Quinn was coloring in a Curious George coloring book, while waiting for her birthday dinner of pancakes and crispy, “very crispy” bacon.

Quinn: “Do you see how I am coloring? I am coloring way between the lines.”

Julia: “Yes, that is great coloring! I see Curious George has blue feet and blue legs.”

Quinn: “He is sick. His feet are not as sick as his legs, that is why there are two blues.”

Julia: “Well that is a good way to show that. I wonder how his legs got sick.”

Quinn: “His legs have an infection.”

You are seven? Really? It feels like you’ve lived the life of a 10 year old at least! Or maybe you’ve lived enough to be 15! But I am so happy you are 7, because it is a fun time to be your mom.

I am so proud you are my daughter. I am so enamored with you I can’t even begin to express it. I know your life isn’t what people would call easy – since you’ve had to fight since you were born. To fight to talk, walk, learn and live “normally” but you are a fighter. And it’s incredible to be a witness to it.

When I was holding you seconds after you were born I couldn’t believe I was holding a big-eyed girl. I didn’t know then how knowing you would change my life for the better, but it has. Your diagnosis of PKD changed the course of our little family, and it made me an advocate. When I look back and talk about those first 6 months with you I don’t remember much because I was in a bit of a fog. What I do remember is nursing you, staring at you and oh, how I held you. When you woke up in the middle of the night I would nurse you and sleep with you in your room because I didn’t want to put you down.

Because I didn’t know how long I would have you. I didn’t know what we would face with your diagnosis. I didn’t know then that you would thrive until transplant. I didn’t know that your hugs and loud fish kisses would get me through the day sometimes — sometimes the only thing that seemed positive in that day.

But you know what? You taught me to look at the one day I am in instead of the days ahead. No matter how hard I tried to see into the future and wonder about the struggles we would face as a family, your smile and tenacity to live always brought me back into the moment.

You are a feisty one. That has helped you in the past. I remember the first time you tried to walk with your walker and Ms. Karen and you were MAD at her for making you try. But in a matter of days you were mobile. And then the first time you were in a wide-open space (Pop’s 80th Birthday) we couldn’t keep you still. You wanted to go, go, go! Once you were moving, you wanted to keep moving. What is amazing to me is that you are quite possibly the slowest-moving 7 year old I know but that doesn’t faze you a bit. You are still happy to be upright and moving.

When you were at The Magical School you excelled at trying. Everyone you met in that process – regular education teachers, special ed teachers, OTs, PTs, Vision Therapists and Speech Therapists all said the same things about you – that you were sweet, that you tried your best and that you were a joy to work with. You did amazing things learning over the last four years that have led you to excel in 1st grade. You got your first report card in 1st grade and it’s straight As and all Satisfactory marks! Wow.

Many people talk about having children and how their heart is on the outside of their body; that is how they describe watching their children grow. For me, it’s like you gave me a piece of my heart I didn’t even know I was missing until you were born.

Over the last two years while your brother faced dialysis and his kidney transplant you’ve had some adjusting to do. You’ve had to sit back and let me focus some extra attention on him and it hasn’t always been easy. But you seemed to just know that is how it had to be and you were accepting of it somehow knowing your time was coming.

Well, your time has come. For some weeks now, we’ve been worried and you’ve had to have some extra tests to determine just where you are medically so we know when your kidneys will be done. Because they will. And hopefully we can move swiftly through donor testing so you can avoid dialysis. But I know if we don’t that you will handle it all with grace. How a 7 year old just has that, is completely beyond me. Because I think in part, I didn’t know about grace until you were born. Watching you live has allowed me the opportunity to try to achieve a life of grace.

You are so funny. You tell jokes – but often times you give the punchline in the question. It’s hysterical to watch you laugh at yourself because you start a joke and can’t remember it. So you just make them up! “Why did the plane fly!?” you yell at me. And then you say things like “Because the clouds wanted it to fly!!!” You laugh. I laugh. A lot. Your laughter at yourself makes me smile. These times with you are often what get me through a rough day caring for your and your brother’s needs.

You are extremely open to all people, meaning those with differences. I realize that you are a kid with differences, but still, you are open to other people, all kinds of people and that makes me extremely happy. And that will help you in your life.

My biggest goal is to keep you alive and to do whatever I can to make sure you can participate in a life full of promise. I can’t honestly say that when you were born and I heard the words “polycystic kidney disease” and then found out you, too had OMA, I thought I could handle it. But for you, I’ve tried. I’ve tried my best to make sure that you know that you will live. You will thrive.

I’ve often said you are part of my soul. And as we move towards your impending transplant I’m ever more aware of the role you play in our family’s life and in my life. Because I can’t imagine my life without you. I’m more scared to be going through a transplant a 2nd time; maybe because I know now more things that can go wrong. I pray every single day for your resilience and for my understanding in all things Quinn. I hope that I can help you navigate your little life in a way that you deserve.

