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On Quinnlin

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We hold Quinn close to our breast

We watch her close up and far away

Like the cool mornings of an autumn which goes on and on and on

Her spirit revives us each time we see her

Like the crystal blue sky of an autumn day in December

Her eyes capture our attention

Like the thousands of stars above us on an autumn night in December

Her influence on her world is great

Prayers from Alpharetta, from Tennessee, from New York, from Florida and from “God knows where”

Like the certain coming of winter

The medical books tell us there will be bitter cold days ahead

Seeing the pansies frozen and shriveled

We fear her life may pass too quickly

Medicine which stops working, dialysis and transplant

We simply say the words and chills run through us

To think of her fate on this autumn night in December

Is to bring on winter with its cold dark rainy days

But then there is the promise of springtime

The hope for a warmer day to come

The beauty of God’s work in re-creation

The miracles of modern science

The miracles of faith and love

We hold Quinn close to our breast…

Written by Steve, father to Glori and Geren,  husband to Cheryl, Quinn’s kidney donor, friend, minister, when Quinn was three months old.

Quinn’s Community

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Quinnlin and Gage attend a fantastic (public) school. I’ve talk in the past about how they have supported the kid’s special needs including medical along with the educational. My kids have an abundance of needs in both areas, as you might imagine.

This flows down from the administration to the PTA. They support families in needs and kids in need. And they were delighted to support Quinn throughout her transplant and recovery.

Her class (Gage had the same teacher that Quinnlin has, which is no coincidence) had a pre-transplant send off party that included the opportunity for me to come in and read a book about kidney transplants and gave the kids in her class a chance to ask questions. Which they did with much enthusiasm.

The entire school was asked to wear Quinnlin’s favorite color. They painted messages of encouragement on the windows that welcomed her the last day she attended before her transplant. They said they loved her. Wished her good luck. High-fived her down the hall.

Many of the teachers encouraged the kids in the classes to write notes and draw pictures. She has over 200 well-wishes from kids and adults from the school. Each week during her recovery she received a bag of little gifts and games and more letters of Miss You and Love You and Come Back to Us Soon and We Hope Your New Kidney Works Great!

Monday morning Quinn was welcomed by a fence sign and the marquee with her name. Her class wore green and allowed Ginger, Quinn’s child life specialist to come speak to the class about helping Quinn stay healthy with the class’s help with hygiene. When she entered the class on Monday morning, she entered to hugs and screeching sounds of delighted 2nd graders.

We’re not the only ones who benefit from the atmosphere of acceptance. The kids get the benefit of learning how to support someone in need on a very basic, beautiful level that can’t be taught in a textbook. I’m proud to witness it and I hope that the lesson is far-reaching into the future.

But the thing is, for me, that it’s special to witness her community. Not the community that I’ve built to support our family through our journey but her support system.

It is indescribable how I feel about watching my daughter be accepted. Administration and teachers have set the tone of acceptance. And support and understanding. And Quinnlin felt all of it. She knew her friends and her school wanted her back and she felt happy about returning. She felt loved. Outside of her inner circle of family.

The spirit of community is alive in well and our family and most especially my children are direct recipients of kindness.

Because I am crazy.

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I’ll be posting every day this month. I have no idea if I’m going to have a theme like I’ve done in the past, but for sure I will have you guys ask questions that I can answer. Because I might get tired of writing about behavior plans and kidney function (you think?).

Update & Observations

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Quinnlin is doing great. She’s nearly standing up straight and she even was dancing a bit tonight. We don’t want to say that too loudly or people my not bring us food! She is still needy though so I guess it all evens out anyway and the food is still needed. She only needed one pain med but it was probably from all the dancing.

Gage had what we’d consider a tough week. Others might consider it a disaster, but not us. If we did that we’d crawl under a rock as to not want to deal with another day. We (the parents) and the educators (two of the three people responsible for teaching him) had a Back to Basics meeting and we revamped ANOTHER behavior mod plan. We started it today. We backed out and saved face with a punishment that should have never been on the table anyway so it’s all good. It was a good day Friday and we have renewed hope for the foreseeable future. Which is how we do it. We reorganize, reprioritize and revamp. It’s possible that the lack of a simple behavior mod plan coupled with Quinnlin’s transplant was just the push he needed over the already high up edge. It’d been brewing anyway so the behavior wasn’t out of left field. Actually it never is. But we keep at it, because that is what parents do. Work a program…until…

I started a post (then stopped) about inclusion and how families with kids who are not so challenging would do a great service to help families and kids who are challenging. For families with kids who are challenging, we need people to reach out to our kids. We know you don’t want to deal with them, but we need you. Because how are they supposed to learn a better way in the world if they are further isolated? The world for a behaviorally challenged or medically or emotionally challenged kid is rather small. A small circle usually including a friend or two, a cousin, maybe- it is not enough personal interaction outside the immediate family. The post is turning into an essay about inclusion and how families can help kids like ours. It’s kind of emotional though, stemming from this incident.

