I’d assumed Jody’s and Gage’s 27 month kidneyversary was recognized on blog because I wrote a post before I went to the PKD Convention and I set it up to publish while I was gone - on the 27th of course. Sometime while I was gone I thought I saw the post or a comment come through and now I don’t see it. So did I delete it? Did the kidney gods not like me celebrating so much by removing the post entirely? And did those same gods make Gage’s creatintine rise just a little bit? You know, to put me in my place?

I have no idea. But I did want to thank Jody for her kidney. Gage says he doesn’t feel it anymore (for about a year he said it felt strange to him) which I see as a good sign.

Thanks again for your unselfishness and act of courage to help my son. Thanks for helping him live off of a machine (cause that really sucked) and for giving him energy and yellow pee and an appetite!

Love you and that rocking kidney!

When you are caring for a couple of sick kids it means you have to be in front of a lot of health care professionals. Doctors, nurses, assistants, insurance staff/accounting, technicians, clerks. You come into contact with a lot of people and a lot of personalities.

On any given week we’ll see 15-20 people in the regular care of Gage and Quinn. When the situation calls for more care (um, like, you know, a KIDNEY TRANSPLANT) there are just more people (and paper work and tests and results) to navigate and manage. As in life, you don’t click with everyone you interact with on a daily basis. People rub you the wrong way (you rub people the wrong way) and they are dismissive and insensitive. Some are dismissive in a way that is condescending. Which can be both infuriating and eye-opening. Because that probably isn’t going to change on the 2nd, 3rd or 20th visit so it’s best just to find a way to deal.

What I want for one of my kids doesn’t always line up with what their health care providers believe is best for them. And that’s okay. But it’s not the last word.

That’s why they invented The Second Opinion.

It doesn’t matter what the issue is; it is your business, your right and your responsibility to get your questions answered. That is why there is a 2nd opinion.

Getting along with everyone, everyday just isn’t possible, you know? Sometimes you can’t change providers; the options are limited in your area, your hospital or specialty and you have to work with who you’ve got. It goes back to intuition. Follow your intuition. Always.

For my kids, it’s my responsibility to make sure I follow my intuition no matter who is providing care - from front office to doctor. Sometimes I have to be creative in managing all the situations. Sometimes it is okay and right to push back. And you know what happens? People get pissed off. And you know what else? I’m okay with that. Because when I’m tucking my kiddos in bed, never, anywhere in my thinking about the day behind us is one thought about who I might have pissed off while being their advocate.

But it’s not just the kidneys around here. We’ve got mounds of paperwork, new doctor appointments, old doctor appointments, behavior mod to implement and well, we then have living with Gage, which has it’s own set of newness (not always good newness) everyday.

And then it doesn’t. It gets old, too.

- We found a group therapy situation for Gage that we’re going to try. It’s for boys, 3 hours a day, for 10 days. 6 boys. “Group Camp” we’re calling it. It’s to work with social interaction, boundaries, expression of needs in play/communication. We just decided we needed to mix it up a bit. The cost is $860 for the session and it is out-of-pocket.

- Gage has been doing better since school is out. For Gage better means he’s just Less Gage Amped Up. He’s still a challenge, but he’s less of a challenge. He was downright nice for my birthday even. He gave me a card, too, that didn’t involve a picture of him on  a train running me over.

- I realized I never really backtracked and talked about Gage’s weighted blanket. I bought one from www.beanblanket.com and he loves it. I paid, with shipping, $100. It’s like the medium size, so less than a twin bed but it fits him perfectly and stays on him all night. I am sure in about a year it won’t. This blanket weighs 10lbs and goes where Gage sleeps. Family or boy scout camping? Yup. Traveling to see the nephew in Nashvegas? There too. A reader (JM can I out  you?) pointed me in the direction of it this year because of Gage’s sleeping troubles and I’m so grateful. He does sleep noticeably better. And in case you think we are lacking wildly the discipline of a good sleeping schedule, you’d be wrong. We’re all about the routine around here. Same time, same routine, same toothbrush, same prayer. The blanket helps settle him. Actually, we should all have one.

- Gage still is hanging on to Boy Scouts. He’s not too thrilled about many things these days, but doesn’t fight it. Last week for the most part he played alone in the corner of the yard when 30 other kids were running around but he didn’t seem unhappy. I think the alone playing is many things, self confidence, too much stimulation and that was his self soothing, one way to stay out of trouble.

- Gage is struggling with piano. Not the playing part but the going to lessons and practicing part. Normal or not? I sense many kids don’t want to practice, but we’re seeing meltdowns because he is frustrated when he makes a mistake. We can’t seem to help him understand that practicing is all about making the mistakes until you learn. Last night I found the three piano recitals he’d done and he was impressed and proud of what he could play now vs. Mary Had a Little Lamb on the first recital a year ago. So sad the level of his low self worth. Hearth breaking.

