Finish the Scrubbing because it's time for the BALL

Prom day has arrived and Miss Maggie is beyond excited. She wanted to try on her dress again yesterday but I told her she had to wait . She starts working on her talker and then I hear.

"I dress up tomorrow."

I just had to go in and give her a big kiss after that. Her enthusiasm is infectious. 

The prom fantasy has captured many a young woman. Sometimes the fantasy is realized and the night is magical. Too often, though teenage girls have set their expectations unrealistically high and are extremely disappointed when the actual night roles around. I can say with certainty that will not be a problem for Maggie. There is no boy drama, no competition with the other girls, just unmitigated joy at going to a social outing with her friends. Dressing up is just the icing on the cake. 

Kindness of two friends has added to the magic of the prom week. My friend Kathleen saw the post the other day about the dress not fitting. She want to make certain that Maggie had something to wear and she knew time was of the essence. Without saying a word, she packed up a box of possible accessories and a lacy black skirt which arrived via fedex yesterday.  That was beyond thoughtful. 

And then there's Kelly. Kelly is lawyer who works with Steve. She's only met Maggie once but she always asks about her and sent home a Christmas present for her. That was nothing compared to this week. Kelly brought a package into Steve to give to Maggie. It is a tiara for her to wear to the prom. But not just any tiara, it's the one Kelly wore in her own wedding. 

It is the perfect accessory to her fancy dress. Maggie will look even more like a princess. But Maggie is not good with anything on her head and she tends to fling it off as quickly as she can. We are going to give it a try and will certainly take pictures, but the thought of Maggie hurling that wedding tiara across the room is creating a pit in my stomach.  The gesture was incredibly generous and thoughtful, I'm just not sure Maggie is princess enough to go through with it. Maggie's princess persona may be more like Princess Leia or Elvira, Princess of the Dark than Kate Middleton or Cinderella.

Have a good weekend everyone. Think of Maggie this evening as she is dancing the night away.
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Local Yokels

San Francisco draws people from all over the world.  Most people who live here came here from somewhere else.  Those transplants are always amazed when they meet a native San Franciscan.  But there are quite a few of us around.

  I am a San Francisco native. I live four miles from my parents house where I grew up.   I haven’t gone very far. It doesn’t seem strange to me because I know so many people who are also natives and still live in the area.  One benefit of staying in the same small geographic area is the ability to stay in touch with friends and acquaintances from so many different parts of your life. For some that might be a nightmare, but I love it.  San Francisco is not a very big city and those that stay tend to see each other over and over again.

My friend Lori, who grew up in Los Angeles, is always amazed at the number of people I know . It has become something of a game to see if I will run into somebody I know when we are out. I always do. I can’t help it, I know a lot of people.   

I grew up here. I am one of seven children. I have 31 cousins, 25 of whom also grew up in San Francisco.  I attended Catholic schools where many families were the same size. That is a wide net right there.  It’s not just my old friends I see, but their siblings or friends of my own siblings.   I worked downtown before I went to law school and made friends at that time. I returned from law school and joined the legal community. I have many friends from that part of my life. I married Steve and inherited all his friends from growing up and from college.  I raised my kids here, sending the boys to the same Catholic school system I attended. I met many friends this way. When Maggie was born, I met an entirely new set of people in the world of disabled children and healthcare, several of whom I count as very close friends.  We have lived in this house for 24 years and know many people in the neighborhood as well. Now friends of my sons are out in the working world and I run into them as well.  

There is some overlap in the different groups, but not too much. For the most part the groups are distinct. That is not purposeful, just the way it works out.  Admittedly, most of these folks fall into acquaintance rather than real friend category, but there is almost a guarantee I will run into someone I know.  It used to drive the boys crazy, but now it is happening to them as well.

A lot of those acquaintances really are good friends too. They have stood by and with us since Maggie was born. Some faded away because it was too much to handle, but most have been there throughout asking what they could do to help. I don’t say it often enough, but I am so very grateful to everyone in my life who is willing to provide the support we need. It keeps us going.  

