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)

A fellow PKD Foundation Board of Trustees member…and my friend, Bill. He’s as passionate about fighting PKD as he is about his wife, Victoria and the impending birth of his new baby, which is saying something.

And now, he’s Kenny. And he’s a Rock Star.

See Kenny the Kidney in Action

Jody,

Twenty-eight months and we’re still over here peeing yellow pee and whatnot.

Your kidney, which we still adore, by the way, is still kicking. Because if it weren’t doing what it needed to do right now, I would completely lose my mind. Like I would need a few days of peace and quiet that only a spare room with padded walls could offer.

So, when all of this started we’d just found out and you sent me the email asking, “Hey, do you have a donor packet?” and I was all in your face typing away at the computer yelling, “FOR YOU? A PACKET FOR YOU? LIKE YOU, YOU? SERIOUSLY?”

That was way back when before your son was entering college and your daughter was thinking about college. Times have changed, right? For all of us. Life always moves on.

As we face Quinn’s transplant I am finding that I am reliving a lot of the emotions I had back then. Back then when 4 friends offered to help my boy, who so badly needed something I couldn’t offer him. I’m remembering how special it was for our families to grow close and how I watched in awe of your generous spirit. And the fact that you are kind of squeamish really speaks to how committed you were to my boy.

Happy Kidneyversary. Before you know it, we’ll be celebrating 3 years. I hope you have a fabulous day. As it turns out, we’re headed to another therapist’s office to talk about our smart, rambunctious, wild, sad, depressed, cute boy. And by ours, I mean mine and yours.

Much love to you and for your kidney,

Julia (Gage’s tired, grateful mom)

Over the years as I’ve been raising the kids I’ve heard people give multitudes of advice. I’m not talking about the mom-to-mom advice about diapers, co-sleeping, tummy aches or fevers, because as moms, don’t we all need that?

I’m talking about the people who’ve said I should treat my (sick) kids normal. Just like any other (well) kid.

I hate to tell you this and shatter your belief that if we just act normal, we will be normal, but really, it’s not possible. There is nothing normal about what my kids have medically endured in their short lives. So we can’t really just act normal.

We act a normal that is our own. We mix (what we think are) the normal happenings in life with the (what we know are) not-so-normal happenings in life and we hope we land somewhere in the middle at averagely untypical.

It’s not normal for a child to endure hundreds of therapy appointments at the cost of normal playtime with peers.

It’s not normal for a child to be held down by their parents for medical test after test (or parent inflicted shots) and for them to have to switch modes to think of the parent as a comforter.

It’s not normal for 9 year-old child to have PTSD or severe depression that causes suicidal tendencies, in lieu of playing outside for 7 months.

It’s not normal for a child to swallow up to 20 pills/liquid medications per day at meal times, where they barely want to put anything else in their mouth.

It’s not normal for a child to be so shut down because of their experiences that they can’t talk, can’t sleep, can’t function typically in a normal world.

It’s not normal for a child to talk about the time they almost died or that a surgery could lead to death nor is it normal for a child to hear a parent calmly talk about a procedure that sounds scary in the simplest terms.

It’s not normal for a child to have to endure time away from their life – their friends and family and fun for crying out loud – for treatments that keeps them alive.

It’s not normal for a child to endure their own suffering only to realize that their sibling faces the same fate.

So the advice “Just treat them as normal.” can’t apply to us. While we certainly interject normalcy when possible, their lives aren’t normal. And I know that some people when they say it to me mean it from a place of concern and caring, hoping to help. And that kind of advice I’ll always listen to with the appreciation that it comes from a loving place. But every so often there is someone who says it from a place of know-it-allness, and frankly, it gets old. I mean it’s not as if I haven’t thought of this myself. Or wished for it many times.

Normal is not as easy as it looks. And that’s all I have to say about that.

