Clean communication

I know this will come as a shock to many of you, but I am often amazed by my daughter....

On Friday night at the Giants game Maggie put this on her talker. 

If you cannot read it it says "I wash with Dad." I heard it and said "What!?!?!" You want to wash with dad? Is he dirty? Are you?" She slammed her hand down to say NO! and changed the sentence a little bit to say " I want to wash with dad."

She was clearly trying to tell me something and I wasn't getting it. Finally it dawned on me. Maggie was using "wash" because it sounds like "watch" She wanted to watch the game with Dad. She wanted to sit next to Steve for awhile. I asked her if that was right and she signed yes. And if I'm not mistaken there was the 18 year old "DUH, MOM" implied in that yes. 


Steve and I immediately switched places. If she can go to all that trouble to convey what she wants, we are going to give it to her. 

Maggie has done that type of thing before before and it always take me a while to get what she means. I need to listen instead of read it, because all of her language and communication is done by sound. Though they mean very different things, "wash" and "watch" sound very similar.

She does not really have a communication problem at all, I just need to speak her language, just like every other mother of a teenage daughter.

Christmas in April

                                                                          Palm trees in front of AT&T park


On Friday evening, we used our Christmas present from Eddie. He gave the rest of the family tickets to the Giants-Padres game. It was a great gift and he took care to make sure the tickets were in a wheelchair accessible place and  included a parking pass so that Maggie could be part of the fun.  Quite generous and very thoughtful.

There was a slight hitch in the planning when I realized a couple of weeks ago that I  lost the tickets he sent, but with all these new fangled computers and bar scanning, the tickets were easily replaced. Of course I had to come clean with Eddie that I lost his generous gift before I could get the information I needed to get them replaced. That was embarrassing, and I was on the receiving end of a lecture I have delivered many times about being careless with my things. Turning my words back on me was a little bonus for Eddie.  When the new tickets arrived I carefully placed them in a very safe place - this time one I could remember.

Friday was a PERFECT day in San Francisco which was great because the nights can be very cold at the Giants games and I was concerned about Maggie. She was fine, though, and we were off.  Maggie was excited to be in all her Giants gear and hanging with Tim as we prepared to go.

This is how gorgeous things were when we arrived, beautiful views and big smiles.

Maggie did get a bit cold in the 5th and we added the stocking cap to complete her look

Our seats were on the club level which has an indoor area where the food vendors are. She and I went inside for a bit and she had a meltdown. I think it was just sensory overload, the crowds, the cold night air (which was very mild by SF standards), the constant noise punctuated by the cheering, etc. We also had an obnoxious drunk in front of us who ended arguing with the usher for an inning or so before getting ejected from the stadium. That was distracting for us and I'm sure Maggie picked up on that. (We had good laughs at his expense later, though.)  After she recovered from her meltdown, we went back to where our seats were but stayed inside so she could get used to the idea of going back out.

When she saw Steve and Tim sitting there she wanted to join them. (you can see the space for her wheelchair there)

Maggie made it until the 8th inning, which is far longer than I expected. She and I slowly made our way to the car and Steve and Tim watched the end of the game. By the time I got her out of the stadium, fed and loaded into the van we probably only waited 10 minutes.

The Giants lost the game, but it didn't matter, we had a great time. While driving home we decided we have to do an annual family trek to the park. We all go to several games a year, but we don't all go together and we almost never bring Maggie. It's a lot for her, but she had a great time.

Now I just have to get Eddie to pony up a gift like that every year. Better yet, we have to do it when he and Grace can join us.

.

Ch ch ch Changes

I participated in a panel yesterday at UCSF. I do this fairly regularly and I enjoy it. Various groups from UCSF listen to parents of patients, and in yesterday's case to an adult patient as well, while they talk about what works and what doesn't work for families when one is hospitalized. The groups are interested in the feedback because it really is their desire and mission to provide the best care possible.Yesterday's group was the Patient Satisfaction committee, who are even more interested in how to keep Patients satisfied.

As the panel wrapped up  I found out that  tangible change happened as a direct result of my participation in a panel presenting to this group a year ago.  One of the leaders told me that last year I mentioned how difficult it is to leave Maggie's bedside, even to grab a cup of coffee in the morning. She said they instituted the coffee cart on the hospital floors because they had never considered that difficulty until they heard me mention it. That was nice and gratifying.

There was polite applause from the group but that changed to laughter (by most) when I decided to strike while the iron was hot. The second she finished telling me about the change, I said, "Oh, by the way, parents really need to have a glass of wine and cheese around 5PM."

After all, there are documented health benefits and this IS a hospital, right?


Not sure that's going to happen, but you can't blame a girl for trying.

View from the top...

One man’s ceiling is another man’s floor.  You can be looking up or down at something depending on where you stand. And it looks different from both perspectives.

   

Perspective is an ever changing and fascinating concept.  It is not really the same as attitude, but it is related. Perspective is how you see (or hear) something and attitude is what you do with what you see.   I have a very positive attitude, but I still see things through the prism of my life. I generally make the best of what I see because of my attitude, but my view is skewed, just like everybody else.  For example, my first thought of new business might be wheelchair access while others see the paint color, or the window display. It is not positive or negative, it is just seeing things as they fit into our own lives. 

The way we look at something really does change everything. We all get stuck and often defensive of our particular perspective, but sometimes we need to change our perspective to get the full picture. Everyone benefits from an occasional change in perspective. If nothing else, we gain a better understanding and appreciation of our own life.  

I’ve had several opportunities to do that lately and find myself very appreciative of all the things in my life and especially appreciative of Maggie’s abilities.  Yes her abilities, not her disabilities.  Too often, I look at life through Maggie’s limitations. I always make the best of them, but I come at it from a negative perspective.  Lately, for various reasons I find myself  quite amazed and enthralled by all that my daughter has accomplished given her physical limitations. And I have to say, this change in perspective is wonderful.  