Weeks go by and we don’t get to see any one. Then there are weeks like this one in which  I have spent time with friends from several of these groups.  We laughed with friends from Steve’s high school and college days, my high school, raising the boys and my days of practicing law.  Spending time with each allows me to focus on different parts of my life. I may not have wandered very far, but I certainly have a multi faceted life.

It’s good to remember that .  In the last few years my entire life has been completely focused on Maggie’s care, which it needs to be. It can be very isolating.  But I am never alone. I draw strength and love from all these amazing people in my life.  

Fire one..Fire two

Yesterday there were two heart-stopping moments with my darling teenage girl. I had plans to go out for about two hours. Maggie's two events were just before I went out and right after I came home. I love how she waits for me.

Around dinnertime, I was just getting ready to go meet a friend of mine whose daughter has extensive disabilities as Maggie does. I am very lucky to have a group of parents with whom I can connect. Maggie was in her bed and the nurse was just lowering the side of the bed so that we could catheterize her together before I went out. Maggie’s bed is high. The mattress is just below chest level for me. It is perfect because Maggie can be safe and the caregivers do not have to bend over constantly to tend to her needs. The side of the bed simply folds down like a flap so that it is against the bed when it is down. You have to stand back for just a second to give it room to come down.

I was standing at the head of the bed while the nurse lowered the side. We have done this a million times and it is just automatic. When the side was at about 90 degrees, Maggie moved unexpectedly and rolled right onto the outstretched wooden side. The nurse was holding this with one hand when it suddenly became 65 lbs heavier. I screeched and lurched for Maggie and lifted her right back on to the mattress without incident. Maggie looked surprised and we both looked frightened. Fely, the nurse, remained professional. She never reacted at all. I do not know how she held that thing in place but she did. Crises averted, but it is a good thing there were two people there.

I went to dinner knowing that Steve and Tim would be home a few minutes later. All was well. When I got home, Maggie was wide-awake in her bed throwing pillows and anything else she could find. I talked to her for a while and then sat and talked with Steve.

The nurse was coming in from Maggie’s bathroom and I suddenly heard the nurses alarmed voice calling “SALLY! SALLY! SALLY!” I was in there in one step. Her trach tube was out and sitting on her chest. HOLY MOLEY! This time the nurse was panicking and I was just quickly getting a new one in. We keep a supply of clean trach tubes taped to the head of her bed. The rule of thumb is to keep the correct size tube and one smaller in case there is difficulty getting a new one in. You have to move quickly so that she doesn’t get into respiratory distress. (Note: the ostomy (opening) contracts quickly). Maggie was fine, in fact, she was grinning like a Cheshire cat. She loves to make everyone jump.

We have to change her trach tube every week. There are many times that Maggie has broken the tube because she is constantly pulling on the ties. She even does it in her sleep (see picture - note the knot is on the opposite side from where she is pulling).The flange gives way and we have to jump to change it. I presumed that’s what happened this time, but no. Steve looked at it and said, "it’s not broken, she unknotted it." Apparently, while the nurse was in the bathroom and I was out of the room Maggie was bored and went to work on the ties that hold her trach in place. The trach ties are triple knotted to prevent this, but Maggie is very persistent. She was probably working on that for hours whenever she was alone.

Because of the advances in the world, many (most) trach users have Velcro ties. I laughed at that knowing that would not even present a challenge for Maggie. Now she can get triple knots out. Great. I am going to have to get out my Girl Scout manual and find some new knots.

I am meeting other friends for dinner this evening. I think I will sneak out and sneak back in.

Today's gratitude: I'm thankful for many circles of friends

Catching up...

It has been a crazy busy week around here. Despite graduation, Maggie returned to school to finish out the last two days with her classmates. School is her social center, so she was delighted to go.

That gave me the opportunity to gather all the supplies from this classroom and have them ready for summer school. There are two huge bags of diapers, tubes, food, meds and other supplies. I am just leaving those intact in the back of the van to bring to the summer school site. If I move it I will use something and then have to run around to get her set up at the new place.

