walking home through Golden Gate Park that day with a feeling of dread.

I called her pediatrician and she immediately sent Maggie for an ultrasound of her brain. The radiologist confirmed Maggie had hydrocephalus, a build up of fluid on the brain. We were sent up to UCSF and met with a neurosurgeon just outside the operating room. I still remember he was wearing low top Chuck Taylor's, (converse shoes), which was oddly comforting.  He reassured us and whisked Maggie into surgery. They were going to put in a shunt to get the fluid off her brain. There were complicating factors though. The buildup of fluid was because of a brain bleed sometime earlier. They could not do the shunt until Maggie stabilized. She went from surgery to the Pediatric ICU (PICU) with an external drain coming out of her head.

This has happened several times since and now I know the drill, but that first time was horrific. I felt my dream of Maggie's normal life slipping away. We knew she would be in the ICU for a while, but we had no idea how long. (I believe it ended up being three weeks that time.) Maggie was in an open ward and the noise and drama was very difficult to take. There were beeps and  bongs from every patient. There was emotion at every bedside, including ours. I sat next to Maggie's crib in a high desk chair for days. I held her hand and waited for her to get better. I was going out of my mind.

When Maggie is in the hospital, the most intellectual reading I do is People magazine. I read all about celebrities I never heard of and find out who is dating/marrying/divorcing whom. That wasn't going to cut it this time, though. I needed more; I needed to escape the noise, the emotion and especially the fear.

I brought Firefly Summer to the hospital. I think my sister Mary gave it to me and suggested I read it but it had been sitting at home for several weeks.  The book was long - 672 pages (I just looked that up on Amazon). I doubted I would get into it, but from the first page I was hooked. I sat at Maggie's bedside holding her hand as she slept - and she slept a LOT. I flipped the pages using the thumb of the same hand holding the book.

The noise and drama of the PICU melted away I was transported to the Irish country side. I was lost in a world of young people enjoying a summer as their little world faced changes from development.  I still remember Kate, the main character of that story and I remember there was a young girl named Maggie. I read every moment I could and finished the book in about three days, which is fast when you factor in hundreds of  interruptions  involving very serious conversations with neurosurgeons, neurologists, pediatricians, hospitalists, nurses, respriatory therapists and dozens of other medical professionals every day.

 I couldn't tell you exactly what happened in that book but I know this: That book saved me at one of the lowest times of my life.

I hope Maeve Binchy did not suffer through what I read was a "short illness." I hope she had a good book to read to stave off the pain or fear or whatever she was facing.  It really makes all the difference.

Rest in Peace, Maeve. And thank you.

Having it all, whatever that is.

Today I read Why Women Still Can't Have it All  by Anne Marie Slaughter in the Atlantic Monthly.  I have seen it everywhere I turn today. If you haven't read it, you should. It's long, but worth the time spent. The author dares to speak some truths about valuing family obligations despite societal expectations. Though her specific experiences are very very different than mine, the underlying similarities are there. We need to not only respect the choices people make regarding their families, but to honor them and give them a place in a successful career. We need also to find a way to respect situations different from our own without judgement, especially where the luxury of choice is not present. 


  I started practicing law in 1985 when I graduated from law school and passed the bar exam. I went steadily up the tiers toward partnership for a few years and then had a baby. I went back to work full time and managed everything very nicely. Then I had another baby and did the same thing, though the juggling act was markedly more difficult with two kids. I thought I resumed my climb but found out later that those two maternity leaves were really quite the career error. It was made very clear to me that despite my aptitude for and commitment to the work, I had been placed on a "mommy track". And the mommy track at this particular place was not a different track leading to the same place, but a dead end. but  It was blatant sexism. I changed jobs and started up again.

As Professor Harold Hill says: The sadder but wiser girl is the girl for me.

A couple of years after all this happened Maggie was born. At first we thought she would have a complicated course in infancy but would be OK after several surgeries. Things became increasingly complicated over those first weeks and  it became clear very quickly that my career was over - or at least on a very significant hiatus. I suppose it didn't have to be my career, it could have been Steve who left work. I don't remember ever even having a discussion about that. And to be clear, I don't feel even the least bit resentful about that. (and I don't think he does either.) 


