This is for my friends who do not mind looking at diseased kidneys.

Cheryl’s on top.

Obviously, Quinn’s on bottom.

Just a link for now. Because of Tina.

http://twitpic.com/jlzp3

If you are keeping up with where we are in Quinn’s transplant, here’s the low down…

• Happy to report that Quinn’s lead surgeon rearranged his schedule to meet us for a very EARLY (for me) greeting on pre-op day, reducing the need for an extra trip. Heard of a surgeon doing that before? I haven’t. Consider me stunned. Dr. L is going to need a better moniker than Dr. L….so help me name him.
• Quinn’s itching has increased to a point that is nearly unbearable. I am considering pulling her out of school a week or two before transplant and schooling her at home/homebound. Her teacher reports that she is scratching nearly all day and is very uncomfortable. I’d been hoping that school was enough of a distraction but I think it is so bad with a too high BUN (92) and she can’t ignore it – at school or even when she sleeps. This makes me really sad.
• Gage. That boy. Told Quinnlin he was fine with not being able to visit her in the hospital – because they have a 12 older policy through flu season.
• Quinnlin asked me today about her stomach being cut. “With what, Mamma?” Yeah, I had to tell her a scalpel – a small doctor knife. Face contortion and then a grin like she didn’t believe me.
• I need to do an entry about how people can help during transplant – many emails and calls are offers are coming in. I always think it’s a weird thing, telling people what we need. But obviously, I’ve gotten over that weirdness. Let the help begin.
• Secretly, I’m scared out of my mind about Quinn’s transplant. I am letting things keep me busy – work, Walk for PKD work, blogging, new business stuff, painting, etc. to keep me from having to deal with some hard emotions surrounding the fact that we are sending in our 2nd child to transplant. While the docs assure me that the odds are the same for Q as they were for G, I’m not buying it. Certainly, statistically, that makes us more susceptible to complications for Quinn right? I need a statistician to explain that to me.
• A local TV station is doing a story on Quinnlin’s transplant. There are currently a lot of story angles so I am not sure what direction she will go, but raising awareness about PKD is always a good thing. We’ve been talking Twitter! Docs are planning to give me frequent Tweetable quotes. So if you are on Twitter – add me for updates day before and day of (www.twiter.com/juliaroberts1). Guess I should unhook that from facebook, huh? Am thinking my friends don’t want 100 updates that day.
• Speaking of that…how do I upload pics to Twitter. I realize you know that I can read, but I haven’t and I have been on Twitter for some time and still haven’t dug to figure it out – and I probably am not doing to do it now.
• This is a picture of Quinn with our Child Life Specialist, Ginger showing Quinnlin the basics of what will happen on a teaching doll – cause she is a surgery novice! Oh how we love Ginger.

I am sure there is more, but I have to go to sleep! I know! Crazy! Cause it’s before midnight. Which I never do. But my brain is refried kidneys. Must sleep.

Have to be fresh for some of my Village who are showing up tomorrow to start on the PreTX To Do list. Holy crap, do I love them right now. A lot.

I swear I have two children. If you have looked at my last posts on here, my tweets (juliaroberts1 on Twitter), or Facebook then you might be thinking I have one child, when in fact I have TWO!

She’s needy too, you know!

The girl is about to have a kidney transplant. Can you believe that? I can’t. But then I can. But then I can’t. BECAUSE THEY ARE REMOVING AN ORGAN FROM A FRIEND AND PUTTING IT INTO HER. And they expect it to work. They expect her to just walk about with another person’s kidney inside of her producing good urine. I know. Insane, right? And then I think to myself, “Oh wait, you’ve already seen this work before.”

Sometimes when I am typing out things like the above I have a glimpse. A glimpse of someone else with this life. Someone else must be raising these two (extra) needy kids. But then I realize it is me and the pressure sinks in and it feels heavy.

Quinnlin is extra needy right now as she is not feeling so well. She’s terribly itchy (honestly, little marks all over her body) and she’s not sleeping well and she can’t concentrate for long periods of time because of it. She’s crabby because she’s not sleeping well. She doesn’t feel well and this impedes her ability to think clearly when she is, say, communicating a need. She yells, she whines. She goes on and on. She contorts her body to make her point more dramatically. It’s different than your typical needy Quinn – to full on needy Quinn and it’s exhausting.

But each time she does it we talk slowly and softly and we say let’s all calm down. And she catches her breath and she remembers that somewhere inside of her resides a little girl with the sense to calm down and think things through a little bit. She’s thirsty all the time and she is often nauseous. All of this makes mommy compassion and patience  quite handy and mandatory.