I also had the opportunity to get some gifts for the teacher and staff in Maggie's classroom.There is the teacher and the nurse and two aides who I felt must have something from me.There are countless others as well, but I focused on the classroom staff. This is the end of three wonderful years. Of course there is no way to convey the thanks I feel, but I was happy to give something.

In unfortunate news, Tim's days as a kilt wearer are numbered. In fact the number is 1. His last day at the Scottish Import store is tomorrow after only two weeks on the job. Seems the boss man finally read the rules on Wednesday as he was preparing Tim's first check. In addition to the charming kilts, rugby equipment, cashmere sweater and tweed caps sold at this store there is very high end single malt scotch. They have open tastings. Open alcohol presents more stringent rules. Turns out you have to be 21 to work there. Tim will be 19 on Wednesday. To say he is bummed is a gross understatement. So it's back to square one on the job search, but at least this time he has some walking around money.

Tonight Maggie is having her first ever sleepover. Her friends Jordan and Sierra are coming over. At first it was just Jordan, but I decided it would be easier if there were two of them. Once Maggie goes to bed she is hooked up to all sorts of machines and the girls will then have each other to hang out with. I'm not really sure how this will go, but they've been hinting around at this for a while and ...what the heck. They have been good friends to Maggie for a couple of years now. Maggie's limitations don't seem to bother them, so we're going to give it a whirl.

Here they are together on Maggies graduation day. They were the designated "Mobility partners" for Maggie and her classmate Grimaldy who was also graduating. The girls were assigned to push the wheelchairs across the stage and back to their place. At the last minute Griimaldy skipped the ceremony, so Sierra accepted his diploma for him.

We will have a fun evening of music and perhaps another showing of "Paul Blart, Mall Cop."

Yes, I said another. It came from Netflix the other day and we laughed all the way through it.

Don't judge me. That movie is funny.

Who's calling?

I had a baking bee in my bonnet yesterday. Even though it was 85 degrees in San Francisco, I felt the need to bake banana bread and apple cake. It’s autumn, even if it is summer outside. I was up to my elbows in bananas when the phone rang. Naturally. I thought about letting it go to voice mail, Maggie was already home so I knew it wasn’t any emergency involving her. In reality I never do that, every phone call could be that Nigerian lottery I keep hearing about. I wiped off my hands and picked up the phone.

A young girl said simply, “This is Sierra.” I wasn’t sure who that was and for a moment, I thought it was a wrong number. Then it hit me, “Sierra from Maggie’s school?” “Yes, can I talk to her?”

Seems simple enough. One 8th grade girl calling another. Except that is the very first time that has ever happened. No one has ever called Maggie before.

Sierra spends one period a day in Maggie’s classroom. She has some education issues of her own, but she is in every other way a typical 8th grader. She is into clothes and boys and having fun.

The logistics of this were a bit complicated. As you know, Maggie does not speak. Because of the trach tube, she does not make any sound at all. Hence, a phone conversation is a tough thing to pull off. I put the phone to her ear and Sierra started talking. Maggie was laughing her head off, but without the sound, Sierra was not getting any feedback. I told Sierra to hold on and I used the remote phone to listen to what she was saying and held the extension up to Maggie. That defeats the purpose of the teenage girl phone call, having a mom listen in, but we have to adapt. I role-played what Maggie’s responses would be. It was not hard to translate. Maggie was ecstatic.

Sierra asked about Maggie’s weekend and I told her Maggie’s cousin was coming. Since we plan to make tie-dye shirts, we promised to make one for Sierra. There was a pause and she said,
“Maggie, you’re my best friend”

I swallowed hard.

If I were really channeling an 8th grade girl I would probably say something like” Oh, I like Taylor better.” But the role-playing stopped right there. I told her that Maggie thinks Sierra is her best friend too.

The call ended. My heart expanded. Maggie continued to beam.

Sierra ­IS her best friend. Maybe mine too.