Gage didn’t get much sleep last night. When I went to bed at 1:00 he was still up. He just couldn’t settle in and so when he is awake, one of us has to be awake (he takes apart things in boredom) to keep the house and contents from harm make sure he settles in eventually.

I think he feel asleep around 1:45 or 2:00. That’s the last time I checked the clock and dozed off. That is not enough sleep for an already everything challenged boy. And it showed. Three time-outs at school (new strategy as part of Operation Behavior Mod, #334) and homework meltdown (1 hour 45 minutes to discuss a paragraph story) and off to bed he went. It was bad.

For some reason the boy cannot express and check himself when he is feeling frustrated. I like to think I know him pretty well (except what will make him listen) and why he might be the way he is and what I do know he is that he is very complicated.

Years of being behind developmentally, years of therapy and goals to achieve. Literally every single thing he has learned was at one time noted on a goal sheet. A report. A care plan. An IEP. He’s been very closely monitored his entire life. And frankly, I think he is tired of it. Throw on a progressive disease and very little control over appointments, procedures, surgeries, medications and well, you have a boy who is bursting to say things, but not the vocabulary. After years of not being understood due to speech issues (at the age of 4 he was only understood 50% of the time) I think he just quit trying. And now? The words aren’t there at the split second he needs them. He can, if he is calm enough to wait, get the words to come out, but he is so impatient with himself that he shuts down.

Throw on 4 hours of sleep (need to get him up early so he eats before his meds kick in) and you have disaster. We survived though. And tonight when he was going to bed he said, “I know you hate me.”

What do I say to that? I tell him that I love him and that I tell him that all the time, but he doesn’t always hear me. Some of the ways I try to show him is affection, but he normally turns me away. But I told him that is okay but the other way I show him is to make sure he is safe, that he has opportunities, that he has medicine that keeps his body and his kidney safe. I explain that for years I have made sure that he had everything he needed, including dialysis and a kidney.

He quieted down a bit and went to sleep. And is resting still.

And so we will start again tomorrow.

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.

Cheryl,

Two months already? Well, I’m just saying that because that is what people say, but really, it feels every bit of two months.

Your kidney is working fabulously. It’s a persnickity thing though – really likes water. Thank goodness your kidney went to Quinn because she loves the h2o. We are so very lucky indeed.

I’m still a little stunned it all went so well. I’d worked myself up into a tizzy that since Gage’s kidney transplant went so smooth that we would have problems with Quinn’s new kidney. I think it’s just the coping mechanisim for me – expect the worst and be excited when it works.

Thank you for your kidney. For the risk you faced while offering a the chance for Quinny B. to live off dialysis. Having survived dialysis with Gage I know the impact Quinn would have faced. While I am sure she will need dialysis some time during her life to survive, but I am very grateful she doesn’t face it right now, while she is 8 and in 2nd grade.

Today, she played dolls, stayed in her PJs nearly all day, she ate anything she wanted (the formerly restricted banana!) and played made up games with Gage. She didn’t have to leave for dialysis or stop what she was doing to get hooked up to a machine live. I’m eternally grateful for her ability to just live.

Love you and your gently used, mostly behaving kidney,

Quinnlin’s Momma

Sometimes when I am so focused on Gage being in all his Gageness with behavior plans and school monitoring and appointments from psychology to psychiatrists mixed in with some do-it-yourself parenting/kid analysis books it’s hard to remember there are some great things about Gage. Truly wonderful, splendid things about the boy with unusually curly hair.

• Gage is inquisitive.
• He’s also funny.
• He is smart, smart, smart.
• He is so smart that he will always find the loophole.
• He can be sweet to his sister.
• He has an incredible smile.
• Gage marches to his own bongo set, which can be refreshing.
• He is extremely limber when climbing trees and rocks. No fear. (honestly, this is both good and bad)
• He is resilient.
• He loves animals.
• If he’s your friend, he’s always your friend.
• Gage remembers a lot about some very interesting things.
• He can fix things and put things together. Door knob installation? He’s TEN! Yes. That’s just one example.
• He protects Quinn and other younger kids from danger.

I appreciate the few people that see Gage the way I do. Certainly his teachers. A few friends of his (and their parents). His cousin Andrew. The immediate family. Gage’s circle is pretty small. But we’re a powerful one.

Jody…Jody!

Thirty-two months today? Just over 2 1/2 years ago our families embarked on a kidney transplant for our boy. I didn’t know what it would feel like to be 2 1/2 years out, after our other child’s transplant. And now that we are here I’m just as grateful for your kidney as I was the day we knew the transplant surgery worked.

I can’t imagine him spending one more day on dialysis, even though we know kids who still are staying alive with the help of a machine. I’ve heard from teenagers some details about kidney failure and how not only is it physically hard but cognitively, and emotionally as well.

But you have changed all of that. And I am eternally grateful.

Thank you for your sacrifice and your love. And your kidney. The kidney that doesn’t mind a boy who doesn’t drink all that much water. We are so, so lucky.

Love,

Gage’s grateful, tired mom.

Looking back at a trip for a little boy who’d survived near death from lack of kidney function, dialysis, infections, a mysteriously bad surgery, a miraculous kidney transplant, debilitating depression and suicidal thoughts.

I’m thankful for many things, but today I’m particularly thankful for kidney donors and for healthy enough little bodies able to receive their gifts.

Happy Thanksgiving from our crazy home to yours.