Some people understood the situation. Others did not. I was asked when I was going back to work, why couldn't I meet them for drinks, why was I giving up all my expertise. I was told that I wasted my education, that I was too smart for this. Other people had expectations of me. I had expectations of myself. All those expectations went out the window when Maggie was born. For a long time I grieved for what I lost, but I had to reinvent myself, and we had to reinvent our family.  


It wasn't a conscious choice in any way. Something had to give. This wasn't just a matter of daycare versus at home parenting, this was life and death. Maggie could not go to a daycare and we could not afford the round the clock nursing care that she needed.  Maggie needed me in different way than most babies and the boys needed me in a way that all kids need a parent with the additional issues of worrying about their baby sister. I needed to care for all of them - for all of us; moreover, I wanted to do it. We were under siege and I was protecting my family. It was instinctual. It was hard. It was expensive. It was scary We had to change everything and work 24 hours a day to keep everything moving, but we did it. 

We slowly built a new life and learned everything there was to know about all of Maggie's medical and developmental issues. I was her advocate, her voice. I kept the boys on track and weaved all of this medical stuff into our lives in a way that felt almost seamless. It was working. Then one day someone said to me,, "I know she's sick, but you have to live your life too."  That was especially offensive. I WAS living my life. I AM living my life. 


 People feel sorry for us because of our circumstances,we have a disabled child, we had to sacrifice 50% of our income, I had to give up my career, we can't travel, etc etc etc.Our life did not turn out the way anyone expected, least of all us. 


Do I miss my old life? All the time. 
Did we wish for this life? Certainly not. 
Do we wish things were different? Of course. 
Did we expect this life? Not in a million years. 


Did we survive? You bet!


Have we made the best of things? Absolutely.  


Am I proud of that? 


You better believe it. 






  

Home at Last

This is in response to writing prompt was on a  on a couple of other blogs I follow, (Motherhood and Words and A moon, worn as if it were a shell.) You should try it.  Elizabeth has instructions on what to do with your essay here
:

Sensory Details as a Way to Begin 

Think about the time when your child (or one of your children) was born, when she first arrived home, or even before she was born. If you adopted your child, maybe you want to focus on the first time you saw her photo. Is there a certain smell, sound, taste, texture, or picture that comes to mind? Start with that. Write it down. What other concrete details do you remember? Let your mind wander. Jump from image to image. Try to use as many sensory, concrete details as you can. Don’t pick up your pen—just keep moving it across the paper—and don’t worry about grammar or spelling.

If those early days and months feel too far removed, choose another period in your child’s life that seemed particularly vivid to you, and begin writing details from that time.

_____________________________________________________________________________

Home at Last

I arrived at the hospital carseat in hand.  During our stay, I had seen so many parents come into the Neonatal Intensive Care Unit (NICU) with their carseats ready to take their babies home.  I remember asking the dad of triplets that went home at separate times “How are you going to do this?”  He laughed and shrugged.  Another mom arrived with the carseat only to discover her baby could not go home yet after all. That was crushing for everyone in the NICU.  Her baby did go home a few days later healthy and strong and everyone applauded.  I completely connected with those parents but never saw them again after they walked out with their shiny carseats. 

Today was our turn.  It had been 11 weeks and 2 days since Maggie was born and she was finally coming home. I was ready. Ready to have her home, ready to stop spending days at the hospital learning so many things I did not want to know.   I was ready to have my entire family under one roof, ready to stop pretending to my three and 5 year old sons that everything was ok. I would not have to pretend when she was home. It would all be fine. I knew all about the gastrostomy feedings and the colostomy. We could give her oxygen at home just as well as they could do it at the hospital.  I was scared, but I was ready.

It took hours for everything to come together so we could go home. It always does, but that wait was interminable.  I needed to have my little girl home.  I needed to be mom, I needed to be in charge, not to rely on nurses or wait for doctors anymore.   The time dragged while we waited for all the necessary pieces to come together.  I had to demonstrate that I could do the procedures Maggie needed. All the specialists had instructions and follow up appointments to confirm. There were well wishes and celebration too. Finally, the hospital had to ensure that we had all the supplies we needed to care for Maggie at home. Colostomy bags? Check. Feeding tubes? Check Syringes? Diapers?  Check. Oxygen?  Oxygen tubes? On the way.