- We love Gage’s rock climbing instructor. She’s a trained Outward Bound and deals with special needs kids, apparently particularly boys with low self-esteem. Gage is quite a good rock climber and without our prompting she told him the other day that during camp this summer she’s going to need help with the other kids because he knows a lot more then them about tying the knots. Did I mention he’s a little like Rain Man with knots? We just bought him his very own harness (on sale) and we’re about to get him climbing shoes.

- Gage’s kidney function is great. In our desperation a couple of weeks ago, we had the thought (and one of his teachers asked about it) that even his kidney might be failing. It’s not, much to our pleasure. Because really, that would be too much. Numbers are stable, thank God.

- Because all of the immunosuppressants he is on his body can’t fight warts and one of his knees is covered with them. We’d been going almost monthly to the dermatologist to fight them with freezing but about a month ago he kind of lost it in the office and we had to hold him down to do the procedure (hate, hate it) through screams, tears, protests, so I asked the doctor (in front of Gage) if we could fight it topically for a while to keep them in check and she researched a new topical drug (she’s always concerned about body absorption because of the new kidney) and she found one that we had to special order - for $70 for one small syringe - and much to my delight it is working. Three treatments and they are much better. I think it we keep it up this may actually work. This is one small victory for all of us - it shows that when possible, he has a voice about treatment and that as his mom, I’ll keep looking for new ways for treatments as his advocate.

- We’d recently upped his anti-depressant. I have no idea if it is helping or if the end of school had an impact, or his relief at passing 3rd grade is the factor, but he seems a little bit better. Because there is so much with Gage (mental, physical, developmental) it’s always hard to judge the impact of behavior mod or meds.

My boy is complicated. But he has a great smile (when he occasionally does it) and he’s smart and I love him. One day I hope we’ll see the real Gage again. Because it’s been a very long time.

And I miss him.

We are in crisis mode around here. Gage has been having trouble and we are trying to figure out the game plan for the next however long. Until the next time we need a new game plan.

Gage is complicated. He’s got issues on top of issues and we are constantly sorting through them all. Gage has had developmental problems since about 8 months old. For nearly 10 years he’s been chasing after a goal. Always behind. Goal after goal. For 10 years now he’s been evaluated, tested, pushed and pushed. We’ve fought for nearly every step walked, every letter on the page, every word pronounced properly, every single item learned. We, as his parents have fought hard for his learning. But he had to do the work.

And then on top of that? He had to fight to live. Years of testing and monitoring and medication. Years of his body giving up on him and feeling sick. For an unknown amount of time he couldn’t concentrate on much so he wasn’t able to learn as he did before and he struggled more. Then came complete kidney failure, near death to dialysis and treatment until a transplant, for which he didn’t have the maturity to deal with the emotional component.

It’s no wonder he’s having trouble coping with life. The health and developmental odds haven’t been all that kind to Gage and he’s working through the issues associated with the hand he’s been dealt. We all are.

We navigate each new problem with a best known solution at the time. I am constantly trying to figure out how to deal with the new problem that arises from Gage’s behavior. That includes just about every behavior plan on the planet, a couple of meds and an array of tactics that involve more discussions and tears and research than I care to recall right now.

Gage is the way he is because he just is. He’s the way he is because of many things. A mixture of how we parent. A mixture of the experiences he’s had in his 10 short years. So when people judge me and then email me about my parenting techniques, I get a little pissed off.

I’m extremely sensitive about parenting Gage. I sometimes blame myself, but really, that’s just because that’s what parents do. I don’t really think that I’ve messed Gage up with how I parent. Gage is just Gage. It’s my job to always try to reach the real Gage and give him a voice.

Do I do things wrong sometimes? Sure. Do I second guess a situation with Gage and his behavior? Of course, what parent doesn’t? But I know Gage the best. Not you. So you have no right to tell me that Gage is lacking discipline. For starters, it’s not true, but the bigger problem is you have no idea what is involved in parenting this child and what works and what doesn’t.

So shut the hell up.

Since Gage’s mental health decline last year it’s been difficult to watch him not enjoy life. I mean nothing. Not friends, not outside, not playing with toys, nothing. He didn’t go outside for months beside to school and commitments. He quit climbing trees. He quit playing in the dirt and the creek behind our house.

While he’s gone from the crisis stage of wanting to kill himself - and trust me, we’re happy about that - we are a long way from him being joyful. Truly happy.