This is about as happy as Gage can be right now. He’d found the grasshopper-not-jumpy-thirsty-friend and carried it around the pool one night (he then cared for it for 3 days then released it on his own, still alive I might add). Because at the pool he doesn’t like to swim. I think because he won’t let himself have much fun these days.

We’re interviewing a new therapist on Monday (Hey Just Me – it’s the cognitive psychologist) – flaky doc guy is OUT. I hate to hang so much hope on the new guy, but really we are. Because our boy, he needs for us to believe.

Noticing bump on Julian’s head, Gage says:

“What? Did you go bike riding again?”

————–

Julian, finding and giving Sally (Gage’s stuffed cat) to worried Gage

Gage: “I guess it didn’t matter to you that Sally was lonely because you left your bear from when you were little.”

Since Gage found Julian’s childhood bear, he’s been very concerned and frankly, a little judgmental about Julian abandoning said bear in the family’s childhood home.

————–

Quinn: “When am I going to get my kidney?”

Me: “As soon as we find out if all the doctors can get together.”

Quinn, looking worried: “How many does it take?”

————–

Me: “The pool is closed…Code Brown.”

Gage: “Then why don’t they ever do a Code Yellow for all the pee?”

————-

Me: “Gage, we cannot have food in our bedrooms and especially our beds! If you are hungry, go downstairs and eat anything from the snack bowl.”

Gage: “Sometimes I get hungry when I am in bed and I do not want to leave it.”

————–

Quinn, after 3 teeth are pulled, screaming/screeching: “Is there blood? IS THERE BLOOD?” Cause if I SEE blood it will hurt more!”

————–

I’ve been printing out and organizing pictures and mementos for scrapbooking over the last week. I’d neglected this whole thing since Gage’s transplant, so I am about 2 years behind. I’d put it off because the last two years has been no walk in the park. Certainly Gage not being on dialysis has been helpful, but there are still a lot of appointments after transplant and then we had the whole PTSD/depression thing with Gage – which has impacted us as a family for a year this month.

For one year.

I had to let that sink in a little bit over the weekend while I realized that Gage has struggled emotionally. He is not happy. He is nearly void of all joy. And it breaks my heart at least once a day.

“We’re as happy as our saddest child, aren’t we?”

As I was pulling together the photos online to order for 2007 and organizing them I realized how happy Gage was during this time…all the way through his transplant and recovery. For the rest of the year in 2007 he had a lot of joy. Tonight I ordered 2008 photos and it is so clear when he began his downward spiral to sadness last summer. The 2008 photo below is one of the few pictures showing the happy Gage – March 08. So very clear when it happened.

2007, pre-transplant

2008 – 1 year post transplant

2009 – still sad, and oh, the body language is an outward manifestation of internal feelings.

At 9:30 we arrived at camp to pick the kids up after six days of relaxation and reflection missing them. Quinn was excited to see us and jumped off the bus to hug me. Gage was his usual self, not wanting to smile but he couldn’t help himself, even just a little.

The only question we asked was: “Do you want to go back next year?”

And they both said “Yes!”

