Wednesday, August 19, 2015

Back to School week memories

It's the first week of school in San Francisco and many other places. I've been seeing back to school photos all over the internet. Oh how I loved this week when Maggie was here.

Summer vacation was hard because there was just NOTHING for Maggie to do except hang out with her old mom. Don't get me wrong, we had a ton of fun together. But it wasn't like school.  School was her everything -- education, entertainment, recreation and social life. She was back with her friends. We would get everything ready on that first day of school and wait outside for the bus, which was always late on Day 1. When Maggie saw Nurse Janice coming down the street she would get so excited, I thought one or more of her wheel chair straps would bust.

And I'm not going to lie. It was a good day for me too. I posted an annual "Dance of Joy" post when Maggie returned to school and we had some semblance of a schedule again.

This would have been Maggie's last year in the school district and I would have been fretting about transitioning her to an adult program. No need for fretting now.

Just missing my girl this first week of school and every week. I'm happy to remember her so happy. Here she is on the first day of school in 2012 waiting to go down the elevator to get on the bus and and 2013 checking out her new bus driver

You will have to settle for a mental image of me doing the Dance of Joy.

No dance today, just small sad smiles as I remember.

Tuesday, August 11, 2015

Just a chance

Sometimes gratitude is already in the house before you even hear the knock on the door. It comes in through the back door or an open window and settles right in. Sometimes it's there all along and it just waits to be recognized. Periodically I recognize it and have to

We had a great weekend because of some unanticipated free time, which has been sorely lacking the past few months. A friend invited us to spend the night at their vacation place in Santa Cruz and we didn't ask questions, just threw some stuff in the car and headed south along the coast. It was beautiful, fun, and very last minute. On Sunday we picked up the dog from my sister, visited Steve's dad and putzed around the house. We were worn out and relaxed from our mini adventure.

I made a quick dinner and we watched "60 minutes" while we ate in front of the television. It was likely a repeat, but neither of us had seen it before. The first story was about Syria, people trying to get out and people stuck inside on the wrong side of the political powers. It was heart wrenching. People lucky enough to make it across the border were seen putting their children onto trucks for what they knew had to be better circumstances. You are in a terrible predicament when sending your children away to an unknown fate is better than the hell you are experiencing.  And those were the lucky ones. Those who cannot get out of Syria but are not in a favored group are starving to death. My mood and appetite quickly changed.  We watched the footage in silence, feeling guilty for all the excesses we enjoy on a daily basis.

Then the camera focused on a little girl in her dad's arms. I would guess she was 6 or 7, but it is difficult to know. She was so small and so gaunt and weak she looked much younger.  She was just a shell in her dad's arms. The reporter said the footage was from January 2014 and that little girl died of starvation a few weeks later. I had to leave my dinner and walk away from the television.

My first thought: That child died right around the same time Maggie did (2/15/14). Then I thought about these two lives and how very unfair everything is.  I don't know a thing about that beautiful little Syrian girl except that she starved to death. But I am going to assume she was an otherwise healthy child and I can surmise she did nothing to deserve her fate. How could she possibly have done anything? She was just a little girl. She never got a chance. She was born in the wrong place or to parents of the wrong political views or both.

Maggie, who was born with a myriad of physical issues and disabilities got every chance. Maggie, who many people pitied, had a wonderful life. It was a life of challenges, certainly; but if we measure life in smiles and laughter, there was no one richer.  And even those who pitied her didn't do so for long because if they took even a moment to get to know her, she shared her light with everyone.  She elicited as much laughter and as many smiles as she gave. Thinking of her always makes me smile, even when I miss her so terribly.

As troubling as that story was, and the image of that little girl stayed with me causing a sleepless night, it made me appreciate my life and Maggie's a little more than I already do.  If Maggie had been born in Syria - or in any number of other places in the world - she would never have survived. She would never have had a chance to survive and share her light. Instead she was born in a place with a government that cares for its people, with access to world class medical care, into a family that could care for her. All the stars lined up for Maggie to thrive, and thrive she did.

