Julian and Gage studying

Julian: “So, is the rabbit a wolf’s prey?”

Gage: “Depends on how big the rabbit is.”

I woke this morning to a couple of emails from friends, letting me know that Quinn’s story had found it’s way to the AOL page via this news source. This story (encompassing the entire journey) has links to the Today Show’s story, as well as links to reporter Julie Wolfe’s story and this blog. They didn’t have a link to the original story from WXIA last Christmas (with the now infamous Santa letter) but I am thrilled for the exposure that Polycystic Kidney Disease is receiving.

So you know, if you are looking for information on PKD please visit the PKD Foundation. The PKD Foundation has been an invaluable resource for our family and for me personally. I’ve become informed about PKD, I’ve become a better advocate for the kids, I’ve not felt so alone, and I’ve met people who have become lifelong friends of mine. Being a volunteer with the Foundation has offered me the chance to learn and grow and to use my energy in a positive way towards fighting the disease that threatens the lives of my children and the delicate balance of our family.

We did the story last Christmas Eve specifically because it would be exposure for PKD and the PKD Foundation. We’re thrilled the story took off and we owe that to local reporter Julie Wolfe’s story telling. She films her her own stories, edits, writes and reports everything you see on the WXIA story. She’s fun to follow on Twitter, too. She’s a runner, and she’s funny. And she saw our daughter’s surgery and took pictures of the good and bad kidney side-by-side. She and I had a moment when she was asking me questions minutes after Quinn’s surgery was done. She was the first person who came out and said that the surgery was successful. She had tears in her eyes. We shared a moment, an understanding, I can’t really explain.

A good place to start on the blog is the About Me page to the right. It is the abbreviated story about where our family has been. In between that are what fill this blog. It’s mostly my wishes for the kids, about how our family survives, how my marriage doesn’t crack under stress, and how my kids – who’ve fought to live – survive in a world of “normal” that other people define.

Welcome to our normal. Sit down and stay a while.

Gage wanted to write in his journal (“Anytime I have something new to say.” he says)

He writes: (typos corrected)

“Every day I go to Mrs. Special Ed for math and reading. I like it a lot. I have a typewriter to type on for class writing assignments”

He then drew two drawings (bird’s eye view) –

The top drawing was of Mrs. Special Ed’s class room –

With a sheet of math, then a book, then he wrote SS (for social studies) on a paper, then the alphasmart (“typewriter”)

Then the bottom drawing was of Mrs. Homeroom’s room.

He drew two large desks and they were full of papers with writing on them. Besides the desks there was a circle with an ? mark in it.

I said, “Gage, I am really glad you wrote this down to tell me about this. You seemed to have a really good day. Do you like going to Mrs. Special Ed’s class?”

And he said, “Yes.”

Short pause

“It is better for me because a lot of times in Mrs. Homeroom’s room I was very confused all the time.”

I asked him if he might have liked school a little better and he said, “Maybe”

I have so many thank yous to write. And if I didn’t have Quinn’s 2 months past due birthday party on Sunday they might be going in the mail. In fact, they might be addressed. And written. But sadly they are not.

It stresses me out to know that my thank you notes aren’t done. Ever since ever I’ve written thank you notes. I wrote one the day after I met Julian’s parents for the first time, for goodness sakes! IT’S WHAT I DO.

There will be some of you that tell me DO NOT SEND ONE, but I will anyway so get over it. If I don’t send one, then your gift or good deed did not end up on my list. And trust me, you want this thank you note. It’s specially made and marks the transplant occasion perfectly. So you must tell me in a month if you haven’t received it!

We’ve been eating the some 30 prepared dinners bestowed upon us and I’ve just ordered our Thanksgiving dinner with the credit leftover compliments of four people who made donations. Two of them are blog readers and I do not know them personally. People have also dropped off goodies, handmade freezer meals, gift cards for food and treats for the kids and yet, they’ve gone un-thanked too. But please know how much we’ve appreciated every morsel. The food has feed the bodies that take care of the babes that need us and they’ve feed our souls because of the love you have shown us.

This weekend we will enjoy delivery of two more meals from another fresh meal deliver company (from 5 people) and I cannot tell you how helpful that is because we are barely getting by on time with the Walk for PKD (last Sunday) on the heels of Quinn’s transplant. I wasn’t prepared for how difficult it would be to reenter society AND take care of the family’s every need. It is taking (me) longer than hoped for to get back to our normal. A lot longer.

So know, that even though the special-just-for-you card isn’t in your hot little hands that we appreciate it. We’ve appreciated it all.