Oxygen, life sustaining though it may be, was almost my undoing. The oxygen guy showed up at the hospital and started loading “e-tanks” next to all my stuff. There were at least six of them.  I was supposed to move these tanks along with all Maggie and all of her supplies and her shiny car seat.

My resolve failed. This was more than I could do. I could not even get her home. How in the world could I take care of her? 

 I stared at those tanks knowing I was a fraud. The nurse saw my stricken face and asked what the problem was. I fought back tears, pointed to the six heavy tanks, and said I cannot move all of those. Without hesitation, she barked at the oxygen guy saying, “You cannot leave this stuff here, take it to the patient’s house.”  She was the type of woman you do not trifle with. He sighed and loaded the tanks back onto the dolly.

 I looked at the nurse and gave her a wan smile. This was a house of cards and we both knew it. We just had to get home before a large wind came and knocked out house down.

 That was 18 years ago and oxygen tanks, still part of our life, do not scare me anymore The house of cards still stands.

______________________________________________________________________

Looking Back

My sister in law sent me an envelope full of pictures the other day. These were pictures she brought up for Maggie's birthday party and displayed on the table. There are several, all of which are good, but this one just melted my heart.

It's from 1998. Tim (age 8) is carrying Maggie (age 4) out to the dance floor at my niece's wedding. I love The proud look on Tim's face. I also love that Steve is letting Tim do it, but standing at the ready to support Maggie's head . I wonder if they danced like that.

This is Kelly's wedding in Helena, Montana in which Maggie was the flower girl. I've written about that before in Maggie World: Big Sky Invasion. Seems like yesterday, but Kelly and James are approaching their 12th anniversary and has three lovely daughters, all of whom are older than Maggie is in this picture.

Steve looks a lot younger than he does now, which is interesting because I haven't aged a bit.

Tempus fugit.

Trach-a-versary

Today is the 5th anniversary of Maggie getting her trach. Five years! that is unbelievable to me.

Right after her birthday in 2007, Maggie was admitted to the hospital with pneumonia. Though she had pneumonia many times before (and since) then, I knew it was bad. She needed the highest possible levels of oxygen and was still gasping for air. Her trachea, which was never anatomically correct, was collapsing and she could not get the air she needed into her lungs. We already knew from tests done months earlier that her airway obstructed her breathing during sleep and they had discussed a trach already, but I was sure she wouldn't need it. My rationale: She had this airway problem since birth and she had always done OK. We know what we are doing. On most kids the airway problems resolve on their own. It didn't with Maggie and as she grew it was getting worse. Then the pneumonia hit, and her body just couldn't keep up with her increased oxygen needs.  After about a week in the hospital we were told that she needed the trach to survive. No more rationalizing.

She was in the hospital a total of three weeks that go 'round. Two weeks before and a little over a wee after the surgery. We couldn't go home until it was safe to change the trach tube because they had to be certain we knew how. Of course it wasn't safe to even try to change it until the surgical site had several days to heal. When she finally got out of the hospital, we came home to a room filled with much more medical equipment and supplies. It was the most overwhelmed I felt since Maggie first came home from the NICU when she was three months old.

 I've said many times that we have a love/hate relationship with her tracheostomy. The love part is easy: Without question that thing saved her life. I don't think she would have lasted the week, five years ago or today, without it. The hate part is more complicated.

Before Maggie had her trach, caring for her was time consuming and difficult, or so we thought. After the trach, her care needs went into the stratosphere. She has to have someone intervening to suction or do some other intervention every minute of so. The constant vigilance is exhausting.

The first year or so after the trach was placed we almost lost her a number of times. It seemed the trach caused as many problems as it solved. After a few 911 calls,  multiple hospitalizations, changes in treatment plans and scary episodes, many of those resolved and we settled into our current state. There are still emergencies, in fact we had one on Saturday evening. The trach tube comes out and Maggie gets into distress fairly quickly. Though I have done it alone several times, it is really a two person job to get a new trach tube in and tied properly.