The ramblings and observations in the car and when we got home…

• There is a horse named Sunny and Quinn rode him last year, too.
• There is a horse named Otis and Gage could wear crocs on him, because they are not really open toe.
• Quinn’s favorite activity was canoeing.
• Gage said he had friends in his cabin and his cabin mom, said he did pretty good, with a grin, implying that there were issues but they weren’t major.
• Not as major as the kid who had to go home two days early from camp as Gage explained, “for bad behavior…I couldn’t believe it.” Hello Pot, meet Kettle.
• Julian says, “As long as it wasn’t Gage being kicked out it was a successful week.”
• It was nice to see the kids dressed this year when they got home. Last year they put them in their pjs, did meds and cereal and got them home. (good lord those made some cute pictures)
• Gage told us many stories in the car on the way home, which was both unexpected and delightful.
• Gage told LONG stories in the car so Quinn would be annoyed because it wasn’t her turn to talk.
• Looks like most of Gage’s things made it home with the exception of his water blaster.
• Apparently a kid took Gage’s disposable camera and wasted all the pictures, for which he is a little bummed.
• Quinn’s best friends at camp are both named Sarah.
• They had a talent show one night and a counselor dressed up like Hannah Montana, which both kids couldn’t stop talking about. Quinn has decided she likes HM now.
• Gage fell asleep within two hours of being home. I’m assuming because lights were out at 11:00PM and up at 7:10am.
• Quinn DOES NOT want a sleeping bag next year.
• Gage’s counselor didn’t believe Gage had a 10lb blanket until he picked it up. He found this amusing.
• There were many stories about ghosts, one who used to make cookies for the kids at camp and a few more that involve some men who only come back to scare the little children. There was a fascinating one about if how you touch the dock from the boat the ghost will make your heart jump and you will feel it stop for three seconds and it will scare you.
• Quinn no longer wants to go to the bathroom alone. Something about spider webs.
• Even Gage was happy to get my letter with pictures. His favorite one I sent was a picture of Lucy.
• The kids and counselors in Gage’s cabin and Quinn’s cabin played tricks on each other each night.
• Quinn says both of the boys’ counselors are cute.
• Quinn and Gage both had “dates” for the western theme, last night camp dance. Quinn said she went with someone who didn’t have a date.
• Quinn liked that all the kids in her cabin had to take medicine.
• Gage apparently hit Quinn once during camp when both kid’s cabins were outside.
• Quinn was unhappy they didn’t eat a lot departure morning. “All they gave us was a little bowl of cereal, then we had to do clean up and then made us get on the bus. They wanted us to come home fast.”
• Quinn lost some of her hair stuff and was crying for a bit “I lose everything, all the time!” (tired anyone?) but we’ve assured her we can replace it all (Auntie Carol…more custom oil?).
• Since he’s been home, Gage installed his new door knob by himself. That’s pretty amazing for a 10 year old, right?

It’s good to have them home.

Secretly? I really did miss them, even though I enjoyed the down time.

Quinn and Gage left for camp on Sunday. Gage was indifferent, twice saying we were making him go but that he didn’t want to.

Quinn was nervous (again) but was glad to know that she might see Sarah. Last year Sarah had been on the bus when Quinn so nervously got on and I’d followed her to see if I could introduce her to anyone that might be encouraging about camp. I asked if anyone was in the same cabin as Quinn and Sarah gladly raised her hand and began to tell Quinn how wonderful camp was, how the previous year she’d been scared too, but how great it had all turned out.

So this year Quinn was excited to be going (until she sat on the bus for an hour waiting to leave) and to possibly see Sarah. Imagine my happiness to see Sarah walk in!

They became fast friends…

And walking to the bus! The kids return tomorrow…I do kind of miss them!

Regarding Gage from a mental health professional: “At some point how he is – this shut down person – will become a part of his personality permanently.” -  paraphrased

Besides my sad child wanting to die, I’d have to say that is right up there with one of the saddest realizations about your child. Sadly, this was already a realization before this doctor voiced it.

_______________________

For a while now we’ve been trying to figure out what our next step is with Gage and his mental health plan. We’ve made little strides in the last year in getting him to open up verbally with his emotions.

This past year our main goal was simply: Keep him alive.

That simple. While Gage never had a real plan to carry out killing himself, he sure did know that things like rope and knives could do it. We had him on suicide watch while we tried to get out of the crisis because of his impulsivity. He’s terribly impulsive. Like he does whatever and then never thinks about what happens. Never, ever thinks about the consequences. It’s exhausting to try to get in front of something he might do because he isn’t thinking about the outcome.

Our secondary goal was to stabilize his mental health so that we could start to deal with the other issues…like anger, rage (different than anger), depression, sadness (also different), shut down, destructiveness, impulsivity (which is also sometimes destructive), interaction with other people as a result of all of these things.

