Friday, February 28, 2014

The sad story

It is hard to relate the story of the day everything changed in our lives. It is painful. There are images burned into my mind that will not go away. I expect they will be with me for some time. It is not the way I want to remember Maggie and I look forward to different images replacing these. But I am going to share it because it is important and because so many of you loved Maggie too. 

Maggie did not suffer. For that I am grateful.

 She was in her bed with her nurse at her side administering medication. Something happened - we will never quite know what. The best guess is that something plugged off her trach causing her to stop breathing. The nurse started screaming for help and I ran downstairs to find her working frantically to help Maggie. I took over, but nothing helped. She was just lying there. The nurse called 911 and got Steve.  I started compressions, but I felt like a chicken flapping my wings. Steve took over on the phone giving me instructions from the dispatcher while we waited (and waited and waited) for the paramedics. It seemed like it took forever, but of course it didn't. They came in and took over. They worked and worked. Steve and I held onto each other and watched in horror. They worked for ever. Finally the head paramedic said, we will work for five more minutes, but then there's nothing more we can do. I wanted to tell them to stop. I knew it was too late. It had been more than 30 minutes. I said it to Steve, but I could not make my mouth say the words to the paramedics. Just when they were ready to stop, they got a pulse.

 I quickly put on some clothes and got into the ambulance with them. Someone helped me into that ambulance and fastened my seatbelt and I sat there for a minute waiting for the driver to get in. I could not see Maggie but I could see the guys working on her in the back. the driver got in and was ready to go but one of the guys in the back said, wait, let me make sure I still have a pulse. I could not believe what was happening. We drove to the hospital with lights and sirens and I was struck by how muffled the sound was in the truck and by how very very long it seemed to be taking to get there. They whisked her into the trauma room and a crowd of medical workers descended on her. Steve arrived within about a minute and we stood out of the way in silence. A nurse came up next to us and said if we need anything at all to ask her. She said her name was Joy. i stared at her but said nothing. Joy. Wow.

Maggie wasn't in the ER for long. We went right upstairs to the PICU, a place we have spent many many days in Maggie's life. I knew the people in there. The doctor covering the ICU was straightforward and kind. After a very short amount of time she looked at us and said simply, "This is a fatal injury." 

The staff in the PICU and in all of the hospital was really amazing. It was our darkest day and they were so helpful and kind. 

Maggie never regained consciousness. Really, she was gone by the time I reached her bedside that morning but she came back briefly so we could say goodbye.  We called the boys. Tim arrived quickly and Eddie made arrangements to fly in from Orange County. It was sad and unbelievable. We all knew what was happening and we faced it together. We said our goodbyes to the heart of our family, the heart of all of our lives.

I feel very honored by and grateful for the amazing outpouring of support and love that my family has received since February 15. I also feel very honored and graateful to have been Maggie's mother and to have shared her amazing life. Maggie's spirit was - and is - so strong we could not contain it. It touched everyone she met, including those who know her only from this blog. The world would be a better place if there were more Maggie''s in it. 


Thursday, February 27, 2014

Up the Proverbial Creek


Now it's been 12 days.I feel like I am still standing there helplessly watching the paramedics but at the same time, it feels like a long ago bad dream.

So many kind folks have inquired how we are doing. The best answer is that we, or at least I, really don't know. There is a leaden feeling to every moment of every day. It is heavy and tiring. Maggie's room is right there filled with sunshine but it feels very dark. The cards we receive lift us up tremendously as we reconfirm how very very lucky we were to have Maggie. We talk about her and laugh and remember her antics with great joy.

I take great solace in the fact that I know Maggie had a great life. Not a great life despite her disabilities, mind you, but a great life. Today, that is enough to keep me moving forward. Whether it will be tomorrow or next week or next month, I cannot say. But for today it is enough.



Probably the best description I have is this.

 I am in a boat on a river with no paddles. I am at the mercy of the river and the current. So far the ride has been relatively smooth; frightening but smooth. The scariest thing is knowing the water is moving and I have no control. I don't know where the rocks are or how far ahead lie the waterfalls. Maybe the current will deliver me safely to shore somewhere down river and maybe I just have to go over the falls - wherever they are and see what awaits me there.


