Tuesday, January 4, 2011

At Full Tilt

Someone asked me recently how Steve and I feel after 16+years of raising Maggie. My first (and flip) thought was “tired” but I did not answer that way. Instead, I said what I truly believe. We feel like every other parent of a 16 year old. Despite the drama and complexities, parenting Maggie has many similarities to raising any other child. We love her, worry about her and want whatever is best for her. The specifics are different but the general ideas are the same.

Of course, the devil is in the details.

Many parents of 16 year old girls have to worry about academics and getting into the right college, the impact of certain friends, whether she will make the sports team,  is attending her music lessons or, on the darker side drugs, depression and teen pregnancy.  We don’t have to worry about any of those things, good or bad. We worry about oxygen saturation and tubes of all shapes and sizes to meet Maggie’s physical needs and worry about boredom and difficult logistics when it comes to meeting her social and emotional needs.

The common denominator is worry. That is what parents do.   Whenever someone says, “I couldn’t do what you do,” I feel very uneasy.  Of course they could and they would if it was their daughter.  Parents do what they have to do to protect and care for their child. I cannot say that either, though because people don’t want to imagine themselves in our situation. They find it tragic and sad and do not want to think of their own child like this. That makes me uneasy too.

Our life is not tragic and sad. It is simply life.  Trying to fit a nice clean label on it just does not work, and the words “sad” and “tragic” never work. This is Maggie’s life. This is how she was born. She is a fully engaged young woman with a range of things to offer. If anything I wish people would try to appreciate the wonder of our experience and save the labels for the jam jars.  

There are times when our life with Maggie is unbelievably difficult, but there are also raucous celebrations of the simplest achievements. You cannot spend 30 minutes with Maggie and still find anything about her life “sad” because she will have already made you laugh 10 times.

Maggie is living her life at full tilt and we are just along for the ride. In her case  the tilt is much steeper. It’s a tough climb up the steep incline, but it’s a great ride down. 

It’s all in how you look at things. Just move your lens a little bit and what you see won't be so scary.

Photos by Håkan Dahlström.  


  1. I love your upbeat style and the ease with which you navigate the tilts.

    Very cool post -- and inspiring, to say the least --

  2. my daughter Hannah is 16yo and very severely disabled. I joke that at least I can choose what she wears instead of what a "typical" 15yo would and sometimes I am thankful that she isn't "normal" with all the things teenagers go through...

  3. WHAT a GREAT post.
    YOuUhad me at 16 year old and worry.
    LOVE it!!!

  4. wow, everything you said was spot on. I love when I read a blog and just feel like wow, she gets it. Great post- and those pictures are really cool too :)

    (Hi from Blog Gems!)

  5. A wonderful post. I've had lots of people tell me that they couldn't raise a special needs child, I hope they never have to find out that they could. We all can, at full tilt too.


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