This is not to say that there aren’t still difficulties and that her care isn’t taxing and difficult to manage, because it is, and I will likely be back to complaining about that in a day or so, but not today. Today I am proud of my daughter. I am proud of her ability to communicate and tell folks what she wants and thinks. I am proud of her ability to charm people and change their negative first impression to a positive one.  I am envious of her uncanny ability to live in the moment and I am grateful for this run of good health.

Other parents of 18 year old girls are helping their daughters weigh college options and other future opportunities.  There are times that realization makes me incredibly sad because Maggie will get none of that.  Maggie doesn't live in that world. Today is not one of those times.

 Today I see Maggie in  Maggie's World, where she reigns as queen.

And I’m the Queen Mum.

Eddie's Birthday!

My first born is 24 today. I'm not sure how that happened. I could wax poetic about all the things he did as a baby, which seems like five minutes ago. Because he IS 24, I will show some respect and keep those stories to myself.

He is celebrating(?) his birthday on the road. He is somewhere between Las Vegas and Colorado where he is headed for another work event. Not much fun, but that's the downside of getting older. Your birthday is just a regular day. Well, Eddie, I can tell you it is definitely not a regular day to me. (*wipes away motherly tear*). Happy Birthday!

Saturday we drove down to Monterey to see him at the Sea Otter Classic, where he was working over the weekend.  Maggie stayed here with the nurse while Steve and I did a quick nine hour jaunt to take him out to dinner. I brought a birthday cake which Maggie helped me bake.

When Maggie helps in the kitchen she is usually throwing pots out of the drawer or saying over and over again, "mom, I cook."  This time I gave her a task. I told her Eddie's birthday was Tuesday and she needed to say Happy Birthday to him on her dynavox. I wasn't sure if she could do that but when I realized she was starting, I turned on the video on my phone.  It took her a minute but she got it done. Watch.

She never ceases to amaze me. 

We put that on Eddie's facebook first thing, so Maggie could be the first one to wish him a Happy Birthday. I told her that it was three days early, but she didn't care. When Maggie wants something you just do it. Life is so much easier that way. Teenage girl runs the house - not earthshaking news at all. 

We frosted the cake and I tried to get a picture with the cake on Maggie's wheelchair tray, but that cake would have had a giant hand print in it and she would have had an allergic reaction, so we opted to keep in on the counter where both she and the cake were safe.

That cake traveled from here to Monterey, California,  from Monterey to Las Vegas, Nevada and is now en route to Colorado. I do believe it's my first interstate dessert.

Happy Birthday Eduardo!

No school Monday

No school for Maggie today. There were teacher meetings or some such thing. This us the type of day off my mother used to call "janitor got a new broom day." I didn't really really get her sarcasm when I was the one with the day off.

I understand it better now.

Maggie enjoyed a fun filled morning with me. We listened to her music and then went to north beach to get Maggie's haircut. No one enjoys a haircut more than Maggie.

She enjoyed a quick  
feeding and then helped me at Safeway. She loved the pepper display I let her pick one even though nether she nor I touch the things. (she can't, I won't).

We were back here when the nurse arrived. They two of them of them are hanging out while I work.




Perhaps I should get back to that.

Whew!

The busiest weekend in recent memory is drawing to a close. It was go go go.

I laughed 1000 times yesterday at the reunion, seeing some people I have not seen since I graduated from high school back when Calvin Coolidge was president. Ok, maybe not quite that long.  I actually had a bit of laryngitis this morning from trying to talk over or with 500 other women simultaneously.I did take one serious thing away from that reunion. Seeing all those together women is making me rethink my commitment to just let my hair go gray. They all look so fabulous!

Just before the reunion started I received a text from a nurse agreeing to take the Saturday night shift so we could do our quick trip to Monterey and back. If he hadn't taken the shift, I would not have gone because there just would not have been time. The morning was a bit frantic. Every single time we decide to try something, our nursing falls through or some other glitch arises. I was bound and determined to make this work and called and texted every nurse we have for over an hour. Filling an overnight shift  for Saturday night at the last minute is not easy, but Rudy came through and we were off.

Monterey is about two hours from here. Steve picked me up from the reunion and we were there in time to take Eddie to dinner. Steve drove the entire way, which was a good thing because I fell asleep after about 10 minutes in the car and woke up in San Jose. We visited with Eddie and returned home by about midnight so we could greet the night nurse who came to our rescue. Steve drove home too, and again I slept for about half of the ride. This happens every time we take any kind of road trip because I actually relax and BAM! I'm out like a light.  I decided maybe I shouldn't complain about being tired since he did all the work while l snoozed. He slept in today and had a free day of puttering.

This morning I set Maggie up with her talker and the first thing she said was "Mom, I miss you." I was gone for 12 hours and she very sweetly let me know that was really not acceptable to her. I just smiled and said, "I missed you too Mag, but I always come back, don't I?"

The weekend wrapped up with a wonderful afternoon spent with Elizabeth who I was meeting in person for the first time. We are blogging friends, and fellow warriors in this life with disabled teenaged daughters. Maggie told jokes and charmed her and her friend Jody, who I also know. I met Elizabeth through Maggie World (virtual) and I met Jody through Maggie's World (actual). Now Elizabeth can slide into the "actual" slot as well.  Seems like she had been there for years.  We connected like old friends and talked for hours.

I took her to the airport and said goodbye and drove home with a big smile on my face. It was a great ending to a great weekend. I solved the nursing crises, spent time with my husband and son, reunited with old friends and connected with a new one.

Of course it's not really over. Maggie is off school tomorrow for some teacher day or something. That means another day of activity.

Time for another nap.