On a less dramatic front, the thing is scary looking and made my beautiful daughter into something of a freak. It was bad enough before the trach. The wheelchair, the communication device etc, but the trach tube is on her body and it creeps people out. Stupid, I know, but that's part of the "hate" side of the equation.

In the five years that she's had the tracheostomy, Maggie has thrived. She continues to have unbelievable medical needs, but she is far healthier today than she has been in many years.  In those five years she completed middle school, started high school, attended two proms, has friends, discovered Beyonce and pop music, really took off using her dynavox to communicate and figured out how to order us around. She is living her life and that would not have been possible without the trach.

I think the love outweighs the hate.

Blast for the Past

I have been going through old pictures and cracking up.  I found this one of Maggie in probably 1997 or 1998, making her three or four years old. We are at the Giant's Game - and this is in Candlestick, before the new stadium was completed. She was having a great time.

I should probably wait to post this for opening day of the Baseball season next month,  but I will likely forget if I don't do it now. I do miss those curls. That's Eddie with his ever present buzz cut in the foreground.

Comfort Food

I made a chicken pot pie the other night. Not really earth shaking news, I realize. For whatever reason, I've never made one before. I've defrosted several and I have done the Bisquick and cream of chicken soup trick, but never made one from scratch until the other night. Big mistake was starting this project at 6PM. We didn't eat until 8 and I worked pretty much that entire two hours cooking all the parts, including the topping, and putting it together. Its much more of a rainy Sunday afternoon project and I will try it again when I'm not so rushed.

It was good. Not the best I've ever had, but good.

The best I ever had was a week or so after Maggie was born. She was still in the NICU and we were reeling trying to adjust to everything while still handling two little boys. One of the moms of a kindergartner in Eddie's class organized  the parents to volunteer to bring us dinners. That was a godsend. I could spend the entire day at the hospital because Eddie was in Kindergarten and Tim was in preschool. I picked them up at the end of the day and went home and didn't have to think about shopping of cooking or anything.

The organizing mom, (whose name I cannot recall because they moved away at the end of that year) was the first to bring dinner and it was a giant dish of chicken pot pie. I served some to the boys and sat down with them to eat. Steve went to the hospital after work in the evening. The first bite calmed my frayed nerves and melted in my mouth. I think that is when I fully understood the meaning of the term comfort food.

The next morning I had some more for breakfast and it had the same effect. It seemed to strengthen me for the day ahead facing medical terminology I did not yet understand and wondering if Maggie would make it another day. I ate it for every single meal until it was gone. That was nearly 18 years ago and I can still remember how good that stuff made me feel. I could feel the nourishment, the kindness and the support of people in every bite.

Maybe that's why I've never tried to make it. There is no way I could ever measure up.

Do something good

Why is it only the bad days that stick in our collective memory.

November 22. It's STILL one of those days. In 1963 I was in the second grade lined up (arms distance) to come in from recess at Our Lady of Mercy School when Father Power came out of the Rectory and said something to the nuns. I remember one nun started to cry. I had never seen a  nun cry and was amazed by that.

We filed inside and learned the President Kennedy had been shot. We watched the television on the large rolling stand in the classroom. When they said he died, they sent us home. I remember walking home in an eerie quiet. There were no cars on Southgate Avenue, something I then thought of as a busy street. I remember thinking my dad was going to be mad about this, because when you are seven years old your entire world is your parents world.

 I don't know why I was walking alone, not that I was concerned about that. It was a calmer time and seven year olds walked home alone all the time. I just wonder why my sisters weren't with me. Three of us went to the same school. Maybe they sent the little kids home first. Funny, I remember some things so crystal clear and cannot explain others.

What amazes me is that you have to be about my age to even remember that day at all. It was day that changed everything and no one under 50 could possibly remember. Weird.  My parents spoke of Pearl Harbor but that was ancient history when I was a kid. Same effect here.

There have been other days. Everybody remembers where they were when the space shuttle exploded and, of course, nothing can compare to September 11. But that was 10 years ago and probably anyone under 13 doesn't remember that. Time marches on. New things happen to define our world.

Maybe the next one will be something good.

Do something good today.

