Camp Mom

And so Summer vacation begins. When I was a kid, there was nothing better than waking up on that first day of summer vacation. No more school. The days and weeks of summer stretched out luxuriously in front of you.

Now it's my least favorite week of the year. Summer still stretches out, but it doesn't feel luxurious anymore. The only time I have to myself is the time Maggie spends in school. Now I have to be on 24 hours a day. Maggie and I have fun together but it is exhausting to think about all the lifting and physical requirements ahead. It's never as bad as I imagine because we will find a rhythm, but the anticipation is less than delightful. We have 10 days until summer school begins and then a month after it ends.

In addition to the physical demands on me, summertime is hard on Maggie. School is Maggie's social and recreational center as well as her academic center. It's fine that everyone needs a break from the academic rigors of school, but there are zero social or recreational opportunities for Maggie when school is out.  That means old mom becomes social director and camp counselor for a few weeks.

On the plus side, though, Maggie is about the easiest person in the world to entertain. Yesterday we went looking for a new mattress. Every time Steve or I laid down on a mattress to try it out (which was frequent) Maggie laughed so hard she would have trouble breathing. The poor salesman didn't know how to react. We would laugh and jump up and suction her. That made her laugh too. 

So we will begin our summer today. We will go somewhere every morning. Might be the park, or the museum or shopping. It doesn't matter because Maggie will love it. If I get too worn out we can go back to the mattress store and lie down. That will keep her entertained and I can rest. 

If anyone has ideas for outings that we can do in a couple of hours, feel free to share. 

Just Maggie

Every once in a while I get a glimpse of what life with Maggie might have been like if she wasn't who she is. I mean if she was typically developing and healthy. I don't look for these glimpses and I'm always surprised when I get one. They come from nowhere. And they make me both happy and sad at the same time. 

It happens frequently when I see my neighbor Daniella.  She is finishing her junior year in high school, she is on the volleyball team, goes out with boys and drives the family car. She is tall and kind and pretty. She has been my neighbor since she was born just five weeks after Maggie was. Her mom and I were pregnant together. 


Sometimes when I see her hopping into a car with her friends or leaving for school I think. And I wonder. She and Maggie would have grown up together and either have been close friends or simply tolerated each other. Don't get me wrong. Daniella is lovely. she always greets Maggie and is very sweet, but they are not peers. She is living Maggie's other life, the one way back in my imagination that only gets dusted off periodically. 

I had another one of those moments today when I saw Maggie's class project for the end of the year. All the kids did one and I'm not even certain how it was done. But I love this picture, drawing or whatever it is. It looks like a typical kid. There's no trach, no wheelchair, no equipment of any kind. Those things have come to be such a part of Maggie that I don't even see them anymore. But I noticed immediately when they were absent. And it made me both happy and sad at the same time..  .

 

I scanned it the best I could but it wouldn't fit. The frame has descriptive words about Maggie all around it, Sassy, happy, cheerful, shy (?), loves music, etc.  I think I'm going to hang this one in my room.

 

 It's just Maggie - stripped down to her personhood. 

 

She's still cool.

 

Adios, Adieu, Auf wiedersehen

What do Poland, Vietnam, Tennessee and China have in common?

Give up?

These are the destinations of Maggie’s former teachers and nurse. In the last four years one of Maggie’s teachers, or in one case her nurse, have moved out of San Francisco immediately after spending a year with Maggie.  First, it was the elementary school teacher Ms. Nail landing a job in an international school in Poland. Then her nurse Sally moved to Vietnam to teach English. Last year her high school teacher Ms. 

Taylor moved to Tennessee to be closer to family and now Ms. Derkash is leaving for China.  

Could there possibly be a correlation between teaching or caring for Maggie and wanting to get as far away as possible?

 Naaaaa.

Today is the last day of school and that means we have to say good-bye to Tanya Derkash. It will be hard because it has been such a great year.  I knew after a conversation we had in January or February that she was going to leave San Francisco. She did not come out and say it, but it was clear to me.  As I have mentioned before, this is a hard place for young people to make a life because it is so expensive. Of course, I thought I was so clever figuring out that she would return to Colorado where she was raised.

Uhhh, no. Try China.

China. Wow! I admire her adventurous spirit. It is a red-letter day for me if I leave the City and County of San Francisco and the thought of starting a new life in China just makes me tired. However, Tanya can do it. She will be in an international school with other adventurous teachers, which will make things easier for her. In addition, her big smile, big heart and willingness to jump in and try things give her the perfect temperament for this.  

Still, we will miss her here. Maggie adores her and the energy in the classroom was always positive and upbeat.  Tanya stepped in after Ms. Taylor left and the transition was seamless. Tanya has been at Mission high for several years and already knew the kids before she took over the class.  (Hmm. Let’s review. Same job for several years. Teaches Maggie for one year. Leaves for China. Hmmm.)    

Maggie will get another new teacher in the fall and I am sure he or she will be great. Maggie has been blessed with great teachers throughout her school years.  Of course, at the end of the year, we will be prepared to bid the new teacher adieu as he or she heads off to spend a year in Antarctica.  Maggie just seems to have that effect on people.

Good-bye Ms. Derkash and Good luck. It was a great year and we want to hear from you and your students in China.

Maternal Instinct

I just love this picture of my friend Jennifer and her daughter Rae in their (mis)matched shirts. The shirts, the expressions on their respective faces and all of it capture perfectly the mother daughter reality. and especially the reality of a mom and her special needs daughter, which this is. 

This made me laugh out loud. Click on the picture to make it larger. 

The Word is Spreading!

The campaign to end the "R" word has been near and dear to my heart for many years, well before Maggie came into my life. I am glad to see the movement taking off. You will be seeing this public service announcement on tv. Pay attention and Spread the Word!

Maggie' Magical Night

Here are all thepictures from Maggie's prom. this slideshow is from the shutterfly site we made (http://missionprom2011.shutterfly.com). The pictures are in the basic order of the event from the first dress we had to take back to the pooped out prom queen at the end. Family pictures, pictures with the teachers, the principal and the dean and all her friends. My favorite batch is of Maggie and her friend Tyre are trying to reach each other, Neither has great control of their limbs, but they eventually figure it out.

Click here to view these pictures larger

I have to give you all an update about the prom. It was great. Maggie looked beautiful and had a ton of fun. I've been playing with the pictures and will post a link as soon as I get them organized and named. For now, though I want to show you what Maggie looked like as she primped and as she left for the evening. I am also including  a couple of pics of her and me just before we got on the elevator. I never like pictures of the two of us, but I do like these.