Sunday, August 24, 2014

Earthquakes and Ireland

Traveling has not been part of our life for many years.

We did a little when Maggie was young and easily transportable. She didn't have a trach yet and she was light as a feather.  In 1998, 16 years ago, we took two trips. We went to Philadelphia and Washington DC in the spring and in the summer of that year she was the flower girl in her cousin Kelly's wedding in Montana.

 The year before that Maggie and I also took an incredible trip to Lourdes France with the Knights of Malta when she was three. Steve  and the boys stayed home. That trip had about 50 doctors and nurses so we felt pretty safe. As her care became more complicated all of that stopped. Even our annual week at Lake Almanor came to an end. That was fine, because that's what we had to do.

Steve and I never got away together until two years ago when we went to New York for four glorious days. It took me months to get the approval for additional nursing time, staff the nurses and create a safety net in case someone couldn't show up. Maybe three months of arranging logistics for four days off. Almost not worth it. Almost.

In January of this year - a month before we lost Maggie - Steve said, "Let's go to Ireland." I smiled and said great idea but inside I knew it would never happen. There was no way I could make the arrangements for a longer trip and I would not be comfortable being out of the country and unable to get back to her easily in an emergency.

Then February happened and Maggie was gone. The logistics that ran my life were suddenly not an issue. We were floundering and sad and needed something to look forward to, so I reminded Steve about his desire to go to Ireland and we decided to do it. Since then the only bright spot has been the  mystical trip in our future. It was so far off, we thought it would never get here.

But that day has arrived. Tim will stay in the house and take care of things at this end. We leave this afternoon and have a fantastic trip planned.  And while I am excited and nervous, and even painted my toenails bright green, I find myself a bit conflicted, guilty and a little melancholy. I would give anything to be complaining that I am stuck here and cannot travel, but that's not true anymore. It's confusing.

Then this morning there was a major earthquake that woke me at 3:20 AM and I never went back to sleep. I figured that was a sign: Steve and I are taking our first ever international trip together and the earth moved. Selfishly, my first thought was "God, I hope the airport stays open." That told me I really was psychologically and emotionally ready to go.

I grabbed one of Maggie's scarves and put it in my bag; in fact I picked a green one so I can bring my little leprechaun with me.

I will check in from the Emerald Isle. 

My thoughts and prayers are with those in Napa and Vallejo and other areas who were injured and/or suffered property damage in this earthquake.

Tuesday, August 19, 2014

I am not a crook

I thought I had already shared this story, but evidently I didn't

Last May we planted some roses in the Mission High garden in memory of Maggie. It was a really great day and all the special ed kids joined in to help however they could or cheer us on if they couldn't. I wrote all about it in this post: Maggie World: Maggie's Garden at Mission High.

We finished about 1:30PM so the kids could get back to their classrooms and get ready to head home. It was quite an emotionally draining day, but exhilarating at the same time. When it was done, we were all spent. My mom went straight home and Steve had to take off for a meeting out of town. That left Eddie and I to make our way home together. (Tim could not get off work.)

As we headed home Eddie said, "You know mom, I could really use a beer." We stopped in the Inner Sunset and went into the Mucky Duck, a friendly establishment and ordered our beer. I had never been in there before, but I looked around and realized I knew the owners of the place. Well I don't "know" them, but one of them has been reading this blog since it started (six years ago this week.)  I asked the bartender if the owner was named  Baker and she said, "Yes how do you know them?"  I explained that I didn't really, but I knew Amanda was a faithful reader of my blog.

Of course then the bartender asked what the blog was about and I told her and tried to explain Maggie in the most upbeat possible way, becasuse that's how I always present her. I told her about Maggie's life, and her passing and that we had just come from planting the roses, hence the reason for an afternoon beer. Now I know that bartenders are good at listening to people's troubles, but this was a lot to lay on this woman.

I ratcheted up my description of Maggie's energy and giant personality. I explained it took seven straps to keep her in the wheelchair and I tried to imagine that life force if it weren't in a disabled body. Laughing I said, "if Maggie had the same personality in a healthy body, I cannot imagine what she would be doing now."

Eddie, who had been quiet through all this because he was still processing the emotions of the day finally spoke.  He was sitting to my left, but he stared straight ahead and said;

"She would be in jail."

Spoken like a true big brother. I was dumbstruck for a minute and I looked at him. He was still staring straight ahead sort of expressionless. I started to laugh and then nodded and said, "You are absolutely right. She would definitely be in jail."

And I was filled with pride, for reasons I cannot fully explain. I actually never thought of Maggie as a non disabled individual becasue it was so much a part of her. But trying to imagine her wildness and personality in a typical body spelled real trouble. Please understand if I had a perfectly healthy 20 year old daughter who was headed to jail, I would not be proud at all. But thinking of Maggie wreaking havoc on society was sort of fitting.

