Quinnlin’s swimming season is over! Five swim meets in which she did fabulous, but most astonishing are the friendships she developed and how she wanted to right there in the middle of things! With typically developed kids! It speaks to how much her Village surrounded her with opportunity and encouragement (mingling and opening up a bit, and speaking her mind for starters) to branch out more.

Her vision disorder, unsteady body and weak legs have always held her back from getting into the action because she felt so scared all the time at which the speed other kids moved around her. Early on she learned the best way to stay safe was to get out of the way, except that caused her to be too far out of the way and often times this excluded her from life experiences.

But being on swim team this year was different. She was just a regular little girl on a neighborhood swim team enjoying what so many other girls and their parents take for granted.

Sometimes it just feels better to have someone in the kind of boat you are in, you know? Another mom to a child with ARPKD sent me this note and it made me laugh:

I am so jealous that {my child} can’t be on the no steroid protocol. Too late for us. What a thing to be jealous of! Is that against one of the 10 Commandments? Thou Shalt Not Covet Thy Neighbor’s Transplant Protocol.

If she will let me I will give her proper credit, until then, I’ll take credit!

Why?

I write this as I sit in the radiology waiting room. I don’t enjoy waits of any length. I have no patience. None at all. But I sit here & I know why I sit here waiting, without a doubt, no matter how many times they assure me that I can back out at any time. I will not.

I am typically a person of decision. I have no process that I go through, no analysis. I look at the situation & the answer is already there. I don’t ever remember making a conscious decision to donate a kidney to Quinn. It was something that when the request went out, I just knew, - that was what I would do (although at the time I thought it would be Gage). I’ve never doubted my decision for a second, if it was a decision.

I mean, most of you know the Roberts – who wouldn’t want to help, if they could? And I know all of you Internet Peoples (as Quinn calls us) have already helped in countless ways. And you’ve included me & Quinn in your love, prayers & good karma wishes. For this I can’t thank you enough, because at the end of the day the only thing that is important is - that Quinn gets a transplant & a chance at healthy life. A life where she gets that first kiss, goes to the prom in a spectacular dress (one with lots of bling for our Quinn!). A life where she gets to hang out with the girls at the beach, drive her mom’ second or third hand Volvo & run & play & dance.

But in the end, I want to donate for only one reason & one reason only – I love Quinn. I love Julia, Julian & Gage. And to all the Emory doctors, CHOA doctors, social workers, nephrologists, psychiatrists, transplant coordinators, I know you have to ask me the same question over & over again: “Why do you want to donate to Quinn?” And this is my final & best offer & it is enough – love.

So I sit patiently (patient as I can be), because as a good friend reminded me recently, doesn’t it all come down to one thing anyway?

Love is Patient

Love is Kind

I Corinthians 13:4a

And that is why.

When you are caring for a couple of sick kids it means you have to be in front of a lot of health care professionals. Doctors, nurses, assistants, insurance staff/accounting, technicians, clerks. You come into contact with a lot of people and a lot of personalities.

On any given week we’ll see 15-20 people in the regular care of Gage and Quinn. When the situation calls for more care (um, like, you know, a KIDNEY TRANSPLANT) there are just more people (and paper work and tests and results) to navigate and manage. As in life, you don’t click with everyone you interact with on a daily basis. People rub you the wrong way (you rub people the wrong way) and they are dismissive and insensitive. Some are dismissive in a way that is condescending. Which can be both infuriating and eye-opening. Because that probably isn’t going to change on the 2nd, 3rd or 20th visit so it’s best just to find a way to deal.

What I want for one of my kids doesn’t always line up with what their health care providers believe is best for them. And that’s okay. But it’s not the last word.

That’s why they invented The Second Opinion.

It doesn’t matter what the issue is; it is your business, your right and your responsibility to get your questions answered. That is why there is a 2nd opinion.

Getting along with everyone, everyday just isn’t possible, you know? Sometimes you can’t change providers; the options are limited in your area, your hospital or specialty and you have to work with who you’ve got. It goes back to intuition. Follow your intuition. Always.

For my kids, it’s my responsibility to make sure I follow my intuition no matter who is providing care - from front office to doctor. Sometimes I have to be creative in managing all the situations. Sometimes it is okay and right to push back. And you know what happens? People get pissed off. And you know what else? I’m okay with that. Because when I’m tucking my kiddos in bed, never, anywhere in my thinking about the day behind us is one thought about who I might have pissed off while being their advocate.

See? All this drama that is my life right now left me totally failing to acknowledge two very important dates! Gage and Jody’s Kidney Transplant Anniversary - April 27 and May 27.