Memories of the Bay Bridge Series

Twenty two years ago today  I was sitting at Candlestick park waiting for Game 3 of the World Series to start. The Giants were playing the Oakland A's in the "Bay Bridge Series" The Giants were down 2 games to none but this was the first home game and we were sure things were gong to turn around. The crowd was excited and anticipation was building for the game to start.

It was the first (and only) World Series game I ever attended. We had gone in on a "strip" of tickets with some guys I worked with and we were able to go to one of the playoff games and one World Series Game. If it went to 6 games we would get to go to two. The Giants had to win so we could come back again. We actually had great seats, which was funny because we were not season ticket holders. We just sort of lucked out. Section 10 under the overhang just behind third base. We met the couple next to us at the playoff game and of course they were back for the World Series. They were entertaining and hilarious and this was going to be great.

At 5:04PM I felt the place starting to shake. I grinned thinking it was the people above me stamping their feet but realized immediately that only happened in bleachers, not in concrete stadiums. What was this? My eye went to a television cameraman who was standing in a "cage" handing off the mezzanine level. It was there just for the World Series. I watched him lose his balance and hold onto that side of that cage with all his might.He looked frightened but for a split second I didn't know why.  At that very moment the ground under me felt like it was undulating. I looked at Steve and we just rode that earthquake out. It was easily the biggest one I've ever felt before or since. We were experiencing the Loma Prieta earthquake which was 7.1 on the Richter scale.

Immediately after it stopped there was dead silence and then a ROAR arose from the crowd, It was really almost a cheer. I learned later that Atlee Hammaker, a pitcher for the giants said, "That was the tide turning." Everyone was still focused on the World Series. The Giants were going to turn it around for sure now. The immediate shout of relief, fear, exuberance, whatever, quickly gave way to concern. The television the guy in front of us had been watching lost its picture.

I was about 8 weeks pregnant with Tim and perhaps a teeny bit more emotional than most people there. I told Steve I wanted to go home. Eddie was 18 months old and my friend Anna was watching him. I just wanted out. Steve said we just have to wait. I begged him to move out from under the overhang. Steve said "that's reinforced steel and concrete, it's not going anywhere."  Just then the picture can back on the man's tv and we were looking at pictures of the collapsed Bay Bridge. I looked at Steve and said, Oh, really? Whats THAT made out of?" We moved.

It wasn't necessary. Candlestick park was not collapsing. The game was called off, of course and we made our way back to the car. It took three hours to get home  - in fact it was 1.5 hours just to get out of the parking lot. I was frantic, but outwardly calm. Everyone was. it was a beautiful day. Spectacularly clear. We could see the smoke in the Marina from  the fires. We were listening to disaster reporting. That was strange. They were talking about US, but we were fine.

Power was out everywhere. It was a long slow trip home.We kept hearing the same reports over and over. There was no discussion about our neighborhood at all. I said that's probably good news - or the entire place is gone and there's no one to report it. (Still not quite as calm as I could have been.) As we drove through the Richmond District, I saw lots of damage especially at the corner houses. As we neared Anna's house I saw a crowd of people at an Irish Bar on Geary. It was powered by candles, but the place was packed. I considered this a good sign. We retrieved Eddie who told us about BIG SHAKES. (He was also mad that Anna had stolen the batteries out of his toy to use in a flashlight).

When we arrived at home my brother in law Jim was sitting on our front steps, his finger stitched up from glass falling on him. He couldn't make it across the Bay to Oakland where his wife (my sister Kate) and her (then) three kids were waiting. Somehow they had connected by phone, so each knew the other was ok. Jim said he walked to our house from downtown (probably 4 miles) because he knew it would be standing. Steve had bolted the house to the foundation a few months before. He and Steve started eating the melting ice cream and drinking the beer that was getting warm. Eddie needed to go to bed so I laid down with him and listened to my Sony Walkman for updated reports. There weren't any. It was too early.

In the light of day we learned more about he Bridge collapse and the people killed there and on the freeway in Oakland. We learned about the extent of the fire in the Marina and learned of more victims there. In our house we saw that a few things had broken - but just a few. The fish tank had sloshed over and damaged the wood floor, but that was it. We felt very very lucky.