Happy Birthday, My Quinny B. Thank you for your amazing gifts you teach me.

Love,

Momma

I can’t believe it’s been a year and a half since the day Jody gave Gage a kidney, but it has. Some days it seems like last week and other days it seems like a few years ago because so much has happened since then.

Like all of Gage’s current struggles. And all of the med changes. All of appointments. Thirty-five pounds of healthy muscle and size on the boy, who used to like climbing trees and hopefully will again soon some day.

Thanks Jody. In fact, during all of Gage’s current battles with depression and defiance, we’re so thankful that he is medically healthy because of your kidney donation. I am not sure where he would be mentally if he was dealing with dialysis while slipping farther down educationally. I’m not sure where I would be mentally if we had all of that to deal with too.

He’s a beautiful boy, who one day soon I hope, will be able to see the beauty again in living life. I sknow this though, there one beautiful kidney in him, from a beautiful soul.

Thanks for giving me the chance to help my boy through all of this. Because I am sure, if he’d not had the opportunity to have your kidney, he’d be much worse off. Or he wouldn’t be alive.

And he’s a light in my world, even if he doesn’t see the light in his. Thanks for helping him when he needed it. Happy 1 1/2 year anniversary!

I love you.

Gage apparently figured out how to use my laptop camera before I did. And apparently he also figured out how to put lip kisses on the photo. I’m taking this as a big kiss from my boy who doesn’t hug or kiss!

Gage’s First Journal Entry*

The translation. Click on thumbnail to enlarge it.

Feelings
I do not want to go to school. I want to stay and do research on science things or social studies at home. Cause at school I do math in a different classroom and in music I do not like to sing in front of everybody.

I am a little worried the drawing on the bottom is of himself dead, but his mouth is open. And Gage told me that him being on the ground like that is how he feels about school.

We had Gage’s emergency IEP meeting about the behavior part of his IEP. We talked a lot of about strategies, and potential triggers for Gage’s angry outbursts. We (by we, I mean us and school faculty) can only control so much, so even if his perfectly splendid teacher watches him all day like a hawk, bad behavior is still going to come out. It is just the nature of the situation right now.

His teacher, the special ed teacher, principal and for a brief time, the school counselor all had great input and suggestions that would blow you away (in a good way). Gage was in the room part of the time and they asked him directly why he hated school and they told him they wanted to help him through this hard time he is having if they can make it easier for him.

We have decided he can drop a subject that he “hates” and is causing him some stress and anxiety. It’s not required and in replacement for that 30 minutes 1x a week, he’s going to help his teacher with science research. He was genuinely happy to hear about the dropped subject and I think it will go a long way towards good karma with Gage – meaning: he thinks we are listening.

Some other highlights

- The play therapist thinks that the journal and talking about the journal contents with Gage shows improvement that he is okay with accepting some help. I almost cried when I read this.

- The school? I almost cried when I walked out of that IEP meeting because you can’t imagine how it feels to have people approach a situation like this in complete cooperation WITH you. All because the sincerely care about one little boy who has had his share of a rough life.

- Today Gage wanted to play outside for the first time in at least 2+ months.

- Gage told me he wants to journal 30 minutes every day. And he asked me to remind him when 30 minutes was up so he can go to sleep (he journals in bed).

- Quinn, the current forgotten one, and I had a dinner date with a new friend and her mom. We wanted to meet because Quinn wanted this new friend to come to her slumber party. And so Quinn is having her first slumber party for her 7th birthday! And three friends are coming to spend the night and maybe two others for dinner and cake! She is simply happy. Tonight she said, “this is the best day ever!”

- Report cards are in for the first semester of school and Gage had Bs and um…nearly all NEEDS IMPROVEMENT and even an UNSATISFACTORY. Quinn had all As and ALL SATISFACTORY marks! I felt so proud for her. A regular classroom, mainstream. That is the gift her Magical Special Ed school gave us the previous 4 years. She was ready to move to this school. So ready.

- Gage has had two days of good marks (I know! I know! I am tempting fate by putting on line, but can you blame me?). He also had a situation with another student that could have been ugly, but he removed himself from the situation. That is BIG. Also, today he had “compliments” for good behavior in the lunch room. Ahh. Never underestimate the power that good behavior has on a parent.

* I don’t know if I am going to have this post up for very long. I am trying to decide if it is too private to Gage. Although he didn’t mind me sharing with the education team.

I have no idea if Gage is feeling better. On Monday he hit the girl in the face, on Tuesday he spent his day in the special ed room doing worksheets all day. He also had to wipe down the sinks in the girls and boys bathrooms and the lunch tables after lunch. Apparently, he didn’t like his Tuesday very much.