Maggie would have loved the ride. That helps too.

And in keeping with our water theme, here she is wearing her life vest when we had to report for muster on our cruise in 2005. Not sure that vest would have done her much good. 








Tuesday, February 25, 2014

A love letter from Dad

Maggie's service was beutiful. there were hundreds of people there to honor her and support us. It felt wonderful and terrible all at the same time. 

As promised, I am posting the eulogy that Steve gave at Maggie's service. I wish it was taped because the only thing more amazing than the words was the fact that he got up on the altar of beautiful St. Mary's Cathedral and was able to get these words out with love and humor and some heartfelt emotion. I added pictures in an attept to add in some of that.

Maggie's empty chair was just in front of the altar. Steve spoke from a microphone outside the picture, well to the left of where the chair is . 





MAGGIE’S EULOGY

First of all, Sally, Eddie, Tim and I want to thank all of you for the outpouring of love and support we have received, really from the time of Maggie’s birth, and especially during the last week. Dear friends and family have flown in from across the country to be here today. We especially want to thank our families for always being there for us. We’re so sad to lose our little girl, and I can tell you we would be utterly lost without all of you.  We’re truly overwhelmed with gratitude.

Our dear daughter was such a larger than life character, she doesn’t need much of an introduction;  but here goes…

I suppose the best way to start is with that adage “Life is what happens when you’re making other plans.  Twenty years ago, Mary Margaret McDonald burst onto the scene a month early, all 6 pounds, 2 ounces of her.  Up til then, Sally and I thought we had everything pretty much figured out; filling our time with careers and the challenge of raising two crazy little boys.  We quickly learned Maggie had profound medical issues as soon as she came into the world; the parts were all there, but her plumbing and wiring were twisted up and out of whack.  The doctors and nurses swept her up, and the next thing we knew, we faced the daunting prospect of many, many surgeries beginning when she was only one day old.  I’ll never forget when Sally turned to me that first day and said  “Our lives have changed”.

She always was a master of understatement.

We faced a tidal wave of information, diagnoses, and specialists of every stripe.  We visited the UCSF medical library (it’s where they kept the BOOKS--this was before we had that Google thing) and learned a new lexicon—throwing around terms like “tracheoesophogeal fistula” and “the Aqueduct of Sylvius” as though we knew what we were talking about.  It was both a terrifying and exhilarating period.  Every time we faced another challenge, Maggie rose to the task (even though she always seem to take the road less travelled, just to make sure we all stayed on our toes).

Many have said Maggie was a medical miracle, and that is certainly true; but the miracle never would have happened without the absolutely superhuman efforts of so many talented, tireless, and compassionate medical and caregiving professionals, too numerous to mention. ..but I have to name a few.

 It begins with our dear friend and pediatrician, Dr. Eileen Aicardi, a constant presence in Maggie’s life who never faltered in her efforts to help us and our little girl in every way possible, both medically and otherwise (witness the huge tray of cannelloni in our fridge-enough to feed the 49ers).  The day after Maggie’s birth, we were blessed to meet Dr. Alfred “Big Al” De Lorimier, the greatest pediatric surgeon on the planet during his reign at UCSF.  Dr. DeLorimier possessed legendary skills as a surgeon, and equally important, he possessed the extraordinary ability to sit down with us and confidently explain the process and prognosis with patience, respect, and empathy.  And how many surgeons have a winery and vineyard on the side?  He’s probably up in Heaven with Maggie right now, introducing her to her first glass of DeLormier Meritage Red.

And we must give special thanks to Maggie’s nurses, both in the hospital and our wonderful in- home care crew.  Fely, Etoy, Josephine, Lucy, Mary Joy, Margie, Evelyn, we would have lost our marbles without your help.   You know Maggie loved each and every one of you.  And Janice, you were such a wonderful presence in Maggie’s life, escorting her on the bus and looking out for her at school while she got into mischief.  Thanks so much to all of you!

