New Viewer

I must acknowledge a new guest to my blog. He left a comment so he gets recognized. Thanks Ray. Ray is my brother and a little known fact, believe it or not, is we are twins. Obviously if you see us together you kinda figure it out. Ray is 4 minutes older than me and a little taller, I just happen to be standing on the sidewalk (so I look taller). Clyde is on the left, with the cap on. This photo was from August 2006. We had been scuba diving/spear fishing.

Dann wrote this to me, "Your brother Ray wrote a message in Puk's guestbook!!!
Soooooo kind of him!! He must be very proud of his little niece!" Clyde said, "I know Makenna really likes Ray and his wife Laura, and vise-versa. But I don't know how proud he is...he hasn't bought her a pony or anything that special yet."

Time for Some Nudity!

No mater how well you think you can explain tube feeding, or a button to a lay person they always seem surprised when they see it. "Oh", many will say, "it actually goes right into her stomach?" Or something equally profound. Same with Makenna's feet. Her toes have looked like this since birth. I kept hoping she would grow and the feet would morph into something more normal. So she will probably never be a shoe model. Since this has turned in to anomalies 101 I want to add the uneven shoulders are ever present...scoliosis. A view from her back would show a large muscle/bone mass on her right side and a "skinny" left side. Her legs are uneven too (I tailor all her pants and never get them correct). But yeah, she sits great. She does not get in the sitting position by herself but she used to get herself out of this sitting position. It was never graceful and she won't do it anymore. Enough head bumps? Or more loss of ability to turn and put a hand back to help support/lower herself? She will sit until tired of it and throw a fit now to be allowed to roll. I suspect a lot of it is "learned helplessness" a document I will put on the website in the future. But I take most of the blame for that.

Makenna and Mataya

Sheri is sharing a very fascinating story with the girls. Mataya, like most kids, was very fascinated with Makenna and the Kid Kart. She is the daughter of my niece, Marlo.

Photo's

Saturday, May 10th, my niece graduated from high school. Way to go Sarah!!!
We went to the reception and I got some good photos which I want to share. Makenna made a new friend! Emily was so good with 'Kenna they became fast friends.

This was after they all changed cloths and ran/rode until tired. Of course the kid riding isn't as tired as the rest.

It was also my mom's birthday, Happy Birthday, MOM!! She is always trying to get a good photo of Makenna. She has taken most of the good ones...but statistically the number is still low.

In case you don't believe what I say here is a photo of Makenna saying: "Get that camera out of my face!" She was really happy, laughing and smiling at the crowd and auctioneer then she turned to look at me and held this look til I put the camera down. The look changed so fast I couldn't get a smiling photo. And it changed just as fast when I put the camera down. But I like this photo. I get this look a lot. She doesn't think I am very funny, very often either. Clyde

Happy Mother's Day!!

To all the Pierpont mom's, Undiagnosed mom's and all other Mom's I know: I salute you! But Pierpont Moms, diagnosed or not, especially. ( And doubly so for Makenna's Mom, Sheri! You probably deserve a badge of merit for everything you have dealt with from Makenna and me?)

Every mom deserves a salute. Mine more than most: Mary McVay, I wish you an extra special Mother's Day! I have never offered you thanks, publicly, for how you have stepped up and done all you can for Makenna....Until now. Don't feel like you can't do enough because what you have done is more than any 5 other people combined.

Here is a poem and honor to Mom's I liked. So I suppose no one else will? I had saved another poem for this occasion but the sappy, sugary, center of it melted on my keyboard and I chose this one instead. Clyde

Happy Mother's Day: 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, her latest humor book now available wherever books are sold.

Tired of Waiting

I often get anxious for things to happen. Usually that means I do something to push it along and that always backfires. But I take back what I said about being happy to wait for Makenna's AJGM article since it would include updates on boy 1 and 2 and include a new case on the East Coast of the USA. While I am anxious to read of the newest child I am more anxious to see what is written about 'Kenna. I don't expect to learn anything new...but they may slip and put some things in the article I have never heard before? I am trying not to bother the MMI team. But I also know, "the squeaky wheel gets the grease". Must be time to send some polite inquiries to some people? And I struggle with the polite part in many, many situations. I don't want to offend/alienate this group.


I recently bought a calender, poster and t-shirt from Despair.com. Somehow they cheer me up! The t-shirt has this on it:



















This is the poster I bought. It pretty much explains my presence on the internet. And the fact I still get up and go to work every day. Oh and the whole husband/father aspect of my life. For example: "I DON'T KNOW WHY THE BUTTON IS STILL LEAKING! I have tried everything I know to do", said Clyde.