The World Series continues a few weeks later, but nobody really cared anymore. There were bigger tings to worry about. The Giants lost the series 4-0 and didn't return until 2002 and didn't win it until 2010. I didn't even make an attempt to go to the series in 2002 or 2010. I think my one experience at a World Series game was enough

Pre teen and pre trach

Girls Rock Camp did not go well today. Maggie is coming down with something and making me quite nervous. She cannot seem to stay awake. She is "with it" - not lethargic (which is VERY bad) but she seems completely exhausted and she needed extra oxygen for a little bit today. She perked up later in the afternoon, but she spent her time at camp and most of the rest of the day like this, sound asleep.

You cannot see Barb who is holding her because there are other kids visible and I don't want to put up pics of kids I don't know. Barb was Maggie's physical therapist in middle school. Yesterday we saw Carmen who was her PT at the end of elementary school and today we also saw Alana, who handled Maggie is her early elementary years. Alana recently found these pictures from those days - maybe 8 or 9 years ago and shared them with me. These were from a power mobility camp. Maggie was trying to learn how to use the power chair. She still does it some, but we gave up on the joystick and now she drives with her head. It is very difficult for Maggie, but she loves loves loves doing it. 

There she is, pre-teen and pre-trach, missing teeth and all. I do miss her curly hair. It just disappeared over the years.  I always think she looks so young until I see the pictures from many years ago.

If Maggie doesn't perk up, tomorrow may be "Doctor Rock" camp instead of Girls Rock. 

Becky

 For reasons I cannot explain, I remembered this story today. Maggie was about 3. Mattel - the creator of Barbie came out with Barbie's friend "Becky" who used a wheelchair. It was sort of the "wheelchair Barbie", but it was NOT Barbie, per se. The perfect Barbie persona was unfettered by the stigma of disability.

Eddie was adamant that we had to buy that for Maggie. This was not a toy Maggie could enjoy then or now. It was sharp and angular and could hurt her. But Eddie, who was about 9 years old, was so insistent that she had to have it. He said Maggie was in a wheelchair and should have a doll that looked like her. He said he would pay for it himself and pulled out his (empty) wallet when we were in Toys R Us.. I just stared at him, floored. That was so sweet. I told him it wasn't necessary and I bought it for an incredibly inflated price.  I was so impressed with his thoughtfulness, the price didn't matter and  I forgot about the inappropriateness of the toy. I was proud of him; I figured the toy could sit on a shelf, a testament to her brother's concern for her.

As fate would have it, a couple of days after Becky joined our household, Maggie ended up in the hospital for an extended stay. The boys were shipped off to one of my sisters. (There were so many times I can't remember which sister stepped up when - but they all did). Maggie was in intensive care and Steve and I came home to sleep for a couple of hours. The house had been thoroughly cleaned just before Maggie got sick, and the boys were gone so it was still very neat when we came home. The only evidence that anyone lived there was the Becky toy in the middle of the living room.

I looked at it and started to laugh, despite the gravity of Maggie's illness. Becky the doll was tossed out of the wheelchair and was lying on the couch with her perfect hair hanging down across her face. Apparently, her wheelchair had been commandeered by the government. It was being used by one of Eddie's GI Joes, who had undoubtedly suffered an ugly injury relegating Becky to the couch.

It was one of those moments that pops into my head frequently. (In fact if I've written this before forgive me, I haven't slept in days) My pride in Eddie's generosity was not diminished in the least by this turn of events. He didn't plan this - it was just creative. But walking in and seeing this changed a very dark moment into a very light hearted one, for Steve and for me. In fact, just before writing this I started to tell Steve the story and he finished it for me. It affected both of us deeply and still cracks me up to remember.

Somehow I don't think the makers of the GI JOE guys would consider a wheelchair user. Too much reality for the buying public. But it could be a serious money maker.. At least they could be gentlemen and come and rescue Becky off the couch.

Fellini, Table for 2

After making the comment about the parking structure at UCSF, this story popped into my head. that means, it is time for another trip down memory lane.