He had a much better Wednesday. His teacher said that a boy was aggressive with Gage, but Gage turned the other cheek. This is BIG, because if for any reason he doesn’t like something someone is doing, he has hit or kicked them. He wanted to stay in aftercare because he thinks it’s fun so that is another reward if he can keep things in check. I’m only letting him stay an hour – trying to reduce the time he can hit other kids.

Gage’s psychiatrist did call on Tuesday and gave us a get of jail free card and didn’t make us come in during the ridiculous only 2 available appointments. She said we could wait to increase the meds, currently from the very low dose, until we meet one week from tomorrow.

No.

In other words, “can you just call in the med change with the pharmacy, because I really need to get it increased earlier rather than later.” She agreed to do it and so there we are.

I have no idea if he is better. But he did have a surprising “Journal” entry tonight. He’d found a diary that Quinn had and wondered why boys don’t have them. I told him boys do have them but they probably call them Journals. “What do you write in them?” he said. “Feelings. What you are feeling. Some people think if you write things down it helps. Do you want one?”

“Yes.”

So today after school I gave him a leather journal from my stash. It’s embossed with a logo (freebie) but he doesn’t care. And tonight an hour after he went to bed I hear him yelling. I go up there, surprised he isn’t’ sleeping yet and he shows me his first journal entry. I asked him if I could read it and he said yes. He can’t spell at all, but it didn’t matter. I read it aloud and knew exactly what he was saying. He drew a couple of pictures for me too.

I don’t know if he feels better. But the journal entry indicates something. I know this because it is titled “Feligs” (Feelings. Or my translation: It’s something.)

Julian is under a lot of pressure right now. Well, we both are, but this is about him. And while I am still not sure he is a true believer in clinical depression, he has admitted that Gage seems blue. A little off. Not quite himself.

I pointed out to Julian that he himself is much the same, less the drop kicks and disrespectful behavior. So I’ve been coming out of a funk lately and been offering lots of good, wifely support. You’d be amazed at the amount of wifely support. Once recently, I patted him on the arm and said “Why don’t you go to bed, and I will unload the dishwasher.”

Below speaks to the need for clarification; and the trouble texting on the blackberry.

Early marital conversation during a morning while I was at the hospital for labs with Gage…

Julia: “I am very worried about you and I think you should talk to someone to work some things through. I understand why you feel like you do and if I can help I will.”

Julian: “Thanks. I probably need to come to terms with some things.”

Julia: “Like what?”

“Like if we should be married?”

(I’m thinking HAHAHAHA, we’re so funny, we can even joke around when things are THIS serious! We’re such a funny couple…he will get it! HAHAHAHA)

Julian: “Not sure. Just need to prioritize. Not sure if I can give you any clear answers.”

Julia: “Not sure if we should be married? Hummm, maybe it is time for marriage counseling.”

Julian: “No. This is not in question. Our marriage is pretty safe.”

————————-

When I get back to the office, he comes in my office and closes the door. He says we’re fine, in fact, that is the only thing that is solid right now. “Then why did you say that? I ask, and he replies “Say what?”

When I show him the text on the blackberry, he says he didn’t scroll down and only saw “Like what?” and then he breaks out in hysterical laughter.

Glad I could cheer him up.

The school scheduled a team meeting on Thursday at 3:00 for us, his teacher, SE teacher, counselor and principal. I had to take the time they offered. It was the same time as this week’s appointment for the psychiatrist. So yesterday morning I called to move that appointment and there were no other times available this week. Which wouldn’t be a problem, but she is supposed to up his meds this week – by double. So I told the assistant this and said I needed to speak with her about the increase and how we would work it if we couldn’t get in.

She never called me.

So I called the office again and got another assistant. I asked her if the good doc had any appointments this week – I explained that I called to cancel yesterday but needed to see if there were any cancellations. There weren’t. I also said that I would like to change doctors, that I wanted to get in the queue for another doctor who is more available than two days a week.

They aren’t accepting any new patients.

They all only work two days a week.

Really? Seriously?

“I’d be interested to know if they call their patients back on their off days though.” I said.

I explained as calmly as I could that I need to be able to get in touch with a doctor and have them return the call in a reasonable amount of time. And that the good docs schedule wasn’t really working with our family’s schedule, “You know what I mean? For example, you just told me she isn’t available now until the end of October. And if I’m to think we are to come in weekly, then I’ve already missed the window to get an appointment.”

“She has too many patients if she is asking to see my son weekly, then has NO appointments available in which to actually, you know, see him.”

Our choice for a quick 30 minute appointment this week are: 1:00 – missing school. 4:45 – missing piano. Both which he wouldn’t care to miss.

She assured that the good doc must have not received my message. If that’s the case, then I have even bigger problems then I thought. It’s a psychiatry office!