These last months with Gage? Pretty traumatic for all of us. Dealing with the mental stability of your child who wants to die is well, bottomless-pit-heartbreaking. But I have to say, through it all, I was glad he was living. I was glad that he’d been given a chance by you Jody, to live off of a machine.

The machine? Life-saving, yes. But the impact of living such a life? Sucks.

Back to you. As we embark on our family’s 2nd bout of in and out of body kidneys I want to thank you. I feel like you trained me as the mom to a transplant patient in how to deal with a potential/then donor. I think we did alright, you and I. I’m grateful for how you let me be involved in your process as you tested and got almost approved, then approved.

Thanks for the support of your family. Thanks for praying for my boy to live. Then giving him a chance. Love you. And your rockin’ diet coke, chocolate trained, gently used kidney.

Quinn on why her caterpillar is not moving, “It is just sleeping like Mommy does during the day.”

Julia, texting: “WHAT? That brat.”

Julian, texting: “I told her that we shouldn’t monitor mommy’s naps.”

Julia, texting: “Exactly.”

In my defense, a couple of days a week I have a power nap during homework time that can be as little as 20 minutes to as much as an hour and a half.

_____________

On the way to Gage’s play therapist

Me: “Well, you can tell Ms. Playwithme.”

Gage: “I HATE going there! Why do you tell me when we are going? I don’t want to know when I am going, just bring me and then I’ll know! I HATE going there!”

Me: “Well, it seems to be working because you sure are communicating your feelings very well. I am so proud of you!”

Gage, dirty look.

Me: “You gotta admit that’s a little funny.”

Gage, smiling a little: “No. I don’t.”

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Discussing the ratings of movies…were Julian, my nephew and Gage and Quinn

Quinn: “Well who goes and sees an X movie?”

Without hesitation, Gage: “Auntie Carol.”

It is an understatement to say that AC is mildly bothered by this revelation. She wonders what type of person they think watches an X movie and why they think that person is her. AC, as she hangs out with the cherubs more and more (which might not be likely if they keep referring to her as the pornographic-seeking auntie), will learn that most of the things they say are unconnected pieces of info strung together for no particular reason.

_____________

Quinn: “I’m drawing a pig.”

Me: “I see.”

Quinn: “Did you hear how I say drawl-ling…like a Jewish person?”

WHAT?

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Gage, cleaning the area around the washer and dryer from lint and old dryer sheets, moved the dryer enough to knock the venting hose out of the wall and me pointing it out to him why I had to stop the dryer.

Gage: “I guess you are going to put this on that list of things I have broken.” (referring to my entry Destruction that I showed him)

Me: “Well, I’m not going to count this one as an on purpose breaking because you were actually being helpful doing laundry and cleaning.”

_____________

Quinn, who has addressed me as this since she learned how to rhyme, like when she was 3: “Mommy Bonny.”

Me: “Mommy Bonny loves you.”

Quinn: “Well Mommy Bonnies love everyone.”

_____________

At the urging of myself and her husband, Quinn’s Potential Donor #1 (QPD#1), is letting me blog about her urine. She was very reluctant (”Absolutely NOT!” she said) to let me blog it but then she didn’t get the jug over the weekend and so I told her she simply HAD TO let me blog.

She is concerned that a funnel wasn’t included in the collection kit, but our QPD#1, she’s smart, so she is finding that a plastic container works pretty good too.

If she were writing this she would tell you that it’s just pee! Pee! And those things are private. But then I guess she figured I might need some blog material and so here I am. Cheryl is the wife of Steve, who for a long time helped our family in the God department after Quinn’s birth as he was on the staff of our church. She and Jody, Gage’s donor are friends. She has two kids - teenagers! A musician son and ballerina daughter. Cheryl had given blood to become a donor for Gage and was in line after Jody. For the last two years since his transplant she’s said she would be there and ready when Quinn’s time came.

So here we are. I’ve asked her to be a guest author and am expecting a post soon. Maybe after she’s done keeping up with a big jug of pee. The urine collection is for them to figure out if she has any protein in her urine in a 24 hour period. If there is that could be an indication that she has a kidney issue. Am thinking that would stop the process for her and not sure if they investigate why or not in order to proceed.

So far, she’s filled out paperwork, given her blood, provided 3 BP readings and kept on the donor team to get things moving along. She’s motivated.

Why, you ask?

She just wants to help my girl. And she’s willing to let me talk about her pee. That’s pretty spectacular, right?

Guess which Pinewood Derby car for Scouts that Gage and his Dad made…

Can you believe he only got 2nd place for Most Creative?

It’s April. Back in December, Quinn was evaluated for transplant. Sure, they said, she needed one - just not yet. So we started the waiting process while we waited for her kidneys to fail (more).