It was strange Thursday heading to Quinnlin’s now twice weekly lab draw/clinic visit. Feeling familiar but not. Luckily on Mondays we will go to our lab nearby and on Thursdays we head to Children’s Healthcare for labs and clinic visit (with a doc). Not so with Gage – we had to go to the hospital, so this change was a plus. See? It helps to look on the bright side, no?

One sister left Wednesday and one arrived on Thursday. Very helpful. I actually got a good few hours in the office Friday and am here now (blogging AND working). I have an AVALANCHE of work. Professional and personal. I stayed focused for a long time and yet, I didn’t make much of a dent.  But I am so tired, so maybe I am just working at a slower pace? Or maybe there just is a lot of work!

NBC interviewed us this week for the Today Show and I am fairly certain I had a wardrobe malfunction. Probably slight, but still. Just so tacky! Cheryl and Steve joined us again, because they are very, very sweet people who also want to help raise awareness about PKD and organ donation. I sent a bunch of pictures to the producer and maybe we will speak on Monday if they have questions. The story is slotted for Thursday. We are hopeful they will mention the PKD Foundation which would honestly, be one of the biggest PR gifts the Foundation could get. We share our story because we want awareness about PKD. They have all the footage that Julie Wolfe had (3 hours I hear) and so it will be interesting to see how they produce it. For the record – Julie Wolfe had a lot of footage without me sobbing!

The help! Oh, how the food and gift cards are helping! People are delivering groceries. People are delivering food – just stopping by with soup and bread and desserts! We are saving the gift cards and full meals for when The Village has to get back to their lives. But oh, how we cannot wait to order pizza, or pick up take out from outback or chilli’s! Our 24 fresh/freezer dinners are wonderful. Pasta last night and lamb tonight! Our house is clean, too thanks to a very special person in my life. The kids are so nicely distracted by their gifts you all have sent and brought over. And thanks for remembering Gage. Your gifts to him specifically have really helped him remember people love him too (you’d be surprised that is a problem, but it is). Thanks too for those that have donated to Quinn’s medical fund account. Such a wonderful way to help us in the future. We’re overwhelmed with your outpouring of love for our family. Thank you to our Village for your love and gifts and time and concern and prayers and support. And well, everything you do to make the road easier. One day I’ll be able to thank you all formally.

I just sent out my email blast to people to sign up for the Walk for PKD on November 15. I don’t care if you can physically be here with us! Join our team anyway and ask 20 people for $20. If Quinnlin and Cheryl’s and Gage and Jody’s stories have touched you at all, please consider helping us out. To join our team, visit  our Team Page – if you’d rather make a donation to support Quinn, Gage, Julian or myself, go to the team list at the bottom, click on the eyeball next to our name and donate to one of us that way. Every size donation helps! Last year we had something like 170 people donate to our team, so it takes a lot of people giving.

That’s enough for now I guess since I really am at work to work!

Friday Photo Fun, when Jody was just a friend.

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Before any of us knew Jody would give Gage a kidney she kind of liked us. Well, she really liked the kids. But we came with them so we were kind of a package deal. (I’m posting this in honor of the fact that Quinny B is going to spend the night with the donor family #1)

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Friday Photo Fun

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Friday Photo Fun, Public Service Annoucement

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This was my gift to Julian for Valentine’s Day. He will tell you that we weren’t exchanging gifts, which is true, except I love this artist’s work and so this gift, while paid for by me, was from the kids! So it was not included in the “no gifts” policy is what I say.

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Molly Parker-Myers is the talented artist who created this lovely portrait. We did it completely by email. I sent her a few pictures of the kids and gave her some information about what they like…obviously dogs and earrings for Quinn and trees and Indiana Jones for Gage.

Did she capture them or what?

I know you want to get one of your kids. Or your dog. Or your cat, even. Molly didn’t ask me to do this, but she knew I was going to…so visit Molly at her site and email her at brooklynmama@earthlink.net. You can’t believe how affordable this was…it took about two weeks and was mailed safely just in time for V-day!

We just love it. Now go order one for yourself to love.

Trauma Tuesdays (on Wednesday)

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Excerpt from Trauma Through a Child’s Eyes (By Peter A. Levine and Maggie Kline) reprinted with permission from publisher.

“Daddy, daddy, let it go, let it go! Please don’t kill it! Let it go!”

These are the terrified screams uttered by ten-year-old Teddy as he bolts from the room like a frightened jackrabbit. Puzzled, his father holds a motionless tree shrew in the palm of his hand, one that he found in the back yard and brought to his son. He thought it an excellent and scientific way to teach Teddy how animals “play possum” in order to survive. Startled by the boy’s reaction to his seemingly harmless gestures, Teddy’s father is unaware of the connection that his son has just made to a long-forgotten event. It was an “ordinary” event, similar to one that millions of us have experienced.