Jody and her family came over tonight for dinner and we looked through Gage’s photo scrapbooks. We both kept noticing photo after photo Gage’s genuine smile. Sadly, we were only looking at photos before his depression and PTSD. Occasionally and only if I am really looking can I see the happy boy from the past. He’s so different. I hope one day we can see the boy more than occasionally. I hope, I hope.

Gage’s attitude isn’t stellar for much. Except maybe taking apart a broken electronic or some good tree climbing. So, I’d been telling Gage that Jody was coming over, trying to get him to warm up to the idea. Cause he’s not necessarily warm around anyone these days and I was hoping he would be with her. Right before they arrived he ran upstairs and came back down and wrapped up in a blanket in the chair, which he often does. I said something to him and he leaned over the chair and lifted the blanket to show me The Shirt. The shirt we gave him the morning that Jody came to see Gage the first time since his transplant. It says I (heart) My Kidney Donor. He smiled briefly. I made a big deal about how nice and thoughtful it was of him and that I knew Ms. Jody would love that he had it on. Bigger than wearing the shirt was that he actually had the thought to put it on.

Gage just doesn’t do thoughtful things. He just doesn’t. Or if he does, they are so few and far between that I forget them. So every once in a while he does something like this and I think to myself that he just might be okay. He might get better one day and live joyfully again.

I hope. I hope.

Jody,

Two years? Already?

Two years ago today, you and Gage (with the love and support of hundreds of people) were both wheeled into operating rooms across the street from each other and began what was Gage’s next chapter.

I could have never guessed that 7 years ago when Gage was diagnosed with PKD that he would end of getting a kidney from someone from church…you! The journey to that transplant (and beyond) has been a challenging one, but one of the highlights of our journey is the blending of our families, now forever linked by your incredible gift.

Watching Gage decline in health to nearly dying was heart breaking. It was a struggle to believe that he would actually get a kidney and live off of dialysis. I know that early in our PKD/OMA journey you were a supporter of our family. I always felt that you were sending me extra doses of compassion and understanding when you saw me each Sunday.

I remember the night you gave Gage your kidney and as I sat in the ICU listening to the hushed voices, the beeps of the machines hooked to him and the other machines with lights keeping children alive throughout the unit I was so relieved you were okay. I remember realizing that night how I’d been holding my emotions in about my worry for you because I was so consumed with my worry for Gage. I remember trying to put myself in your position; watching from the outside realizing you could help save my son. I try to imagine how it might have felt to talk with your amazing family and tell them that you wanted to do this. For my son. I try to realize how it must have felt for you to go through months of testing and be put on hold and wait. And while I can’t truly understand from your perspective, I know that you understood how I felt. How I felt watching my boy get sicker and sicker and then watching him just exist. And wait. Wait for his life to begin again.

I don’t know how one expresses their gratitude for saving their son’s life. I can’t figure out the words (even though I keep trying). In your honor, I can only try to give Gage the best life he’s capable of having…one with hope and fun and exploration and compassion.

Because what you have given me is hope and fun and exploration and compassion. I see and relearn these as I continue to navigate a better life for him. For our boy - mine and yours. The boy, who today, is very alive.

Thank you for following your heart that led you to him. The boy who undoubtedly has challenging times behind and in front of him. As I watch his life unfold, I’m so grateful he has the opportunity to grasp it.

Love you and that kidney of yours. Happy Kidneyversary.

Julia (Gage’s lucky mom)

Obviously, parenting sick kids has unique challenges that other families don’t share. Unless you are a parent of a chronically sick kid you can’t understand how these challenges can change who you are as a parent and a person. At least for me it has, that much I know.

With Gage’s bout of depression and PTSD so freshly minted in my head, I am worried about how I help Quinn navigate her trauma through kidney failure and transplant. Instinctively I helped Gage the best way I could and I think for me, an important thing is for me is to remember moving forward are those instincts and to draw from them the tools I need. I think the book I’ve been reading is giving me some other tools.

But the core of the advice for me is to listen. To pay attention. To be in tune with the kids. To learn that paying attention to the little details are just as important as the big warning signs - like your child wanting to kill themselves or die.

It’s important to remember that it might not be enough for that child to talk to them and ask them if they are okay. Because, as we all know, kids don’t have the vocabulary to express what is really going on. No matter how much I will for it to be true. This book helped me see that certain behaviors could be linked to certain trauma.

Sometimes its aggression and dangerous behaviors at school and at home. Sometimes it’s verbal attacks on themselves (”I hate me!” or “I’m ugly and stupid!” which Gage says a lot) or others. It can eating too much or not enough. Sleeping pattern changes and the acquisition of new bad habits (like biting nails, picking skin, cracking knuckles, all of which Gage did for some time) make their way known.