I'm grateful for that, I really am. I only wish she could have thrived longer. If that makes me selfish, so be it.  

I'm not naive. I know there are people who starve here too, and I know there are innocent children lost to all sorts of horrible situations that some would blame on government action or inaction. But we are free to criticize and try to make changes. We have a free press that does that for us all the time. ALL. THE. TIME. And we take it for granted or even complain about it.

I am grateful for the chances we get, even if they don't always work out.  I hope there is a Heaven and that Maggie and that little Syrian girl entered together hand in hand and that they are both happy and at peace.  I wish there could be peace on Earth too, and that little girls everywhere could get just a chance to thrive.

And maybe not have to have such sad stories.

Thursday, July 30, 2015

Special Olympics

The Special Olympics World Games are happening right now in Los Angeles. (check it out here I am seeing so many articles and heart warming stories. They make me happy and of course they make me sad, too.

Maggie participated in Special Olympics through the San Francisco Unified School district. There were a few events every year, but the big spring time track and field event was the best. All of the participating athletes from all over the city would gather at Kezar Stadium and have a day of great events.

Maggie was definitely into it. She would get her "game face" on and have the time of her life.

She also had fun just hanging with her fans, including me and Grandma. 
(Different year, no eye black)

Generally these performances were not on the level of the athletes now participating at the World games, but I bet the SF kids had even more fun. I thank Special Olympics and the San Francisco Unified School District for partnering together to give Maggie and her peers such great days. And for giving me such great memories.

Special Olympics is worthy of your support, financial and otherwise.  If you ever want to feel uplifted, spend a day at a local Special Olympics event or the world games if you are in LA. You will see sport at its most pure and nothing but delight everywhere you turn.

Friday, July 17, 2015

Tribesmen in the O.C.

Tribesmen in the OC. That sounds a bit like a reality show title, doesn't it. This is reality all right, but this could not be scripted.

My son Eddie travels a lot for work. Just this week he has been to Ashland, Oregon, and back to Orange County, to  Copper Mountain Colorado and back to Orange County, to Morgan Hill Ca and here to our house (!) and today to Marin and then back to Orange County. This will continue through the summer at least with Germany, Vegas and other places on the map.

He called the other day to tell me of a great cab driver he had while en route home from the Orange County airport. He said the man was chatty, which Eddie loves. Most cab drivers have very interesting tales to share if they choose to do it. This man was Afghani and wanted to know all about Colorado, from whence Eddie had just returned. He is always interested in safe places to move his family. Eddie told he what he knew of Denver and Boulder, which admittedly wasn't a lot.

Then the man told him he couldn't really move because he has a disabled son who needs his doctors etc. Naturally Eddie asked about the nature of the child's disability and was taken aback when he described a child with cerebral palsy and hydrocephalus who has a trach, and a feeding tube and uses a wheelchair. This describes many of Maggie's issues. The man was surprised when Eddie understood all these terms and asked him how he knew so much about it. Eddie told him he had a sister with the exact same issues, that she had passed away last year and that he missed her every day.

While he's not 100% certain, Eddie was pretty sure the cab driver started to cry. Eddie was also getting choked up, which he said made it difficult to sound normal as he's instructing the man to turn left at the light.  He said it was so weird because this man was a complete stranger and the two of them were so affected by the coincidence. The driver told Eddie his son didn't have a long life expectancy and Eddie told him, don't pay any attention to that. My sister was happy, had a great life and lived longer than anyone predicted and we expected her to live much longer than she did.

As they continued the ride, the driver revealed more and more facts about his son and his family. Even though I don't know him at all, I feel like revealing those here would be a breach of his confidence. Suffice it to say he clearly needed someone to talk to and Eddie was an understanding ear.

The ride from John Wayne airport in Orange County to Eddie's house is at most 15 minutes and that's only if you miss all the lights.  This is a heavy and very personal conversation to have in such a short amount of time.   They arrived at Eddie's house and the driver got out of the cab and shook Eddie's hand for a long time while looking straight at him. Eddie said it was strange to make such a connection with someone when he doesn't even know his name. As Eddie relayed this story to me, I first thought it upset him a bit, but he corrected that misconception. He said it was very odd, but really felt good.