For the last 18+ months Gage was in a downward spiral, as we all were being in the same family with him. We’ve been in chaos with him trying to figure out how best to help him. Therapy. Drugs. Walking on eggshells. Loving him unconditionally.

That’s not a statement about our commitment, it’s a statement of what we’ve been doing in the face of turmoil. Nearly a year ago we embarked on a search for a doctor that would deal with prescribing anti-depressants for a 9 year old, post-transplant suicidal boy. Most days I cried about not being able to help him fast enough. Literally NO ONE had a sense of urgency like we did. When we did find a doctor (psychiatrist) she moved cautiously slow in the evaluation process. It was nearly two months before he started an anti-depressant and another month before we saw relief of the suicidal tendencies.

We (and that includes the team of educators) held him together with sheer will, resiliency (the team’s), tenacity and prayers. His behavior was an outward manifestation of inward feelings of despair and hopelessness. He didn’t want to see friends, go outside, play or engage with the family. He was filled with rage most days and everyone knew it.

Often throughout the ordeal we’ve heard from Gage heartbreaking statements of his state-of-mind, like:

“I don’t know why I am the way I am.”

“Everyone hates me.”

“I want to die. Why don’t you stick a knife in me.”

“I’m ugly and stupid. I’m an idiot and I’ve always been an idiot.”

“That is why you hate me.”

About 6 weeks (?) ago I asked the psychiatrist to up the anti-depressant. I’d been thinking while he was better, he was not happy. He was going through the motions because we were forcing him to. Life? He could have taken it or left it - to him it did not matter that he was on the planet. Sit with that for a second.

Then think to yourself that nothing mattered. No joy. No happiness. Yes, it’s true, he didn’t want to kill himself or have us kill him, but he had absolutely no joy.

But since the med change we’ve seen glimpses of the old Gage. The one who loves nature. The one who loves to play tricks (that aren’t dangerous), the one who likes to play games. The one who smiles.

I can’t tell you how hard it is to write that sentence without crying. Because for the first time, too, we think we might be on the right track. I know we have a long way to go, because depression, PTSD and anxiety are chronic conditions, just like PKD. For PKD a transplant is a treatment, not a cure. For depression, meds are a treatment, not a cure. We still have to work through the emotional aspects of why he is depressed and anxious. So we’re still a long way from where we he needs to be.

But for the first time in a very long time, Gage’s smile is from within and that is enough for today.

We are marking month 29 of Jody’s kidney donation to my little, crazy, challenging, curly-headed, funny boy. It seems that his spirit might be lining up with his happy kidney. The kidney has found a home in Gage for 2 1/2  years and for that we are grateful. Not all new kidneys do this well. Not everyone keeps their new kidneys for 2 1/2 year – we know this.

But today we celebrate that Gage has kidney function. I shutter to think about what it might have been like if we had lost the graft. If Gage had to deal with that along with trying to just hold himself together to make it through a day.

Thanks Jody. Your kidney ROCKS. And we think you are pretty special, too.

A New Baby

Our lives change

In a moment

We are scared

How can this be?

Death?

I pray for healing

Settle for alive

In clarity I see hope

Intertwined with fear

Always

Suspension

Between certainty and uncertainty

Difficult balance

A gaping hole of grief

What should have been

So strong. And brave

They say

Essential

They deserve it

Or an integral part of them will be lost

When there is sadness

For them

Part of my soul leaves

From me

Written a long time ago by me.

The first day of school we are always hopeful. We’re hopeful Gage won’t need serious intervention with behavior and increased need for support through Special Ed. We’re hopeful that he will develop friendships. We’re hopeful it won’t be as challenging as past years.

Today is no exception.

Saturday I had breakfast with Gage’s teacher. She’d known during the summer that Gage was in her class and she knew he had problems last year and well, she just wanted to see how she could support him and how best to work with him. When I tell you the entire school thinks this way in regards to Gage and Quinn I know you will not believe me. But they do. Hence the crying at registration.

Quinn’s teacher said that she knew what was going on with Quinn because she reads the blog (Hi Mrs. W) but she doesn’t comment. She’s ready to support Quinn through her year of changes as she goes from a kidney patient to a kidney recipient. There’s a lot of difference in case you didn’t know.

So, here are pics from this morning…you will note that Gage carried Sally (Ugly Orange Kitty) in with him (his teacher said it was fine and as part of an assignment this week she was going to have all the kids bring one in to help Gage) as he proudly had her in his arms. Asked if he wanted to put her in his backpack, he replied, “No, I don’t care what other people think.”

He did walk right in and sit down and start doing a worksheet. He’s seated (on purpose) between two friends who accept him like he is and even like him a lot. Quinn was thrilled to walk into her classroom except her backpack was heavy with supplies and I had to hold the hanging loop while she insisted she wear it on her back.