Gage hit a girl in the face today after a struggle with a book. HER book. The teacher saw the whole thing. On Friday he kicked a kid in the back. So, many discussions and notes and emails are flying around.

- Julian is out of town and feels guilty, which is stupid because this also happens when he is in town. Like Friday. And last Monday.

- One more hit and the simple battery charge at school = one day suspension. Which is exactly what he wants – he doesn’t want to go to school.

- Advice was given to work his butt off at home. “If he wants to get physical, get him physical” which is fine advice, except he doesn’t mind cleaning and chores. And of course, he’ll have all of our attention during this suspension, which also doesn’t help.

- His special ed teacher is hosting Gage’s in-school suspension tomorrow and promises to make it as miserable as possible.

- IEP meeting on Thursday. Principal is coming.

- I am going to call and see if we can change psychiatrists. Our current one only works 2 days a week, and I think we need someone who is there full time.

- I think the current things Gage likes are: after school care and cub scouts. If he hits/hurts those go away this week. Immediately. When I told Gage “No extra activities” he said “so, no more piano?!” because he says he hates piano now. I said, “Well no, then you will go twice a week!” Clever, I know.

- I am going to call information on the out patient facility for kids 4-12. Apparently they attend school then 3 hours a day there, from 3-5 days a week. Reminds me of dialysis, except without the life threatening thing. Unless you count death talk.

- Gage is now off of any remnants of fun things he had at home to do, like game boy and legos. Gone.

- His special ed teacher recommends that we up his time again so that mornings he is in her room. Two hours in the morning, then afternoon one-on-one help in the classroom.

This is not the boy we know. Not the happy boy who seeks fun and laughter and tree climbing. The boy doesn’t ever want to leave the house anymore. He doesn’t really care about seeing friends. Well, except for his cousin, Andrew.

My boy is slipping away before my very eyes. And I feel desperate to try anything, but I am not hopeful that anything will work. Most days I wonder if we will ever reach him and I wonder what his future holds.

I’m just so sad for him.

It was a stunningly wonderful day on Saturday in Atlanta. Not too hot, not too cold. We didn’t have the turn out we’d planned and hoped for; but the group we had was awesome. Together, we raised about $55,000. That is not bad from the about 250+ people. I think the number will rise as donations can come in through November 9th.

We have the most dedicated people to help pull this off and without them this could not be done. You all know who you are and I am eternally grateful for you. You help me have a voice for the kids and for other families faced with PKD.

It was a lot of work, as usual, but this year it was extremely difficult because of the urgency in the situation with Gage. I sense that Gage is a bit better. And by better I mean, he only seems sincerely unhappy about 85% of the time. The other 15% he is nearly enjoyable to be around, except maybe the shifting 5% he is talking about killing himself, or asking to be killed, or talking about how he doesn’t care if he dies.

He had pure joy written over his face while he was around his cousin this weekend. Andrew brings happiness to Gage and that was good to see. They had a good, but sadly short, time together.

The night before the Walk Quinn spent the night with Becca, who is Gage’s donor, Jody’s daughter. Quinn can’t stop talking about the party that Becca had – it was all very exciting for Quinn to be part of a “really big girl party.”

My house is a mess. And Julian is traveling for a couple of days. So absolutely nothing will happen to make the house look better. Or maybe my friend, M will come and help me with that!

Gage has a play therapy appointment today and Quinn has a ceremony at the same time as Gage’s appointment. Guess who will loose out? Poor Quinn. Gage also had an IEP meeting Thursday. Sound be fun, since in part, I think we will be discussing his recent “simple battery” charges. Seriously.

My BFF sent me the most awesome gift (from here) of a bracelet with 12 photos on it (it’s two sided). Just because she loves me and knew I needed a pick me up. And well, she can’t come over and list-make for me and get stuff done, so this is the kind of thing she does. I mean besides talking me off a ledge. Because that’s what friends do. Since I am posting this picture, does this count as my Friday Photo Fun?

I just had to cut THREE awesomes out of that paragraph. A sad example I need to expand my vocabulary.

Friday as I was getting things together for the Walk/Run I got a call from the NIH. Apparently, our family is a genetic researcher’s dream. They’ve just discovered a gene mutation, previously unknown, that has caused the kid’s OMA, PKD and developmental delays. The researchers involved are very excited, or “giddy” as we parents like to say to have this mutant gene identified. When we were there in April, they said if they could find it it would take 1-2 years to locate it. I don’t know much yet, you know, SINCE IT WAS UNKNOWN UNTIL NOW. I can only say that Dr. Wonderful had suspected this all along. If I could tell you how strange it feels for us to have a “known” factor in all of this, then I would. But I simply cannot. I know this doesn’t change what course the kid’s disease progression will take, but there is some comfort in the knowing. I hope to know more this week.

How’s that for a cliffhanger?