I said it's like meeting a member of your tribe when you are far from home.  You don't have to know each other personally to know you are members of the same exclusive club and understand the life the other is leading.  This particular tribe is very very small, and meeting a fellow tribesman out in the world and actually making that connection is a wonderful gift.

Each of them left that brief exchange with a deep respect for the other, which is rare in any situation, but especially so when the connection is so unusual and profound.


Tuesday, July 14, 2015

Silver linings, no playbook

Everyone thinks they know so much about grief. And everyone does. And no one does. It is an intensely personal thing.  God bless those who haven't suffered a major loss in your life.  It's a difficult thing to avoid and it likely will happen to everyone at some point in their life.  If you are lucky enough to have avoided it thus far, count your blessings. Most people have lost someone we love, but one person's grief is unlike that of anyone else. Every experience is unique. There is no playbook, you just have to figure it out for yourself.

Society tends to recoil from those in grief, perhaps recognizing the need for each person to process things in their own way. It can be lonely at times, but there is grace in the solitude of it all. You can't find a silver lining without the dark clouds.  I've been focusing on the clouds, which is not really my style, but I assure you there are silver linings too.  The kindness of people like you is certainly one of those.

My last post brought all sorts of concern and sympathy from all of you. I didn't know how much I would surprise people with my ongoing sadness. It surprised me a bit too, because I did not realize how revealing it was. I've yammered on so much about all of this I thought everyone already knew. I am touched and thank you for your concern and kindness We are fine. I am fine. Please understand, one can be "fine" and sad at the same time.

I suspect folks assume we have moved on and are getting on with our lives. They would be half right. We are getting on with our lives, but haven't moved on. It's a long slog through grief and I don't see any end in sight.  Sure, it gets "easier" in some ways. The grief is just part of us now and we have learned to live with it, but it's there - always there.

One of the worst things, for me, is hearing about the "stages of grief" as though my specific and personal story can be categorized in some over arching paradigm that is apropos of nothing. I've written this before, but the stages of grief, if they have any merit at all, are 1) not linear; and 2) happen several times an hour or day.  Most importantly, if one goes through those stages in order like a good little lab rat, there is no resolution.  You don't magically feel better because you've accepted reality. Reality bites. And that makes you angry and depressed and sad all over gain. It is a cycle that never ends. Lather, rinse, repeat.  

But it's not all terrible. It really isn't. The secret is that while sometimes the grief is a difficult burden, it is often a great gift too. Though I miss Maggie's physical presence and hi-jinks more than one can imagine, I carry her with me always. I'm happy that she is with me at all, even if just in memory and spirit. Maggie is my constant companion, sitting on my shoulder. She listens to me and guides me.I see the world through her perhaps even more than I did when she was alive. I laugh at things she would have found entertaining and I'm sad that she is not here to enjoy them with me.

 I assure you, her company offers far more comfort than sadness. Once in a while I feel her joie de vivre come shining through. And that is the brightest part of the silver lining.

Thursday, July 9, 2015

Figuring Things Out

There are so many things to figure out when you are a bereaved parent. The biggest things are figuring out where you belong and how to get along in a world when your child is no longer a part of it. When I figure those things out, I will let you know. Don't hold your breath.

The smaller things are how to care for yourself and others while trying to figure out the big things. And they pop up all the time. You will meet new people who know nothing about your past who will ask:  "How many children do you have?"  This is not an unreasonable question. It's quite polite but it's charged with meaning when you are in my situation. How do you answer? Do you share everything or nothing or somewhere in between?  For me, it varies; sometimes I tell people, sometimes I don't. It depends on many factors, who are they, how do I feel, how will this change the conversation (because I guarantee you it always does). You just have to do it in a way that works for the given situation.

