Yes! We are home.

I know, I know. I’ve been remiss. That and a little busy. Between enjoying Parker’s newfound voice and preparing to move next week I haven’t had time to post and confirm that we are, in fact, home. Parker has not missed a beat. He’s up to his old antics and we are reasonably certain that once he actually starts talking that he will take after the Turpin side of the family and never shut up. I promise to post pictures of his naked neck, just as soon as I find my camera and take some. Stay tuned.

Today is Mother’s Day. In the last year and a half I’ve had the pleasure to meet a lot of amazing mothers. Mothers who endure so much more than I did with Parker and who don’t complain nearly as much as I did. One of those mother’s is Angie, her son Ayden has a very rare form of dwarfism and is in Cincinnati recovering from an LTP that he had on Friday. Ayden is 4 years old. While we were in the hospital the doctors told us how over the last few years they’ve really been pushing the envelope on how long they sedate and ventilate LTP patients. The ventilator can cause airway issues in and of itself and longterm use of sedatives and paralytic drugs don’t come without their consequences either. One day they mentioned that they’ve been able to rapidly wean kids as young as 4 off of the ventilator early and keep them just on pain management drugs. They have to be mature. They have to be willing to lie still and not compromise the graft site. They have to understand what is happening to them and what all those tubes and wires are for. These are not things we could see any of our children handling at the tender age of 4! Today, Angie got a wonderful Mother’s Day present. Ayden has been awake today! When I read this on Ayden’s blog it brought me to tears. Angie went on to talk about how the pictures of Parker during his surgery helped Ayden prepare and understand what was going to happen, they helped him be awake today. You can see Ayden’s blog here: www.aydenava.blogspot.com

Someone posted this on my trach forum. I can only truly relate to parts of the story. But, I now know too many moms who can relate to the whole thing. Happy Mother’s Day to each of them!

Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe
points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close. The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of
devastating news. It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

There’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper
to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, the
well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one-saluting
you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.              
You’re a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go

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2 Responses to “Yes! We are home.”


  1. 1 Tracy May 12, 2008 at 3:52 pm

    Suzanne,

    Hello, I am Ayden’s Aunt Tracy, I just want to first Thank You so much for sharing Parker’s story. This has helped our family in so many ways in preparation for Ayden’s surgery. Your words of encouragement to Angie have been wonderful!!! You are an Amazing parent.

    God Bless You, Parker(trach-free) and your Entire Family!!

    With Much Thanks,

    Tracy

  2. 2 May July 8, 2008 at 10:33 am

    Just a quick suggestion for learning signs… Signing Time. It is almost ridicules how quick Sebastian (and the rest of the family) has picked up on it. He is 2 1/2 and knows over 100 signs so needless to say there are days I wanna duct tape his hands together, lol.

    Good luck and I am still a bit envious of your freewheeling suction machine life… lol :o)


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