We toasted to our lost little criminal and ended the day on an upbeat.

(one of Maggie's favorite books)

If you find yourself in the 9th and Irving area, head into the Mucky Duck and toast Maggie.

Monday, August 18, 2014

Just Monday

It's the first day of school in San Francisco. I used to wait and wait for this day. Maggie and I would wait in the driveway with bags and bags of supplies - and I am not referring to binder paper. Maggie would start jumping for joy when Nurse Janice came walking toward us from wherever she parked. Then we would cheer when the bus pulled up and we would wait to see if we knew the bus driver and cheer if we did. (By the last few years we generally knew them all.) Maggie would get so so so excited as she rode the lift onto the bus and again when she saw the other students.  I would wave goodbye and start my Dance of Joy as soon as the bus pulled around the corner and continue it all day. It was a win win. Everybody was happy.

This year it's just Monday.

Friday, August 15, 2014

Six months

Today is exactly 6 months since Maggie passed away.
and everything changed forever.

I think I miss her more now than ever.
Tomorrow will likely be more still.

We go on.
We exist.
We continue to float down the river.
But we are so very sad.

Still it's hard not to laugh when I think about her.

Maggie was a force of nature that blew threw our lives. Now she's gone and we are left to rebuild and start again. We will, but right now I'm still surveying the damage and picking up the bricks. I'm smiling as I do so, though, becasue she was such a wild child.

Wednesday, August 13, 2014

I'll think about that tomorrow.

It is six months since we lost Maggie. It sees like yesterday and it seems like forever. We have been floating along trying to keep our heads above water. This takes a lot of effort and many other things in the business of life have necessarily taken a back seat. There are some major decisions to be made, and I for one am purposefully not making them yet. Yes, our way of handling these major decisions has been to deliberately delay them.

Right after Maggie passed away, we decided to take a trip. We really couldn't travel with Maggie and taking even a couple of days required extraordinary effort to get all Maggie's care and supplies in place. An extended trip was out of the question.  Now it isn't and we are going to Ireland. 
Obviously the trip is exciting and looking forward to it and planning it has been a great distraction. We've had the airline tickets for months and with the help of our friend Colm, we have a great itinerary planned. The trip has been more than that, though. It has been a distant point in the future after which we will make decisions.  

The mantra in this house has been, "We'll decide when we return from Ireland."  This is our own version of Scarlet O'Hara saying "I won't think about that today, I'll think about that tomorrow."
Unlike Scarlet and Rhett, however, Steve and I live in the real world and decisions can't be put off forever. 

The trip to Ireland looms and my excitement is tempered somewhat by the realization that Going on the trip means we are closer to returning from the trip and making decisions. I finally said to Steve, we need to realize that the universe isn't just going to open up and provide answers for us the moment we get back in the USA. Perhaps that's just another delay tactic. 

One such decision is what to do with myself. I worked 24/7 taking care of or managing Maggie's care for nearly 20 years. Not having that constant responsibility takes a lot of getting used to.  I'm not used to it yet, and probably never will be, but I have to fill up my days in a way that make sense to me and maybe does a little good in the world; and for the first time in a long time, I want to get paid to do it. I need a job that will interest me, and allow me to use my talents and the knowledge I gained being part of Maggie's World. I think about it, I have some ideas. I talk to people about it, but I am waiting to move forward That is a huge decision at any time, but particularly after/during such an emotionally wrenching time. I'll figure it out when we return from Ireland. 

There are other major decisions as well. I sold the van and haven't replaced it yet. I don't drive that much and have been borrowing my father in laws car when I need one. Getting a car and the type will depend on what I decide to do. I've considered just going without and using Uber around town, but I don't think I'm quite cool enough for that; and I don't want to be the one someone always has to come and pick up. There are days Steve doesn't need his car, but we never know when. We really need 1.5 cars, not 2; but it's hard to find the .5 vehicles these days. Maybe they sell them in Ireland. 

And, of course, there's the matter of this house being dogless. Should we get another dog? What kind? An Irish wolfhound?  All of these decisions are interrelated in some ways. Should we get a dog if I'm going to be working outside of the house full time? Will my working require a car? should we get a car that works with a dog? etc. Will the dog fit in a .5 vehicle?

I'm sure all of these things will fall into place in their own way; but we both want to stop floating and start grabbing ahold of life again.  There is still a little time left to enjoy the delay and we have to not worry about these things so we can enjoy the trip.

So, channelling Miss Scarlett, I won't think about it today, I'll think about it tomorrow. 

Tuesday, August 12, 2014

Maggie knows funny

As soon as I hear someone passes away I think of them meeting Maggie in the great beyond. I've done it with extended family members, parents of friends and even Brisco, our dog who left us a few weeks ago. Yesterday's shocking news about Robin Williams was tempered somewhat by the thought of Maggie and Robin Williams making a connection. Maggie knew funny, that's for sure, and Robin Williams was a funny funny man. I'm sure he made her laugh uproariously.