Let’s face it;  Maggie should have bought a better warranty.  She bravely faced so many surgeries and periods of recovery, we sometimes lost hope.  Sally camped out in the NICU and the PICU, even learning some Swahili along the way from Dr. Simpson:  “Haba Na Haba Who Chaza Kebaba”…Bit by bit the cup is filled.  And fill it did, to overflowing, thanks to all these wonderful people helping to draw from the well. 

Maggie trained so many residents and fellows at UCSF, we’ll be here for hours if I try to mention them all.  We did enjoy and appreciate Dr. Wilson’s recollection of meeting Maggie as a young doctor; he noted 1) he had a good deal more hair back then, and   2) he was terrified of Maggie’s mom… Where would she be, where would I be without Sally, who happily took on the role as Maggie’s #1 Advocate?

As Maggie grew, so did her personality.  She may have been small in stature; she may have been quote, unquote “non-verbal”, but this girl always had something to say.  No one brought more energy and enthusiasm to everything she did.  This was particularly true when it came to SCHOOL.  No one was a bigger teacher’s pet than Mary Margaret.  She was lucky enough to be in the first class of kids in the SFUSD to join the ITALC class, where she learned to make those icons fly on her dynavox talker-the device she always sported on her chair so she could be sure to make her point clear.   Like “ Dad, I am BORED with this speech...”


Maggie was blessed with the greatest group of teachers, paras and nurses throughout her school years, and they inspired her with such energy and enthusiasm that she literally could not wait to go to school (JUST like her brothers.)  Maggie saw no reason for holiday breaks or summer vacation.  Where is Nurse Janice?  We have a 4.0 GPA to keep up!  Her parents did their best to provide some holiday entertainment and amusement, but compared to her teachers and peers, they were RATHER BORING. You should know Maggie was secretly lobbying Sacramento to eliminate all school breaks.

 I can’t begin to tell you the amount of joy and enrichment each of you brought to Maggie’s life, and to ours.  You gave Maggie the tools and the confidence to let her truly show us her personality, her humor, and her intelligence. 

Maggie loved to laugh, and she and Tim continually honed their craft as improv and standup comedians.  Nobody loved a sight gag or funny noise more than Mary Margaret!  And really, what is more hilarious than a Tasmanian Devil guy who makes armpit noises, or a Poomba pig who FARTS??? With Emily Nail’s help, Maggie rocked the talent show as their school’s first “Sit down comic”!  She was so excited and proud to go through graduation at Mission.  And there is nothing more fun than going to PROM!  This is where I witnessed firsthand how Maggie and her peers really WERE part of the crew, accepted by all, laughing and dancing to music so loud it literally made my ribcage vibrate.  Everyone knew Maggie loved her music; she had a song in her heart (just like her mom).  Do not even think of changing the radio, dad.  We are listening to All the Single Ladies.  No, we are not going to listen to the news. MOM, I have something to say.  I want to hear MY music, please. 

Maggie was a master of the art of living in the moment.  She didn’t need a Zen garden to help her practice mindfulness (although she was always happy to help distribute rakes, tools pots, pans, dishtowels, whatever she could find in your pocket, purse or drawer.)  She knew what she liked, and what she wanted to do, and didn’t have time for distractions.  Like whatever it was YOU wanted to be doing at that particular moment…
 
This was perhaps one of the greatest gifts she gave us—she taught us how to peel back the drab veneer of daily life and focus on what was really important.  Maggie didn’t care whether you had a bad day at work, where you came from, what kind of car you drove, or whether you had the latest gadget…unless it was a TV.  In case you didn’t know, Maggie does not like TV.  She taught us that life is too short for such nonsense.  Except for maybe when Timmy swept her up in his arms and watched a game with her, providing play by play (Maggie, LOOK at this guy!  He’s a BUM!)  Stories must be read and enjoyed. Beanie Babies must be flung.  Jokes must be told.  Over and Over and Over.   What do you call an Irish Lawn Chair?  PATTY O’FURNITURE!  Mom, we are overdue for a walk to Golden Gate Park. Dad, I want to go to the Museum (the DeYoung-she was a matron of the arts).  Dad, I want to cook.  Mom, I am excited because tomorrow I will go to Mission High School.   And of course, “Mom, I want to go to the Mall”.  
 