The picture of Gage looking up was him showing me the moon. Declaring it too early to be awake. But Quinn did come out of the bathroom after brushing her teeth saying, “I look cute this morning.”

Another listed update but there are some items that have moved to the in progress column. Too tired to write with any real thoughtful entry.

- Good progress on something related to the nephew.

- Bad that I have also decided we need to rework two rooms in the house and one involves painting.

- Unbelievably good that Gage got the teacher he did. She called over the summer to check in, she gave Gage a private tour of his class yesterday, she says the communication between us is important, and get this: she wants to have breakfast with just me tomorrow to really talk about Gage and how she might better work with him. Have you EVER heard of that in your life? Really? Because I didn’t think it was possible to think I could get a higher opinion of her BEFORE school started, but I do. It’s kind of mind-boggling actually.

- Good that some things have been decided on for our Walk for PKD in Atlanta. This weekend I need to get packages ready for sponsorships. Usually, they’d be out by now, but we’ve been firming up details.

- Maybe good…it might be my imagination – in fact, I am sure it – but I think Gage might seem a little brighter (med change?).

- Bad that the kids need to get labs today Monday. And I realized that none of Quinn’s shorts pass the “fingertip” rule of length. So shopping sometime this weekend is in order.

- Bad that Julian’s uncle died yesterday. We went to the wake tonight. Julian thought we should hire a sitter and I thought  not, so we are bringing the kids. First, if we have to have a talk about death I’m relieved to know it is about a man who lead a full, long life and is in his 80s. Death is a part of life. And while it is sad, it’s not a tragic event – he died peacefully at home and so we went and we talked about him dying. Life lesson.

- I”m tired. So after I pick up a bit I’m going to go to bed!

In a another dimension (my fractured mind) exists my dream clinic. It’s a clinic that works with family to help the whole child.

The body, the mind and the spirit.

Currently we see the transplant clinic for only the kidney and it’s a fine job they do. They monitor kidney function, they return calls promptly with answers regarding the kidneys and their function, and they do a good job getting answers to question that could possibly impact kidney function. And they follow up quickly, which is always helpful and appreciated. I think the staff is also pretty good at keeping our stories straight – mostly everyone there knows who your kid is and where they are in the kidney transplant process every time you see them. It’s pretty impressive actually – a finely tuned machine.

But here’s the thing; all the kids I know are more than the kidneys. Or livers. Or cancer. Or whatever rare disorder. Kids come along with teeth, eyes, growing bodies, cuts and scrapes, fevers, allergies, therapy needs, depression, ADHD, broken and sprained bones. Every kid needs the basics of pediatric care and some sick kids need a multidisciplinary approach to their unique (us!) situation.

I don’t remember what it was like to work with only one pediatrician office. If you have a healthy kids, I know it’s probably difficult to imagine what it is like to have to work with 4 or 7 different doctors for meds, appointments, testing or followup but it’s a reality for all families that have a sick child (or two).

As an example of how a single disciplinary approach doesn’t help the whole child, imagine if you will, the following… a child with a life-threatening condition ends up with depression and the child starts talking a lot about death, then it escalates to wanting to die, then wanting to kill themselves. The parent gets pretty aggressive about finding help for the child and ends up with a play therapist. The play therapist, with a lot of conviction, believes that the child has PTSD and severe depression. So the parent talks to a lot of people that won’t offer antidepressants because they didn’t feel comfortable taking responsibility (should also point out they don’t offer referrals except to say check the insurance list); they include a pediatrician (who asks her partner doctors) and a nephrologist or two and no one will help. Even the clinic psychologist didn’t help, only to tell the family to check with a previous behaviorist they worked with for a referral. The lack of assistance led the family to call a doctor in another state, who referred the mom to the head of child psychiatry the other state’s children’s hospital who called the chief of psychiatry across the street from clinic who referred the family to someone that led to an appointment within a week. I’m not lying when I tell you that the family went through another state’s doctor and two department chiefs to get to the a referral to the center ACROSS THE STREET from the clinic which is an affiliated hospital.

That is our story. Gage’s story. A story of a child and a family in crisis who spent too much time finding help. Too. Much. Time.

Wouldn’t it be completely forward-thinking to have a sick kid clinic that embraced the whole child? Wouldn’t it be revolutionary for kids that go regularly to a clinic anyway to have the option to get immunized at their clinic visits? To deal with regular pediatric issues. Or be able to get a flu shot? Or have their eye exams? Or regular dental care?

I am sure there are many issues to navigate to make a clinic that serves the whole child possible. But you know what? They remove organs from living people and place them into sick people to help them live. You can’t tell me that a whole child – body, mind and spirit - focused center isn’t possible.

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.