I miss that joyful laugh.

Maggie also loved to make people laugh and I'm sure she's doing that for him.  I'll bet she gave him some new material he's trying out right now. And Maggie is laughing harder than anyone because she knows funny and she thought she was hilarious.

She was right.

It's a very sad thing when someone ends their own life. And when that someone is as famous, funny, talented and seemingly happy Robin Williams, it's even harder.

 If you are depressed, get help. Find some joy, however small and grab onto it and don't let go. Everyone should have some joy in their lives - even if it's only great memories.

Maggie was joy personified and I got to be her mother. Remembering her keeps her with me and keeps that joy alive.

Find some joy.

Friday, August 8, 2014

Ac-CEN-tu-ate the positive

OK, I just re-read my last two entries and I say enough of the somber. Of course I miss Maggie and I will for the rest of my life, but even when the sadness overflows as it has been lately, I remain filled with great memories of an amazing young woman.

And her memory lives on! A few weeks ago I shared the "Remembering Maggie McDonald" team page for the UCSF Hardhat walk on September 6. Lots of folks have signed up to walk with us or just to donate in Maggie's memory. That means so much to us!

I have ordered these hats for anyone on Maggie's team who shows up to the walk and will adorn them with Maggie's picture (if I actually get that together).

If anyone wants to jump into the fun, here is the link  Maggie's hardhat walk team. Please feel free to join in. I can always order more hats. (they're plastic, so don't start planning your construction career around them)

In addition to the hard hat walk, so many people made donations after Maggie passed away that she is now on the list of donors who support the Family Resource Room at UCSF Benioff Children's Hospital. This room is for families of hospitalized children and they can just sit and have a cup of coffee, or use computers, fax and phone or get things they need that they may have forgotten from home. It was a great comfort to me throughout Maggie's hundreds of hospitalizations  The little plaque was just installed the other day and it made me cry just a little bit - in a good way - when I saw it. 

And just as I was finishing this post, I received a message from a former neighbor who reads this blog all the time. Seems her nine yer old daughter is ready for her first foray into the mall and wants to go to Stonestown, just like Maggie did. I'm not really sure Maggie can take credit for a young lady wanting to hit the mall, because it seems to be a developmental milestone, but I know Maggie was instrumental in that particular girl's choice, and that makes me happy. 

So despite my ongoing sadness, which will always be there, I have so many reasons to smile knowing Maggie is still working her magic and improving people's lives. 

She was something else. 

Wednesday, August 6, 2014

Bad dreams of good memories

When Maggie was small she spent a lot of time on the floor. She loved to get out of her chair and to wiggle around on the floor. She moved so much and she eventually figured out how to get to a specific thing that piqued her interest. It might take her 15 minutes to propel herself to the other end of the carpet, but she didn't care. Maggie was persistent in her attempts and was extremely joyful when she reached her goal - which was more often than not my open purse or a briefcase or something. She flung the contents every which way.

Maggie was never alone for more than about 30 seconds. There were too many dangers for her, even before she got the trach. She could flip over to her stomach and not be able to flip back causing breathing issues, she could get stuck against some furniture and be unable to move, she could catch her gastrostomy tube and she tried to move about. (whenever she caught the tube she made a specific face - kind of a combination of surprise and grimace. The boys quickly named that her "tube face." When they were little if they were watching her, I would hear "Hey mom, tube face" and I would know to come running to reposition her.)

Last night I had a vivid dream about those days. Maggie was out of her chair and moving about. I stepped out of the room for a minute and when I returned she wasn't there. I looked under the couch and under all the chairs and could not find her. Panic was rising even in my dream - I was getting increasingly frantic as I looked all around the room for her. Of course the room was full of strangers in my dream but no one could tell me where she had gone. I was insistent that she could not have gone far because it took her so long to get anywhere and I was gone less than a minute. No one could answer. Her chair was sitting there empty and I was freaking out. Slowly it dawned on me in my dream that she was gone. Somehow I had forgotten that she was gone and I was looking and looking for her. Panic was replaced by immense sadness.

Then I woke up.

note to my subconscious: Cut it out. Losing her was the hardest thing ever imaginable. I don't need to do it over and over again.

Friday, August 1, 2014

A message hits home

So may people have said such kind things to us over the past 5 months. It is wonderful to have the support of so many people. Believe me, it helps a lot. I appreciate all of the kindnesses and have saved every card and note we have received. Every once in a while someone says something that just takes my breath away. This excerpt from an email that Steve received from a friend is one of those things.

     We have had you and your wife in out thoughts and in out hearts for these past 
     many months since we heard about Maggie. What a great, great kid, and what 
     a fighter. I know she brought light to your lives - I saw it firsthand. Everyone 
     who knew her lived richer lives because of her.

Those three sentences say everything I've ever tried to convey in this blog.