Forget about whatever else you were doing;  it is now time to go fast in her chair, for her brothers to make funny noises, take her swimming, introduce her to Flogging Molly and  help her get into mischief; to go for a ride in the car;  to laugh and enjoy the day.

Though we didn’t get to go as often as at least DAD would like, Maggie loved camping; especially when the sleeping bags were spread out in the big 2 room tent, and she could roll from one end to the other with her brothers!  And what is more fun than swinging in uncle Jim’s Hammock at Folsom Lake with cousin Colleen?? While we didn’t get to sleep in our tent, Maggie was so honored to serve as flower girl in Cousin Kelly’s wedding in Montana! 


And let’s not forget Maggie’s favorite Holiday, HALLOWEEN! She wasn’t in it for the candy; she couldn’t even eat it.  Halloween was Maggie’s Christmas.  She started in with her Arsenio arm pumping and big grins as soon as we began talking about a costume in early October.   I guess this gave her yet another chance to show off, party and have fun with her family, neighbors, teachers and friends at school.  Her mother is equally to blame for this phenomenon,  matter of factly announcing that we needed to convert Maggie’s chair to a Race Car (fortunately that chair came equipped with a roll bar),  a Viking ship, a litter for Queen Cleopatra,  an oven,  or how about a horse drawn Covered Wagon, please?  Both Maggie and Sally left it to the R & D department to figure out how the thing was supposed to fit in the elevator and on the bus.  Maggie was positively giddy with excitement as we assembled these get- ups the week before the holiday.  And she had so much fun at school she was usually pooped out and asleep by the time the trick or treating began.   I’m so happy we could share in her joyful celebration.

The demands of Maggie’s care were sometimes daunting, and even exhausting,  but easily worth the effort—her smile, her touch, her hugs, her courage and sense of humor conveyed such a strong message of love and appreciation, we couldn’t wait to come back for more.

Ultimately, I guess that was the most profound lesson Maggie tried to teach us—the power of unconditional love.  Her love drew in an ever widening circle of family and friends everywhere she went, like a giant snowball.   She did more in her short time here to expose the meaning of the joy of living than anyone we ever knew.

It truly takes a Village to account for Maggie’s success, and as I look across this room, I’m reminded once again hers is more like a Metropolis.   She really was a bit spoiled when we get right down to it.  But we are so grateful to her and to all of you that we were allowed along for the ride.

Maggie, we are so sad.  We’re left with such a large hole in our hearts and lives now that you are suddenly gone.  Thank you for the joy, the love and the laughter you shared with us all.
Sally, the boys and I  want to thank everyone who has played a role in Maggie’s success.  We’re so blessed to have met so many wonderful people, and made so many friends because of her.  The brilliant fire of her life burned too quickly to an ember,  But as my son Eddie said, it is now up to us  to each light a torch from that ember, and carry a piece of Maggie’s love and life force in our hearts.


Let’s remember her message to give and accept love, and to  help one another.  Let’s make Maggie Proud.

Maggies' brothers, grandmother and cousins - just from mom's side withher empy chair. 

Monday, February 24, 2014

Thank you

Thank you to everyone who supported us this past terrible week and all through Maggie's amazing life. Many of you have asked and I certainly will post Steve's amazing eulogy.

One other thing. I'm not really sure how this blog will change, but I know I'm not really done sharing her life.

Tuesday, February 18, 2014

Services for Maggie

This is Maggie's official announcement




Mary Margaret (Maggie) McDonald passed away February 15, 2014 after a brief illness. She was surrounded by her family and by the love of so many people throughout Maggie’s World.
Maggie is survived by her parents, Steven and Sally McDonald and her big brothers Edward and Timothy. Her extended family includes her grandmother Carmel Coghlan and her grandfather Edward McDonald and numerous aunts, uncles and cousins.

Maggie was a remarkable young woman in every sense of the word. She lived in the moment and entertained everyone with her smile and laugh and her ability to tell the same jokes over and over and over again. No one laughed harder at those jokes than Maggie.