Another thing I have learned is that I need a bit of alone time. Maggie is on my mind every minute of every day and I'm fine with that. But it can be difficult to keep up with conversations or activities when I'm with a group of people especially for an extended period of time. I need to just check out for a few minutes and not join every activity or outing and just "be" with my thoughts. I'm not sad - or any sadder than usual - but I need to step back. Generally I don't tell anyone when I'm doing that, it is easy enough to do without announcing it. Sometimes I have to and well meaning, but misdirected folk will push me, insisting it will "do me good." I am not concerned about these people and simply ignore them.  It is a very personal journey and they don't get a say. Self care is just that, self care.

There is some caring for others as well. I also love to talk about Maggie and I realize that is not always easy for everyone else. I am a bit more sensitive to others in this area. I get that others don't know how to react or what they are supposed to say and I have no desire to make things harder for anyone. This is driven from selfishness, not altruism. Seeing someone uncomfortable talking about Maggie makes it harder for me.  But when the conversation turns to her, I will not shy away from it. It's great when others welcome that or bring her up themselves.

And you have to be ready for the curve balls, for the things that just pop up our of nowhere and bring a wave of sadness with them. I had one last week when we ran out of q-tips. Q-tips!  I always had a million of them in Maggie's bathroom becasue we needed them to clean her trach and g-tube sites. I would refill the ones upstairs from the stash I had for Maggie. The nurses would give me lists of things we needed so we never ran out. I would buy two giant costco boxes every couple of months. That stopped and it took all this time, 16 months for my stash to run dry. When it did,  it made me incredibly sad.

Sometimes even the things you prepare for can be the curve ball. This week I took my father in law to the neurologist. She did some basic memory testing asking him, "How many grandchildren do you have?"  Whoa! A variation on a theme. He answered without hesitation: "Seven."  I felt my eyes fill with tears. The neurologist looked at me quizzically and asked if that was correct. I said yes, though one of his grandchildren, my daughter, had recently passed away.  I was proud of my father in law for simply including Maggie without pause and I felt a little sorry for the neurologist who opened up a can of worms with a very standard question.

But mostly I just sat there and missed my girl.
And her q-tips

Wednesday, July 1, 2015

Living Gracefully

My husband heard this on NPR this morning and sent it to me. I have to share it here, because this man uses 7 paragraphs to convey the message I have been trying to get across in the 7 years I have been writing this blog.   

Meet people where they are, not where you think they should be. That is living gracefully

Download audio (MP3) 

Fathers are supposed to be role models to their children. But Dick Heinzelman's son has shown him how to live gracefully.
By Dick Heinzelman
My son Jake was born with significant learning disabilities. A sports enthusiast Jake gamely tried T-ball, pitching machine baseball and grade school basketball with decreasing success. But everyone loved having him on the team because no one showed the joy that Jake showed when he managed to make a play.
Jake spent most of his high school years at a small private school for children with serious learning issues. Approaching his senior year he rebelled and insisted on attending the local high school so he could play sports. He wanted to play football but his cerebral shunt and small size said no way. The coach made Jake an equipment manager and, as something of a team mascot, Jake, running at full speed, led the team onto the field at the start of each game.
Jake also joined the lacrosse team. He loved to run into opposing players, a move that became known as "jakelizing" the opponent. Catching the ball in the stick remained a challenge, however. But again Jake's enthusiasm and desire proved contagious.
I tell you this not to suggest that I, as Jake's father, deserve any credit for Jake's success. I've made too many mistakes when my own frustrations led me to say or do things that I am sure were hurtful to him.
It's not about what I could teach Jake, but about what Jake has taught me. You see, I was one of those achievers growing up, a reasonably talented jock, good grades, class president, good colleges. Without Jake, that is what I would have thought life was about, and that is what I would have expected of my son. Jake saved me from all that.
Jake taught me about grace, the grace that allows me to meet another human being where they are, not where I want them to be. The grace that offers encouragement rather than judgment. The grace that nurtures rather than drives.
We can't have too much grace in this world. I still struggle to live up to the word.  It can be discouraging. But when I do get it right, it's worth all the struggle or, as Jake would say, "it's a home run!"
With a Perspective, I'm Dick Heinzelman.
Dick Heinzelman is a retired hi-tech sales and marketing executive. He lives in Napa.