A different kind of graduation

My middle son Avery has been seeing a physical therapist since he was 6-months-old. Her name is Wendy, and like the Wendy of Peter Pan fame, our Wendy is kind, and wise, and supportive, and has shoulder-length brown hair. She's like Avery's second mother, or at the very least, a favorite aunt.
My other two sons pushed themselves through the developmental stages with very little coaxing from me. My main job was to prevent them from hurting themselves, and then cheer at all they'd accomplished. With Avery, it was different. He taught himself to sit, then stopped, perfectly content with this skill level. I wanted him to do more, but I didn't know where to begin. How do you teach a child to want?
Wendy knew what to do, and she showed me. She'd touch the muscles in Avery's legs, cuing them to act, helping him learn to crawl. Later, when crawling was the norm, it was pulling-to-stand. And more recently, it's been movement--putting one foot in front of the other--walking.
In the spring and summer, we usually do physical therapy at the park, on the blue and red playground equipment. The park is next to the lake, and sometimes we'd walk over to the water's edge and Avery would practice standing and throwing rocks into the water, delighted by the splash. Other times, we'd work in the playground sand, which made Avery's muscles strong. Once, we got caught in a terrific spring thunderstorm, and we rushed to the picnic pavilion to wait out the rain. So many memories, tiny steps, and with each one, Wendy was there.
When I wondered if Avery would ever crawl, Wendy patted my hand gently and gave me the answer I needed--yes. When I felt hopeless, and asked, Will he ever stand? She'd pat my hand gently, yes. Will he ever walk? Again, sure and certain, yes. In her, I placed my faith. In return, she gave me hope.
At the park, Avery walks up the steps, across the flexible bridge, down the slide. He walks over to the steps again, up, hand-over-hand down the ramp, to the other, bigger slide. Happy. Proud. Today feels like being with a friend at a play date, rather than therapy. There's very little work for either Wendy or me to do. Instead, I notice the sunshine, watch the seagulls. Smell the water on the air. The lilacs are blooming, the grass has recently been cut. Before long, it's already time to go.
"I don't know how to tell you this," Wendy begins. "So I'll just say it--Avery doesn't need me now. We can still get together socially, but he doesn't need PT. He needs time to practice what he already knows, which he can do on his own."
I stare at her, stunned. As a new mom to Avery, all I wanted was to be finished with therapies--to reach the point where all the early intervention was over. Now that I've gotten my wish, I regret it. I can't imagine a Thursday morning without her.
I consider pointing out all the things we still have left to do--hopping, skipping, running. I think about pleading our case: Look at me! I'm a klutz! I can't teach Avery by myself! And then I remember Avery's monitor. As a newborn, Avery had Apnea of Prematurity, which meant that he sometimes stopped breathing, and then his heartbeat would stop, too. Avery came home from the NICU attached to a little black box that kept track of his breathing and his heartbeat. It looked like a classic black Coach purse, except that once in a while it would get tangled and send off a single, shrill, piercing alarm.
Over time, I got used to it--I even came to rely on it. In fact, I remember being of the opinion that the monitor was so useful that I wished Avery's twin brother Bennett could have one, too. When our doc told us we didn't need it anymore, I panicked. How would we ever manage without a monitor? I even tried to convince him to let us keep it just a bit longer.
I feel that way again now. How will I ever know what to do?
But, I trust Wendy. If she says it's right, I know it's time. And I trust the work we've done these many months. Avery is strong, and ready. And most of all, I trust Avery. I may not know what lies ahead, but I know that together, we'll find our way.
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Reader Comments (Page 1 of 1)
Michelle Adams 5-31-2007 @ 11:10AM
Totally smiling at the friend at a playdate comment... good therapists become part of the family, huh? We have lots of friends via Matthew and teachers now fall into that group too! :)
Great post! :)
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melodyspins 5-31-2007 @ 12:48PM
Oh Jennifer, your posts always touch home with me. My Wil will have to continue PT lifelong due to CP, but I cried when we had to move and leave our "favorite aunt" PT named Wanda.
And the heart/apnea monitor, I lived those shrill sounds and moments of resuscitation with my Mac.
It's hard to let go of the routines, things and people who provide us so much support and encouragement. But, yes, we will and do find our way.
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Ann Adams 5-31-2007 @ 11:50AM
We weren't sure our Elcie would ever walk unassisted. I remember her first steps without the walker. I stood in my living room with tears running down my face.
We weren't sure she'd be able to read or write or keep up with a regular class.
Now she's 14 and graduating from middle school today.
Yesterday she went with her class to Marine World. I'd forgotten to tell her to stay off the adult rides. She came in last night to tell me she'd ridden a roller coaster and was upside down.
And that she saw the dolphins and one of them splashed her. She saw and did everything.
I'm so glad I forgot to restrict her. The look on her face as she was telling me about her entire day was priceless.
She's gone so far beyond anything we anticipated.
These kids are amazing.
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Vicki Forman 5-31-2007 @ 3:11PM
Yes, lovely. He will guide you. Take his hand. Hop and skip and jump for the both of you and then watch as he leads the way.
When Evan got his super duper walker and started trolling all over the playground, I could not stop the tears from coming: cool, healing tears. Then my heart stopped as I saw him crash into things. Even now, he sometimes falls and I pick him up, resisting the urge to baby my son. He knows what to do and so do you.
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Jen 5-31-2007 @ 3:34PM
I happened to be reading this as Bailey's PT was working with her this morning, so I printed it out and gave it to her. She laughed at the familiarity of it, and recommended this to me:
TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation the day finally arrives. You pack your bags and off you go. The stewardess comes in and says, "Welcome to Holland".
"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
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Tammy and Parker 6-01-2007 @ 11:09AM
What a wonderful post.
BTW, can we borrow Wendy?
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Michelle 6-01-2007 @ 1:28PM
My son turns 3 this summer and was just approved to go into the public school system's early intervention program in the fall. When we were first preparing for his assessment with the school, I said if he was approved I would let him have the summer off from the OT and PT that has controlled our lives since he was 10 mos old. Then, when he was approved, I waffled at the idea, because even though he would lose those therapists on his 3rd birthday, they have been a part of our family for the past 2 years. They were with us when he could finally lift his head, they were with us through numerous surgeries and milestones.
The OT and I spoke yesterday and agreed to stop her services, especially since he will be receiving OT an hour each week in school. We dropped his PT from 1/week to 1/month as I am afraid the CP in his legs will cause him to backtrack too much if he is not at least monitored.
As much as I am happy to not have to plan our lives around his therapy schedule, I am sad and a little frightened that he is losing 2 women he loves and I depend on.
Congratulaions on reaching that point where he no longer needs that service! It's sad, but it is also a wonderful achievement!
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