Maggie was little, maybe two, maybe not quite.  Though not positive of the date, I can confirm it was a terrible time for her medically. That was the case for the entire first three years of her life. The morning started at 8:00AM with a potential problem with the shunt in her head.  I cannot recall the symptoms now but I had to make a mad dash up to see the neurosurgeon. That is never good.

As I drove toward the massive parking structure at UCSF, I spotted a car leaving on the street. Impossible! (In the 17 years I have been going there with Maggie I think I have parked on the street about 5 times.) Even though there was a parking meter, we can park all day with the handicapped placard. This spot would save me at least 15 minutes. I snagged it.

I started down the long hall to Neurosurgery. (For those of you who know UCSF, it was in a different location then.) I passed Pediatric Surgery, a different department. Maggie’s surgeon Dr. deLorimier was standing in the hall. He asked what was happening and I told him. He looked grim faced and wished us well. (see earlier post on Dr deLorimier at Maggie World: Big Al)

We spent the day undergoing various tests, a ct scan, a nuclear medicine test, etc. Finally about 8 hours after arriving, they decided Maggie could go home and be monitored there. It was 4:45 PM. As I left, I saw Dr. DeLorimier way down the hall. He was heading up to the hospital to do his rounds. He raised his hands as if to say, “What happened?” I gave him a thumbs up and he clapped.

This is before Maggie had a wheelchair and I carried her everywhere, which was not easy. She was little and light; but she has never had head control, and it took two hands to keep her steady.    We loaded back into the car. Someone saw me leaving and immediately stopped to grab the coveted parking spot. I started the car, fastened my seatbelt, put on the blinker and pulled the emergency brake. 

The handle of the brake release came off in my hand.

For a moment, I thought I pulled the hood release by mistake.  That doubt was erased when I looked at the thing in my hand and it read “BRAKE RELEASE.”  I can still see those words as clear as day.  Sadly, the brake did not actually release when it pulled out and I could not move the car.  The driver awaiting my spot was honking. The traffic was backing up behind him. I showed him the brake release and hanging cable as if to offer some explanation.   

I unloaded Maggie and went back inside to find a phone booth. (You remember those…back in the days before cell phones.) Naturally, at 5:00PM there was a long wait for AAA just to pick up the phone, not to mention the wait time for a truck.   I balanced Maggie on the little area next to the payphone and waited for them to answer. I felt a tap on my shoulder.  I turned around and there was Dr. deLorimier again, returning to his office from his rounds upstairs. He said, “Are you ok.”  I silently handed him the brake release, which was still in my hand. He was very sympathetic.

He said, “Can I DRIVE you someplace?”  I smiled and said “no. I have to deal with this and I need the car. I’m sure it’s just some button to push, but I don’t know where it is." He looked at an obviously exhausted Maggie and a frazzled mom and said, “Are you sure?”  I nodded and gave him a grin. I said, “My life is a Fellini movie.”  He doubled over laughing. He knew I was right.

The tow truck came. I learned how to release the brake with my foot, which I did for about six months until we got around to fixing it. 

Maggie and I went home exhausted. The next day they had to do the surgery. 

Happy Birthday Tim!

Today is Tim's 21st birthday. That is just a little bit mind boggling to me because it seems like yesterday he arrived in our lives. It is fascinating to me that my offspring can be adults while I have not aged. The wonders of Science!

Tim was born on Fathers Day. He was a few days late and I was more than ready to be done with the pregnancy. That morning I gave Steve two Father's Day presents, one from each child, because I assumed we would already have the baby by Fathers Day. As I handed the gifts over to him I said, "if this baby isn't here by midnight, you have to give one of those back". Charming, wasn't I. Tim did not let his father down, he arrived in time for the 10PM news.

When Tim was born something clicked in me. "I thought, OK, this is a FAMILY." I don't know why. Eddie was already two years old and we had been caring for him and doing all family things since he was born. But the arrival of child #2 was the end of the novelty of being a parent and the beginning of honest to God real life parenting. On the way home from the hospital I was completely overwhelmed with this thought. As we drove, we passed my old high school and other landmarks from my childhood. I was thinking - I had a whole life before I even knew Steve and now we have TWO KIDS!. Steve, not knowing what was going on in my head asked why I was so quiet. I looked at him wide eyed and said/shrieked:

"We have two children and I hardly know you."