The scene: Quinn is brushing her teeth, Gage is told to go brush teeth and does something like looks at Quinn or sticks out his tongue or he waves his hand in front of her face.

She screams.

Julian: “Quinn you don’t to do that.”

Quinn: “Well you do it!”

Me, hysterically laughing.

Julian: “Well, that’s different!”

Gage: “How is it different?”

Julian: “It just is! And stay out of it!”

Julian, to me: “You are not helping.”

Me: “You are on your own.”

It’s most apparent during a conference that includes 3 of Gage’s teachers, us, and a psychologist (behaviorist) that we paid to be there, that Gage is watched. He is watched very closely. I’d venture to say that he is the most watched child in the school and for good reason.

But I have to say sometimes it gets old; hearing about all of his antics. From school we have daily verbal reports, nearly daily emails, and daily written reports. From people (friends) who know Gage and us keep on eye on him as well and they often report back days later that they saw him doing this or that. From (judgmental) people we see their looks, overhear them talking to or about Gage and sometimes it is warranted and sometimes it is not. But he has the reputation and so it’s part of raising Gage.

Accepting that your child is behaviorally challenging is hard, hard. Day after day we hear how our child is disruptive, disrespectful and oppositional. I’ve learned to accept it because that is what I have to do, but hearing all the time how disappointed people are in him and shocked by him is well, hard.

It’s also unavoidable if we ever have a chance to get a hold of something that works. We need to know and so we encourage an open dialogue with people who are respectful and care about our son and family. But in doing so, I am ultra aware of people who are judgmental.

Perfect parents. The ones with perfect children who naturally think that it is parenting. I can read you – when you think he should do this and we should do that. I can tell. It does not get by me, in case you didn’t know.

And for those people that offer Gage love and concern, including his incredibly compassionate and loving teachers, thank you. For those that offer gentle correction and a sympathetic ear, to those that offer him opportunities for friendship with your children – even encourage it – I so appreciate you. There aren’t many people who do and you should know how truly unique you are. Maybe collectively all the work and love and compassion will pay off.

Get her this. Well, actually, if it weren’t so pink I bet Gage would make some. He was very intrigued.

Really. The Gourmet Girl Candy Jewel Factory. Quinn had seen this on TV and been begging for it for a long time. I also got her the Ring Maker. We’ve not made a ring yet, but we made two necklaces. Oh my, how she loved it. It was easy. And she squealed in delight. Saying, “I can’t believe we just made this!” I have no idea if it will last past making the two necklaces we made today but it sure was fun. (Candy pellets melt into molds with sprinkles melted by a light bulb.). I see that the ring maker doesn’t have a melting contraption so I don’t know if we use the melter thingy for the ring.

We declared that we will make it all during winter break!

And also, I was not paid or asked to tell you this!

This is how it went down.

1. I shopped yesterday when Quinn was at a friend’s house for the afternoon (thanks Sue and Jessie!)
2. I realized that the cute colorable tote bags I wanted for the girls was not available (crap!) and so I decided to MAKE 20 canvas bags saving nearly $70. Took three hours and finished them by 11:30am today.
3. Ran to the grocery and dollar store for last minute items.
4. Cleaned.
5. 13 girls (of the 20 we invited) came. I wasn’t as tight on invites and RSVPs because some I did verbal. Each day I would remember who I didn’t invite. And with the Walk for PKD last Sunday I’d put of ALL planning for the party until yesterday. This approach doesn’t usually work for me. But it all got done.
6. The girls screamed and screeched loudly upon arrival. It was very loud.
7. Canvas bags were a hit.  We colored them with fabric markers and they were the gift bags the girls took home.
8. We made books and did a round the table sort of thing – so each girl drew or wrote in every one’s book. The concept was lost on some kids and they were upset the story they envisioned wasn’t carried out. But most of them were happy.
9. We also made bracelets so each girl has a wooden bracelet with a charm and two colored beads. They were very happy to make these.
10. They ate pizza after the book making and before the bracelet making.
11. But it all took longer and I sent three parents away for 30-45 minutes so we could do giant cookie and ice cream (Quinn wanted to offer three choices of ice cream)
12. We didn’t get to make the door hangers but I put one each in their canvas totes. Along with pixie sticks and jolly ranchers – Q’s favs. Also a carabiner and note pad and gel pens – very good deals at dollar store.
13. Only a couple of injuries. One fall and one head banged on a ceiling fan off of the bunk bed.
14. Many people did what we asked and brought presents for Children’s but also many gifts for QB.
15. We gave Quinn a candy jewelry maker. Oh man was she happy. We can’t want to make edible jewelry!
16. Gage went to Grandma and Grandpa’s house and played with their dogs – and got a (probable) black eye.
17. Yeah, should probably tell all the parents I am sorry for the tattoos. Pink skulls with bows and biker hearts and such. Sorry for the ones especially on the face.
18. Surprising the kids with cookie cake in their lunches Monday.
19. Quinn declared it a great party saying, “Thank you Mommy, I had SO MUCH FUN!” and quickly adding, “It was loud a lot.” (messes with an overly sensitive to noise girl)
20. Such nice presents people gave her, too. Which completely wasn’t needed because EVERYONE GAVE HER STUFF FOR TRANSPLANT. More thank you notes to write.
21. Am exhausted and going to bed before midnight. Which is insane for me, but will make people who love me happy.
22. I’d highly recommend an arts and crafts party for girls. They all seemed interested and engaged and I think they went home happy. Maybe one day in my next life I will run a kid’s party business. So much fun!