Cain Hall and Jon Nite (pictured here) as well as Rachel Farley played at the Walk for PKD. It was awesome to have live music. (I will find some links…). And they were really cute, too.

I am very unmotivated today to blog anything relevant. My head is going through the TO DO list for the Walk for PKD, which is a week from tomorrow. It is also going through what I need TO DO for my own personal list including getting a gift for my neice who is having a baby in January. I need to get working on making teacher’s presents. I need to work on some belated birthday gifts while I am at it and I need to work on some pages for a collaborative book I am working on with a bunch of really creative women. I need to get thank you notes out (about 65 of them!) for all of the help and gifts we got throughout Q’s transplant.

My space at home for such projects is not very organized. I am a fairly organized person but the space (furniture, organization tools) isn’t great for such work space and so I think I am just fighting against being in the room. Except I know when I go in there an get started I will be happy to be doing something creative. I haven’t had much creative time lately and that is putting me in a bad mood. It’s been 5 weeks since Quinn’s transplant and I’ve had no time to myself. I’m feeling it.

Julian asked me what was wrong today and I just said I was in a bad mood. Not at anything in particular, but just a regular bad mood. I think I deserve that.

My sister is visiting for the baby shower and we’ll have a good time visiting even though her trip is short. We might sneak out to a movie toinght, but then that would mean I have to maybe shower, put on makeup and do my hair (my hair needs to be cut!).

See? It’s all piled up right now and it’s going to stay piled up until at least after the Walk, quite possibly after the holidays.

With the focus being off Quinn and on other needs right now I’m having to shift gears and get back into regular living. Which, right now isn’t all the fun.

So, yes, I’d be having a small pity party right now. Check back.

Well, that’s not true; I am the one who favors the lists because they are very easy. I don’t have to have one thought and make it work together while wrapping it up in an ending that ties together with the subject and headline. List posts are easy. Don’t hate me.

- It is a long week. By nature, all of my weeks are long, but this one longer than most. Which I guess works out well for me since I need more hours in the day to get everything done that has to be done – especially for the Walk for PKD that is coming up in a little more than a mere week.

- Quinn is having a little reentry-into-the-real-world problems. It seems that she has forgotten how to do things for herself. Let’s see…like she doesn’t want to be alone. Ever. She wants me to follow her into the bathroom. And wait. Honestly. Good grief. Oh! And she doesn’t want to get her own water, either. Which is very annoying on very many levels.

- Gage is, well, challenging. I know I use that word a lot to describe him. But it is very factually based. He’s a challenge. It’s a challenging time. I’m challenged in raising him. His impulsivity gets the best of him and us and it doesn’t help that he has one of the poorest self images I’ve ever seen in a young child. We’re doing everything we can and on a lot of days it seems that what we are doing isn’t enough. I have a new idea up my sleeve to help with this, but I’m fine-tuning my idea. It may help and it can’t hurt.

- I’m glad to be getting back to work now that Quinnlin is back in school. It will be nice for all of us to get back into routine.

- Someone told me that I must have lessons I have to learn and that is the reason for all of our challenges. Seriously, shut up people. This statement is not helpful to me. Do I have to tell you why? Because I will. Just not this second. I’m too busy working on the list of OTHER things people say that are also not helpful.

- I am happy to report that I have ordered our New Years cards. It’s a small thing really, when you think about it but having it done makes me really happy and I should take happy where I can get it.

- Julian, Scmolian. How I love thee. I just think everyone should know he is a beautiful person with a great heart. I’m lucky to be married to him and be on this road with him. It’s a bumpy road, but traveling with him can be wonderful, funny and endearing too.

- I would like someone to tell me how my kitchen counter stays cluttered.  What little gremlins come in here and paper to it?

- The thank you notes. I’m terribly behind on them, but know we are still enjoying the food and the presents you have sent. The food though. Tangible help still while we are getting our footing. Thank you notes on the way, all 72 of them. Some day. Soon. Maybe soon.

- Must go to bed. It’s 1:30am and we have early clinic. But tomorrow I will not complain because a week ago I met a woman who drives 3 1/2 hours with her son for clinic. My drive is 25 minutes in rush hour. Will not complain.

Quinn: “Mommy, my life is getting funner.”

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Quinn: “You and Daddy make a good pair.”

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Overheard, Quinn to Gage (Talking about what? I have no idea.): “You can do whatever you want except set anything on fire in the house.”

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Quinn (during stent removal day, but I forget what point in the day): “This is the worst day EVER in my life!”

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Quinn (screams when she is startled or mad, or when Gage annoys her): “I don’t mean to scream, it just comes out of me!”