(There is a slight possibility the hormones were at play there.) That phrase has become a staple in this house. If I ask Steve something mundane, e.g.if he wants mustard on his sandwich, he will sigh and say, "You hardly know me." It still makes both of us laugh.

Tim was a wild man as a baby. His favorite thing to do was to bang his head on the hardwood floor and then give a huge grin when I would rush over to stop him. He was big and brawny from the get go and he and Eddie were a hilarious pair. They still are.

When Maggie arrived, she and Tim formed an instant and lasting bond. He loved to hold her when she was little. I've put this picture up a few times, but it is my favorite.

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If he's here and watching the game or something, he will pull her out of her chair to sit with him. He talks about the strategy of baseball. Maggie is a great listener. If something goes wrong in the game, he tells her, That guy is a BUM and Maggie signs yes.

Maggie adores Tim. She adores Eddie too, but Tim is here and I get to see it more often. When he walk into the room she starts jumping around in her chair, even if he's just been upstairs for 20 minutes. He gives her advice about school and boys. She listens intently and then laughs in his face, as any little sister would. He gets s stern face and points at her and then she laughs so hard she almost stops breathing. By then he's laughing too.

Tim is the middle of the 3 kids and in many ways the anchor for the other two.  He is fiercely loyal to friends and family and absolutely hilarious to be around. He was here last night and left at 11:00 to ring in his birthday at midnight. It was off to a rousing start, but having to be at work at 7AM may have slowed things down a bit. Maybe I have aged a bit, because that is FINE with me.

Here he is in his white sport coat, circa 1962 and painting shorts as he heads out for what I'm sure was his very first beer* on his 21st birthday.

*oh, except for the one in his hand.

Is this my stop?

I was driving down the San Francisco Peninsula the other day and remembered something from long ago that made me laugh so it’s time for another story from the past.

Maggie was 3 and just about to start school for the first time and I was worried about everything.  Sending your child off to school is hard for every mother, but sending you helpless, medically fragile disabled child is something else entirely. She was going to pre-school in San Francisco, but I was looking ahead to kindergarten and beyond with fear.  At that time Maggie’s school program did not exist. The "involved" kids with communication needs like Maggie were sent to the Bridge School in Hillsborough,(near Burlingame on the map) which is about 10 miles south of the city.

San Francisco sits at the north end of a 50 mile long peninsula.  The Silicon Valley and San Jose are  just south of the peninsula, so you can imagine it is a very busy corridor for traffic.  I was taking the kids to visit my friend Kathleen in San Carlos, which is about 10 miles past Hillsborough. The trip to San Carlos should be 30-40 minutes.  I don’t know what happened that evening, but it took us over 90 minutes to get there. It took 45 minutes just to get out of the city. Tim and Maggie were both sound asleep in the back of the car and Eddie and I were in the front seat.

About an hour into this ride, we passed the freeway exit that led to the Bridge School. I said to Eddie, who was 8 or 9 at the time, “This is where Maggie will go to school when she’s 5.”  He looked at me in horror and said, “all the way down here? It takes so long to get here, are you going to have to drive her every day?”  I smiled at him because I appreciated his concern. He sounded just like me. I told him that it usually took about 20 minutes, not an hour and she would take the bus to school.

Eddie had never experienced a school bus because those don’t exist in the Catholic school system. A bus to him was the Muni, the San Francisco city bus system. We often took the bus or the streetcar downtown. It gets you where you are going and there is almost always something or someone outlandish while you’re riding. It’s free entertainment.

Eddie knew how worried I was about all the changes Maggie was facing. I’m sure he could not believe I was so calm about this. He looked at me like I had two heads. “SHE”LL TAKE THE BUS? How will she know where to get off.”

That image still makes me laugh, imagining my 5 year old disabled daughter on a city bus and hoping she recognized her stop and had the physical ability to pull the stop cord. I suddenly realized there were things I did NOT have to worry about.

 Trying not to laugh I just looked at him and said, “Not that kind of bus.”

Note: Maggie never did go to the Bridge school because SF Unified started her wonderful ITALC  program when she  started kindergarten. That's a story for another day.