Daniella

A couple of Saturdays ago I was mindlessly folding a mountain of laundry and looking out the front window. I could see a knot of very well dressed teenagers taking pictures and getting ready to pile into a car. It was my neighbor Daniella and her friends taking off for the prom. They all looked fabulous and excited and were ready for a big night. I smiled as I watched them. How could I not. No matter what heartbreak or disappointment you remember from your own experience, the prom remains one of the key rites of passage for American teenagers.

I stopped mid fold because I realized I was smiling and thoroughly enjoyed the moment. It used to be that watching Daniella do anything broke my heart just a little bit. I didn't feel that this time and that made me happy.

Daniella has been my neighbor her entire life. she was born about 6 weeks after Maggie and was typical in every way. That's what was so hard. She started to walk, and Maggie didn't. She talked, and Maggie didn't. She had her girlfriends over, and Maggie didn't. I watched her hit and surpass milestone after milestone that Maggie never met and it hurt every time for a very long time.

At some point it stopped hurting. When kids are little it's hard not to compare, but as they grow into their own people comparisons generally stop. Maggie and Daniella were completely different from the start, it just took me a while to come to grips with that reality.

Don't get me wrong. Daniella is very sweet to Maggie and to all of us, but she and Maggie are not friends or peers in any way. The only thing they have in common is their age and the street on which they live. They have lead completely different lives, attended different schools, have different abilities and different everything.

Perhaps if things had been different, they would have been close friends. Maybe they would have covered for each other as they did whatever it is teenage girls do in secret. But that was not to be. I think I mourned that for a long time. Maggie never got the chance to be "normal" and have the normal kid experiences. Watching Daniella enjoy - or even protest - those experiences was a constant reminder of that.

Saturday Daniella graduates from high school and this Fall I will watch her leave for college. (To be honest, the college thing might hurt a little.)  She is poised and beautiful. She is ready to fly and I am happy for her.

 But a couple of Saturdays ago as I watched her and her friends leave for their prom, the first thought that crossed my mind was this: Daniella is wearing the same color dress Maggie wore to her prom. Instead of watching her experience something Maggie would not, I was making a connection to a similar experience of Maggie's. Now Maggie and Daniella have their age, the street on which they live and the color of their prom dresses in common.

And that made me smile.

Step Away from the Edge, Ma'am

I talked to Maggie’s teacher yesterday about this and that. In the course of the conversation, he told me that Maggie was being measured for her cap and gown for graduation. She’s the only 8th grader in her class, so she’s the only one from that room graduating. I will receive information about options for ordering. Will it be cap and gown or just gown? If cap, do we want it with or without tassle, etc.

I told him that the cap would be a complete waste of money for her because it will never work with the headrest on her wheelchair and, in any event, Maggie will be tossing that cap long before they ever walk (or roll) down the aisle. But I still want it to get pictures. Joe reminded me that he and his staff do have a bit of experience with kids in wheelchairs who don’t like to wear hats. Right, I said, and then there’s Maggie. We both laughed. [She flings things far across the room.]

This conversation took place while I was parking to go to an appointment. I hung up the phone and walked down the street toward my destination. I felt a smile growing across my face and had to stop and let the whole feeling wash over me. Maggie is graduating and heading to high school. Wow!

Milestones are exciting for every parent, in fact, probably more exciting than they are for the kids. But milestones for Maggie pack an especially sweet punch. She has been through so much. A lot of her life has been on the edge of the precipice. But we have pulled back from that edge lately. She is stable and healthy.

And I don’t think I appreciated that fully until that moment on the street all by myself.
The maintenance of her health is non stop and all encompassing. Her care requires 24 hour vigilance. But we are doing it, she is thriving. And that is precisely why we do it.

Mark your calendars. There will be a graduation party.