In February we got a second opinion from another transplant center and they said that at their center, she would be processed for transplant, given her (lack of) kidney function and her on-going quality of life issues.

Miraculously, at the same time our local center said they would process the paperwork, based on slightly worse lab values and quality of life issues. The paperwork was sent to the hospital’s financial department for it to be - I don’t know, filled out/packaged up - and sent to our insurance company in the next couple of weeks. I’ve called Quinn’s case manager at our insurance company and told her it is on the way.

If history repeats itself we’re looking at…

• 2-4 weeks financial approval (month of April)
• 3 months live donor testing
• 1 month to schedule transplant

So that’s around July - August, give or take. That’s the beginning of school. Quinn will likely have it near the beginning or after school starts. Which completely sucks, you know, if you are entering 2nd grade and enjoy school. Also, with the time frame we are facing, I suppose it goes without saying (a pesky reminder) that she could end up on dialysis.

This time frame is not what we had hoped. We’d hoped she’d be able to be transplanted early summer so she could enjoy some of what summer is all about and be physically healed by the start of the school year.

Luckily, our Quinn Potential Donor #1 (overall PD#2 - see how confusing it gets?) is open to time frame and location (I know, she’s terrific, right?) but we have little to no control over the situation. I can help things along; make sure paper work gets routed, get tests scheduled, and that all the parties are talking.

And there are some parties involved: QPD#1, us, Quinn transplant coordinator, donor transplant coordinator, test schedulers, team of doctors for donor, team of doctors for Quinn, insurance case manager, insurance financial department.

That’s a lot of wrangling. There’s only so much that can go as smoothly as possible, right?

- I finally had a chance to speak with Quinn’s BCBS case manager and I am currently all kinds of love for BCBS. She actually said things like, “I’m here to help” and “I will follow up with that” and “If anyone has a problem, have them call me, just give them my number.” Seriously, I almost started crying when she said, “I will call your doctor and get that letter.”

- I have a new (old) car finally. It’s an older car than my last one - a 91 Volvo 240 and I love it. It’s a quriky car and Julian largely thinks it’s amusing that I have a car that cost $2000. We had to spend some money on basis repairs, but we found that in the other FIVE cars we looked at as well. Plus, I had to go to the Volvo parts seller for some tender loving care items that were cracked/broken. But it’s all good. It’s reminiscent of my VW bug that I loved. Julian made me strongly encouraged me to sell it when I got pregnant with Gage. This is that - but safer and with air (that needs a freon recharge. I love the simplicity of it - no computer chips, minimal power items to break. I am sure my mechanic is just as happy as I am about it today.

- Gage is doing fairly well. We still have some ups and downs with behavior. He still mildly talks about wanting to be dead, or wanting us to kill him, but it’s not frequent and he’s not saying he wants to kill himself. And he hasn’t grabbed a steak knife or put a rope around his neck in months. We asked to increase his anti-depressant about 6 or 8 weeks ago and there was a noticable difference in the quality of the engagement with us and with life. He plays outside daily now and is engaged with us when we’re doings something. Don’t get me wrong - he still has issues - but it is better.

- Quinn is feeling poorly. We need to get on with the transplant already. And um, I know putting this out in the universe is tempting fate - but I swear, I’m going to lose it if she goes on dialysis and I think there is a good possibility that she might need it. It’s just such a remarkable difference from a few months ago.

- I’m still loving our BCBS case manager.

- The obsessive checking of craigslist for newly listed old Volvos has brought me to the realization that if you are obsessive about car shopping your house can get pretty nasty. It’s a mess. This does not help my mood. Tomorrow really, I’m on it.

- My nephew’s situation is challenging. Because of his the type of special needs in particular he’s not fitting neatly into a specific category/program. I’m his very own case manager. Which adds to why I need a case manager for Quinn.

- Work is going well. I have some great clients who are letting us do some strong work. There is one job I opened in late 2007 that still isn’t approved and printed - and it’s just one piece. It is the longest open project I’ve ever had on the books.

- A while ago a did a post titled “100 Things About Me” and I only made it to 52. The list is now into the 70s but I am still working on it. You’d be amazed about how hard it is to come up with 100 interesting (and that is highly debatable) things about me. And the list is getting “more boringer” as Quinn would say.

- I’ve been thinking all week about becoming a vegitarian again. That’s as far as it has gone.

- I have a lot of posts brewing in my head, but I can’t seem to get them typed out. They involve…my thoughts about going into transplant #2, my fears about our good kidney (HAHAHAHAHA) karma running out, my resentment of doctors who don’t listen and one about working/mothering and how sick kids change that about me.

That about does it for today.