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Quinn (upon learning she gets to go back to school): “I can’t believe it! Because I thought I would have to stay home with you soooo much longer!”

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Quinn (upon seeing me kiss Julian and hold his hand): “It looks very weird to me to see that.”

Me: “Well that’s what mommies and daddies do when they love each other.”

Quinn: “Well, you must love each other a lot.”

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When Quinnlin was diagnosed with PKD we’d never heard of it. We didn’t even know what a nephrologist was (now we have many, many we call our own). We had no idea about the function of kidneys. We didn’t know that urine would be central to many discussions around the family table, in the marriage bed, or in our prayers.

Someone (A) told me that many people in her family had a lot of opportunities to get used to the idea of PKD because they have the dominant version – passed on from parent to child. They’d had a long time of get used to the idea, change habits; prepare themselves. This person felt bad for ARPKD families because it is just part of our world one day. No warning, no time. Just BAM!

Welcome to Poly What?

The land of confusion and sadness. And fear. And while you are at it, welcome to the place Where Nothing Ever Quite Feels The Same.

Because it all changes. The very moment we found out about polycystic kidney disease the world slowed down, it moved slower at that moment. The time between appointments where I would find out information that was pertinent to the well-being of my kids became longer and longer it seemed. I am not sure if that is my imagination looking back. I think a lot about the people who say time flew by when their kids are graduating college and I don’t understand how that feels. Because it does not move fast in my world.

Simply put; it has been the longest 8 years of my life.

PKD has impacted our lives more than I care to admit to myself most days. I am not sure if knowing what would eventually happen – like families with generations of PKD – would have been better than learning about this disease when Quinnlin was 2 days old.

Not knowing what is around the corner has been a part of our lives since we heard the words polycystic kidney disease just over 8 years ago. Kidney transplants for two kids? Didn’t know. Couldn’t fathom. That we parents wouldn’t be able to donate kidneys to them? That either. Didn’t know that I would be happy a lot of the times. Or that I would know profound sadness as I ponder the well-being and mortality of my kids. I didn’t know that the path I was on would lead to endearing friendships and stall others. I didn’t know the PKD diagnosis would test me as a woman, wife and mother by making me flex emotional muscles I didn’t know I had.

I am sure that knowing would have had advantages. But this is the path I am on and so it’s hard to look at a path that would have been easier – or if you are Julian, you’d say, “You can’t go around thinking like that.”

It’s was a rough couple of days. Rough, rough. I can’t even go through it all now because then I would have to RELIVE IT. Gage had a better day Wednesday. I guess compared to Tuesday and especially Monday, it was a stellar day. So, yay Gage. It did involve a lot of “rewards” like time in the workshop with Julian and a drive out to a street where we could see the moon because if he’d still had a rough day we’d be making up school and doing home work and wouldn’t have had time for extra activities.

Tuesday involved a few calls with doctors, several phone calls and in person discussions with the school and an assessment mental health hospital, but he’d calmed down at the end of the day. We did not know what to do and so it involved a lot of back and forth and a lot of emails, texts and phone calls (Julian at the office and I’m home with Quinn) to assess and brainstorm. (This all in the middle of dealing with Quinn’s potential early stent removal but now is being put off until Tuesday.)

As often happens after a crisis, we are a bit shell shocked. Just when we think things can’t get more crazy (ha ha) it does and then we are shocked but we aren’t in a way, because that is what happens to us, do you know what I mean? It’s not all happy-go-lucky around here all the time with kidney donors aplenty, you know. It can also be sad and depressing and exhausting . And so it’s been all of those things.

After an emergency appointment with Gage’s psychiatrist, we’ve done a bump up on his anti-depressant which we also hope will address some of his anxiety issues along with the ever present sadness. We’re probably looking at a 1-2 week wait to see if it helps. I’m hopeful but not a firm believer at this point, because well, that would just be stupid.

We also have gone head first into some other realities. That in or out patient mental health services are in probably in Gage’s future. That mostly likely we will spend the next 18 months looking into alternative educational settings for him (I’ve known this for some time but Julian needs to catch up.) and that at any given moment the other shoe can (and will) drop.

Thank you to everyone that has offered support, tangible, on-hands support and for the notes of love through calls, emails and comments. Carol and Mom for watching over Quinn to keep her out of the drama (as if). Thanks Dawn for your understanding and for having your readers swing by to comment.  The comments and emails have helped sustain me. You believe when I don’t have enough in me. It all means the world to me. All of you have no idea.

So, we are catching our collective breath. Because that’s what parents do. That’s what parents who love each other and love their kids do. They just do. Until.