On Teddy’s fifth birthday the family pediatrician and lifelong friend came for a visit. The whole clan gathered around the doctor as he proudly showed them a photograph he had taken at the local hospital of baby Teddy at age nine months. The boy took a brief look at the picture and then ran wildly from the room, screaming in  rage and terror. How many parents, teachers, babysitters, and health care providers have witnessed similar mysterious reactions in children?

At nine months of age, Teddy developed a severe rash that covered his whole body. He was taken to the local hospital and strapped down to a pediatric examination table. While being poked and prodded by a team of specialist, the immobilized child screamed in terror under glaring lights. Following the examination he was placed in isolation for seven days. When his mother, who had not been allowed to see him for over a week, arrived at the hospital to bring him home, Teddy did not recognize her. She claims that the boy never again connected with her or any other family member. He did not bond with other children, grew increasingly isolated, and began living in a world of his own. Though by no means the only factor, the hospital trauma experienced by nine-month old Teddy was an important, possibly critical, component in the shaping of Theodore Kaczynski, the convicted “Unabomber,” who sent letter bombs to various people involved in technology and wielding corporate power – arguably, his revenge against the same dehumanizing forces that overwhelmed and broke him as an infant.

Cherylc asked specifically about my reference to the Unabomber and so I am including the above excerpt. Earlier in the book there’s a paragraph (couldn’t find it) setting up a scary case study and cautions readers, telling them that trauma isn’t going to make every kid a serial killer.

It’s worth repeating: Trauma in infancy and childhood isn’t going to make every kid a serial killer.

But we also can’t go through life expecting there are no after effects of trauma for the kids that experience medical trauma, or a one-time event (they address that, too) or years of medical interventions. Because this life, the life of medical intervention is not normal.

I know many of us parents suck it up and make it normal. It’s a survival technique, it’s our way of coping (or at least it’s my way) because if we don’t embrace this life of sick as our normal, there will be hell to pay in the Emotionally Well department. We have to accept the situation. But I have to also realize that accepting it doesn’t make it all normal. And it doesn’t make it right. And it doesn’t make it easy. And it certainly doesn’t make the residual affects on the kids or all of us go away.

I am sure some people experience trauma as a child – as a victim, a witness, a patient – and they are just fine. They grow up without some of the outward symptoms of trauma that Gage has experienced. But not everyone is that lucky. We’re certianly low on that around here. That and good genetics.

I think reading this book is enlightening ways that aren’t always “Ah-ha!” but sometimes is “Ah, crap.” And reading along and reading some of these case studies is hard to do on the best of days. But I still go back to it is better knowing than not knowing.

Right?

30 days of Nobla.

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I finished 30 days of posting to the blog. I’m kind of proud of the fact that I was able to complete the task being out of town and all.

And it was a good habit to get into; that of posting each evening. So, I think I will keep at it. Most of the posts I wrote at night except maybe a few. It’s a good way to recap and look forward.

Cheap therapy too.

The City Is Buzzing

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Atlantans are busy talking about this talented group of kids as they are making the city proud.

http://www.youtube.com/watch?v=q4TIitZpqv4

Lyrics

Obama on the left
McCain on the right
We can talk politics all night
And you can vote however you like
You can vote however you like, yeah

Democratic left
Republican right
November 4th we decide
And you can vote however you like
You can vote however you like, yeah

(McCain supporters)
McCain’s the best candidate
With Palin as his running mate
They’ll fight for gun rights, pro life,
The conservative right
Our future is bright
Better economy in site
And all the world will feel our military might

(Obama supporters)
But McCain and Bush are real close right
They vote alike and keep it tight
Obama’s new, he’s younger too
The Middle Class he will help you
He’ll bring a change, he’s got the brains
McCain and Bush are just the same
You are to blame, Iraq’s a shame
Four more years would be insane

Lower your Taxes – you know Obama Won’t
PROTECT THE LOWER CLASS – You know McCain won’t!
Have enough experience – you know that they don’t
STOP GLOBAL WARMING – you know that you won’t

I want Obama
FORGET OBAMA
Stick with McCain and you’re going to have some drama
We need it
HE’LL BRING IT
He’ll be it
YOU’LL SEE IT
We’ll do it
GET TO IT
Let’s move it
DO IT!

Obama on the left
McCain on the right
We can talk politics all night
And you can vote however you like
You can vote however you like, yeah

Democratic left
Republican right
November 4th we decide
And you can vote however you like, I said
You can vote however you like, yeah

I’m talking big pipe lines, and low gas prices
Below $2.00 that would be nice

But to do it right we gotta start today
Finding renewable ways that are here to stay

I want Obama
FORGET OBAMA,
Stick wit McCain you gone have some drama
MORE WAR IN IRAQ
Iran he will attack
CAN’T BRING OUR TROOPS BACK
We gotta vote Barack!

Obama on the left
McCain on the right
We can talk politics all night
And you can vote however you like, I said
You can vote however you like, yeah

Democratic left
Republican right
November 4th we decide
And you can vote however you like, I said
You can vote however you like, yeah

________________

I can’t believe that we have the opportunity to elect an African-American president. I’m all teary-eyed thinking about it.

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