Maggie was lucky enough to have a wide circle of friends and supporters. People knew her and  went out of their way to say hello to her. She made everyone’s day better every day.  Though Maggie didn’t quite make it to her 20th birthday, she touched more people than those who live five times longer.

The celebrations of Maggie’s extraordinary life include a Vigil Service Thursday February 20 at 7:00 PM at McAvoy and O’Hara at 10th Avenue and Geary Blvd in San Francisco and a Memorial Mass on Friday February 21 at 10:00 AM St. Mary’s Cathedral, Geary and Gough Streets, San Francisco. (wheelchair access from the parking lot)

Please consider wearing some bright colors to reflect Maggie’s joie de vivre.

In lieu of flowers, the family prefers donations to the Family Advisory Council at UCSF Benioff Children’s Hospital so that they can continue to support other families the way they supported us. Maggie received amazing love and care there throughout her life, particularly during this last week when it drew to a close. Checks should be made to UCSF Child Life with FAC or Maggie McDonald in the memo line and mailed to 505 Parnassus Ave., M181, Box 0210 San Francisco, CA 94143 or if you prefer to make it online use the form at the following address. Check the box that say "other" and type in BCH-Family Advisory Counsel. https://makeagift.ucsf.edu/site/SPageServer?pagename=A1_API_GeneralGivingForm&Primary=Benioff%20Children%27s%20Hospital  

Sunday, February 16, 2014

Adjusting to the Dark

A wonderful light has gone out and we are struggling to find our way in the dark. My darling sweet Maggie passed away last night. Remember her and keep the light shining in Maggie World

Mary Margaret McDonald 
March 3, 1994 - February 15, 2014 




Thursday, February 13, 2014

The Illness Olympics

Maggie is home from school again today. I let her go back on Tuesday and Wednesday but in retrospect I probably shouldn't have.  Tuesday wasn't too bad but she was really wiped out on Wednesday. She was not happy that I made her stay home, but considering this is what he looks like at 9:37AM, I'm thinking we made the right choice.


I kept getting calls from the nurse at school yesterday that Maggie's oxygen needs were increasing. She needed the oxygen at a higher level just to stay where she had been on Tuesday. Sometimes that happens. I said I would touch base an hour later and see what was going on. When he called back an hour later she had a complete explanation. It seems the oxygen tank that I filled and sent to school never actually filled. The tank was empty.

This happened to me the other day too. Somehow the tank is not "catching" when I lock it on to the big tank to fill it. I called the company to come out and replace it. They are very responsive and arrived late yesterday afternoon. Of course there is absolutely nothing wrong with the tank, I just did it wrong.

That makes me feel so much better.

 I was going to get Maggie but she was able to use the O2 of another student.  Talk about relying on the kindness of others! I went home to get a spare e tank to trade for the one of his we were using, but they were different sizes.

We've spent the evenings this week falling asleep in front of the television watching the Olympics. It's not that they are boring,  they are not (but a little less ice dancing would be appreciated.) It's just that we are doing our own version of the Olympics here. We are all just wiped out from this bug and from ferrying Maggie to three doctor appointments and chest xrays and blood tests etc. No pneumonia or influenza but she is a sick girl.  I guess this is what you would call a Maggie version of a bad cold. Bad colds are tough on everyone. Maggie versions are scary.

  Hopefully she makes a turn for the better here soon.

Speaking of the Olympics, though, I have to tell you how very touching I find the story of the
Canadian Mogul Skier, Alexandre Bilodeau and his brother Frederic. Frederic has Cerebral Palsy and provides the inspiration and motivation for his now two time Olympic Champion brother.  Their connection is incredible. You don't need to have a kid with cerebral palsy to be touched by this story - but that fact that I do makes it that much sweeter. Watch the link for the sweet story

http://www.nbcolympics.com/video/alex-bilodeau-gets-inspiration-older-brother


And just because it's the Olypics, I get to share one of my favorite pictures of my kids. This was taken during the Nagano Olympics in 1998. They were fascinated with the bobsledding team and watched the competition in full bobsled formation.