He’s seen regularly by a psychiatrist (every 2-3 weeks) and until summer he was seeing a play therapist (weekly). He attended group therapy with other boys (2 weeks worth) who deal with some of the same issues.

We are currently reevaluating the approach with Gage and this is what it entails…

• He’s angry and there isn’t a clear reason what is the trigger. Maybe it’s tied to Quinn’s impending transplant – it’s bringing up his own memories but alas, low vocabulary still.
• He’s behind still in school – been working with him this summer. He’s been reading here at home but we’ve not been as good about his times table, although we have worked on them a little bit.
• We’re looking at a psychologist (male) who deals with behavior – sometimes with kids and sometimes with parents. He’s not a play therapist, but a cognitive therapist. He’s been referred to us by a few people now so I suspect we will go that route. We have an intake interview scheduled for in a couple of weeks.
• We had been looking at, and “interviewed” a phycologist who came recommended as well, but honestly, he’s kind of flaky. We went in the office to tell him all about Gage for an hour (Ching! $150) and then he told us about the group therapy but we were still thinking he might be good for individual therapy. So we went back with Gage for an evaluation (Ching $300) and a 30 minute session with us. He didn’t remember the first visit a week earlier and didn’t read the file before he came in the office. He looked confused the entire appointment like he had never met me before. I still gave him the benefit of the doubt though. We signed Gage up for group therapy (the session he completed last week, Ching! $800) by moving schedules and changing sessions based on the psychologist’s recommendations. We pulled him out of a 3 day scouting camp (Ching! $160 non-refundable) with Julian only for the guy to call us 5 days before to say Gage may not work with the group. So we had to bring him back him to meet the session leader (she didn’t have any concerns at all) but still was a pain to deal with and it looks like he might run things by the seat-of-his-pants. I’m not feeling it with him as Gage’s counselor because of the flaky factor – I’ve got enough Flake in my life thankyouverymuch Crazy Man. The therapy group session I think was pretty good though.
• Deciding about the play therapy. It’s hard to determine if it was helpful or not – he was talking a little bit but there wasn’t any leaps and bounds or breakthroughs that we can tell. I’m warmer to the idea of play therapy than Julian because Gage is so hard to read. He’s very shut down. It’s hard to know if he’s formed a connection with Ms. Playwithme.
• Both a factor and not a factor – flaky psychologist is not covered on insurance ($150/hour) and cognitive psychologist is covered on insurance and is in the office with Gage’s psychiatrist. There isn’t anything we wouldn’t do/sell/sacrifice to pay for services that could help Gage.
• It’s hard to know which way to go. Do we stay with Play approach go with Flaky Doc who comes highly recommended, or try new therapy approach.
• Honestly Gage will not be engaged with any of the approaches because he is so closed off from his feelings.
• Personally the thought of dragging (some days literally) Gage to a mental health appointment is not appealing to me, not in the least. But I’m fairly certain (100%) that if we don’t do something he will not get better.
• For social interaction we will be stepping up mediated (by us) play dates with one or more kids to give Gage more real life experience. This is a daunting task for us because our life doesn’t lend to a lot of time to arrange and manage this – but it is necessary. So we will find a way to make it happen. This is where other families of kids Gage’s age could really help us out – by including Gage and reaching out to hm. We need inclusion, not exclusion. But that’s another post entirely.

So that’s what I’m grappling with today. The last couple of months it’s been Quinn’s transplant. And my nephew’s issues. But today it’s Gage. My complicated, sometimes charming, always sad, shut down, complicated boy.

I do love him fiercely and hope I am doing right by him. But that’s the thing – I can only know it’s the best I can do and from this I do get some comfort. But I can’t really know if it’s the best for him. And that fact brings on a whole other set of issues (we’re full of them around here, aren’t we?)  for me to work through personally.

So, how’s your summer going?