Sunday, June 1, 2008

Saturday, May 31st, 2008

Sarah came to play with me today from noon-6, allowing my parents to get some prep done for leaving tomorrow. Daddy got a hair cut and some new shirts and the oil had to get changed on the car. My parents also got me some sleep and play one piece outfits to wear in the hospital - since hospitals tend to lose clothes sometimes.

So as not to have to do it tomorrow night in the hotel, my parents changed my trach tonight instead and then sent me off to bed while they started doing some packing. There will be more packing tomorrow for eveyone - including my brothers. Tonight they are just hoping for a good night's sleep with no whining or crying from my brothers.

Mommy found this and thought you might like to read it:

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 clich├ęs 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-salutingyou, 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

Peyton Nicole Smith


  1. Peyton,
    I don't know where or how your mom
    finds the time to come up with a passage so tender and thought provoking(I think God's hand is involved in directing her at times).It is humbling as a parent to feel so lacking of being able to do everything for our child.After all we know how you best like to be held,your favorite toys, how to make you laugh. and how to best comfort you when your having a bad day.With all the love we have as parents we don't know how to fix your particular needs,
    so your mommy and daddy found a docter in whom they placed their confidence and trust.And because your mommy and daddy are so smart and love you so much, they have found the best doctor for you.
    This is a big day for your family as you prepare to leave for surgery.Know that all your family is praying for all of you to be strong.We are all looking forward to the day when you and your cousins are running all over the place and getting into everything(well maybe your Aunt Kristin isn't).
    All our love sweet baby,
    Granpa and Granma Mower

  2. Peyton,
    I know you will do well with your surgery. I am holding you and your mom and dad in my heart and saying prayers for a successful surgery and speedy recovery. I can hardly wait to play with you at the end of June. Thank you Tracey for that beautiful writing on Moms. I will be passing it on to everyone I know. I am blessed to know you and your amazing girl.

  3. Thoughts and well wishes to all of you today and all next week!