Shooting stars

 The first few weeks after Maggie passed away were absolutely crazy. There was the service to plan and attend, visitors by the dozens, cards arriving every day, phone calls etc. I've written many thank you notes and have many more to go. Please know I appreciate whatever you did for us, and eventually I will formally acknowledge that. I find the energy for those only sporadically. The hubbub has tapered off at this point.

Now, it's quiet. Very quiet. 

We still receive cards in the mail, and I have to say I treasure every single one. They are all sitting in a basket in my dining room that is overflowing with cards and love.

 As I drove up the other day I noticed a manila envelope on the front porch. I opened it to find a bound copy of the screenplay to the movie "Jack"  autographed by Robin Williams, who starred in the movie back in 1996.  The screenplay was a gift from my friend Joanne. Though it was very cool, I was initially puzzled by it. "Jack" is the story of a boy with a rare condition that causes his body to age four times faster than it should. He is physically an old man by the time he graduates from high school. Her card indicted that she had marked a couple of passages in the book that made her think of Maggie. When I read them I had to agree and I want to share those with you now. The passages are lovely, but so much cooler in the screenplay format that I am including that as well.


                                            Woodruff (Jack's teacher)
... Did you ever see  shooting star Jack? Oh, it's wonderful. It passes quickly, but when it's here it lights up the whole sky. Most beautiful thing you'd ever see... It's such a beautiful sight that the other stars actually stop and watch it. So spectacular that people wish upon shooting stars. And they're very rare, quite rare. You almost never see them. But I did. I saw one...

His eyes hold on Jack.  Jack's eyes gaze off.

                                                     Jack
        I just want to be a regular star.

                                                 Woodruff
        Jack, you're not regular at all, you're spectacular

Then later in the play Jack, who is physically a 72 yer old man, is giving the valedictory address at his high school graduation.

                                                      Jack
As these final days wear down, we think of times forgotten and we pray for new beginnings. And some of us worry about our future. What am I going to do? Where am I going to be in 10 years?  But I say, let us not worry...

Woodruff stands, proud of his student

                                                      Jack
...Because in the end, none of us have very long on this earth. Life is fleeting. And if you're ever distressed, cast your eyes to the summer sky, when the stars are strung across the velvety night, when a shooting star streaks across the blackness turning night into day, make a wish and think of me.  Make your lives spectacular.
                      (a beat)
I know I did.

Thank you Joanne. This meant more to me than you can know.

Thank you

Thank you to everyone who supported us this past terrible week and all through Maggie's amazing life. Many of you have asked and I certainly will post Steve's amazing eulogy.

One other thing. I'm not really sure how this blog will change, but I know I'm not really done sharing her life.

Maggie's entourage

Maggie's off to school but she is definitely in tired mode. We all are. Whew! What a weekend.

Of course the main focus was the prom and Maggie continues to bask in the glow. I read her all the comments from here, facebook and email and she loved them. I think Maggie's joy is infectious. I suspect every girl is just as excited to get dressed and head out to her prom, but high school girls have to be "cool" and not show it. Maggie does not have to act cool so the pure joy comes through.

Maggie told me to say thank you to a few people. Before I forget again, I have to give credit where credit is due. Maggie's costume designer is Anne Marie Hanley. She is the daughter of a friend of mine and has an excellent eye for fashion. I suspect you will all hear her name in the fashion world in a few years. She gave Maggie the dress and matching wrap knowing how perfect it would be on her, and she was right. .

Of course the dress was a tad too large and I had to rely on my friend Rose to do the alterations. My lack of ability with a needle and thread are legendary. Steve does some mending but the work on the dress was above his pay grade. There is no way to do a fitting on Maggie and the alterations had to be done by guesstimate. Rose guesstimated perfectly and Maggie looked fabulous.

Now we have to ease ourselves back into the reality of Monday morning. It won't be easy.




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Merry Christmas

Christmas greetings from my family to yours.

I hope you have a wonderful Christmas. If you don't celebrate this holiday, I hope you have a wonderful weekend. We are shutting it down here until Monday. 

Thank you for taking the time to catch up on Maggie's World. I feel very lucky to be able to share her amazing life with people. 

A Note of Thanks

We thought it was only right that Maggie should write a thank you note for the kindness shown to her by the lady at Boudin Bakery. I wanted it to be from Maggie, not from me. She's 16 years old and can do this on her own. We don't have the software at home to translate things she says on her talker to print, so I asked her teacher if Maggie could do it at school. She wrote it yesterday and they decorated it with glitter and sent it home today after it dried.

I had to scan the typed message inside the card. There is no question that Maggie wrote it.

I'm delivering it this afternoon.

The Village People

Whew! What a weekend. I am actually glad to see Monday roll around so we can get back to what functions as normal in this house.

The graduation was great. Maggie was the very last one to process in and went right next to where I was sitting. She was very excited. For reasons not entirely clear to me, she was the very first one to get her diploma. Everyone else went alphabetically but I think it was easier to get the wheelchair up onto the stage ahead of time and have her go first. I realized it just before they began calling the names because I could see her feet sticking out from behind the curtain on the stage.

Of course, because Maggie was first, my anticipation and interest waned; and listening to the other 250 names became very long. I realized then how little interaction I had with the school. All my interaction was with Maggie’s classroom, and she was in the same room with the same (wonderful) teacher for all three years. Other than those who worked directly with Maggie I knew the principal and the assistant principal and recognized a speech therapist and one teacher, but that’s it. That is just the way it is. It is a special Day Class within a typical school. That offered Maggie a lot of opportunity to mingle with typical students, but mom kept her distance.

Saturday was the party. There were over 50 people through the house during the course of the afternoon. Maggie was in her glory. There were grandparents, aunts, uncles, cousins, current and former teachers, aides, friends. All of these people, along with others who did not attend contributed to making Maggie the success story she is today. I told two of them that if it truly takes a village to raise a child, they were her village.

Raising any child requires input from many sources. Many parents will not admit it, but they take cues from grandparents, friends, teachers, etc on how to be a good parent. These cues are absorbed into and become part of their parenting style. It’s subtle, but it’s there. With a special needs child that is magnified a thousand fold. I did not know what to do or how to do it. I had to learn medical procedures, and ways to teach as well as learn from Maggie. There is very little peer pressure to raise your severely disabled child a certain way because no one is competing. In fact, most people would prefer not to know anything about it. Hence, as a parent you find the ones who know and gratefully gobble up whatever they have to offer. Eventually you find you feet and pick and choose the advice and suggestions. Nevertheless, as a parent you know that there were people who showed you the way. There is no subtlety involved.

I want to say a big thank you to everyone who helped Maggie get where she is today. There are doctors, nurses, teachers, therapists, friends and family. All of you contributed in huge, meaningful ways and Maggie and all of us appreciate it more than you know. You are the village elders.