The problem? Those things could also be linked to the personality of your kid. Meaning - couldn’t every kid have these problems at some time or another when things are bad for them? I suppose if your kid has all or a high combination of all then there are some big warning signs.

Back over the summer, well, it really started on last Mother’s Day (Gage gave me hate mail that included a death threat) and had probably been building before that, he started to change. He’d gone from reasonably laid back for a child with behavior problems to new and more intense Gage. But he seemed to just get worse. The list of symptoms kept growing and by July 15thish, while we were on vacation and he was remarking about “when I almost died” I knew he was internalizing his trauma.

It’s not even that I was ignoring it but its so sneaky when it creeps up on you over time. In just a couple of months he went from okay to definitely not okay and we were speed dialing play therapists and psychiatrists across the southeast. This kind of intense gear-switching for a crisis is not new territory for any parent of a kid (or two) with a chronic, life-threatening disease.

Trauma doesn’t just stop with the kids. Some days the managing the kids’ disease makes me feel like I have some trauma injury as well. As evidenced by the occasional hysterical crying at night and the everyday feeling like I’m on a hamster wheel that won’t stop. In fact, the hamster wheel? I almost don’t know there’s a difference between that pace and regular life.

I think I’m wrapping this up by saying there’s also a component to childhood trauma that is saved for the parents. Well, to this parent anyway. And they don’t have a chapter on that in the book.

Gage is being followed very closely on his weight because of the 35+ lbs he gained after transplant, he lost 7 of them on the adhd med, which isn’t uncommon.

During his last appointment (every three weeks) he gained a half a pound, for which we were delighted, of course. After weigh in and before his appointment was over Julian saw Quinn in the hallway, patiently playing.

With rocks.

You see where this is going, right?

The previous rocks that had been in Gage’s pockect…DURING WEIGH IN.

At home,

Julian: “Mommy, Gage weighed a whole 1/2 pound more!”

Gage, speaking matter of fact: “Yes. Yes, I did.”

Me: “That’s awesome! I’m so happy!”

Gage: “And I also had a lot of rocks in my pocket!”

I had to laugh and later Julian agreed that we’re so happy he’s joking around again. I’ve missed his playful mischievousness.

Excerpt from Trauma Through a Child’s Eyes (By Peter A. Levine and Maggie Kline) reprinted with permission from publisher.

“Daddy, daddy, let it go, let it go! Please don’t kill it! Let it go!”

These are the terrified screams uttered by ten-year-old Teddy as he bolts from the room like a frightened jackrabbit. Puzzled, his father holds a motionless tree shrew in the palm of his hand, one that he found in the back yard and brought to his son. He thought it an excellent and scientific way to teach Teddy how animals “play possum” in order to survive. Startled by the boy’s reaction to his seemingly harmless gestures, Teddy’s father is unaware of the connection that his son has just made to a long-forgotten event. It was an “ordinary” event, similar to one that millions of us have experienced.

On Teddy’s fifth birthday the family pediatrician and lifelong friend came for a visit. The whole clan gathered around the doctor as he proudly showed them a photograph he had taken at the local hospital of baby Teddy at age nine months. The boy took a brief look at the picture and then ran wildly from the room, screaming in  rage and terror. How many parents, teachers, babysitters, and health care providers have witnessed similar mysterious reactions in children?

At nine months of age, Teddy developed a severe rash that covered his whole body. He was taken to the local hospital and strapped down to a pediatric examination table. While being poked and prodded by a team of specialist, the immobilized child screamed in terror under glaring lights. Following the examination he was placed in isolation for seven days. When his mother, who had not been allowed to see him for over a week, arrived at the hospital to bring him home, Teddy did not recognize her. She claims that the boy never again connected with her or any other family member. He did not bond with other children, grew increasingly isolated, and began living in a world of his own. Though by no means the only factor, the hospital trauma experienced by nine-month old Teddy was an important, possibly critical, component in the shaping of Theodore Kaczynski, the convicted “Unabomber,” who sent letter bombs to various people involved in technology and wielding corporate power - arguably, his revenge against the same dehumanizing forces that overwhelmed and broke him as an infant.

Cherylc asked specifically about my reference to the Unabomber and so I am including the above excerpt. Earlier in the book there’s a paragraph (couldn’t find it) setting up a scary case study and cautions readers, telling them that trauma isn’t going to make every kid a serial killer.

It’s worth repeating: Trauma in infancy and childhood isn’t going to make every kid a serial killer.

But we also can’t go through life expecting there are no after effects of trauma for the kids that experience medical trauma, or a one-time event (they address that, too) or years of medical interventions. Because this life, the life of medical intervention is not normal.

I know many of us parents suck it up and make it normal. It’s a survival technique, it’s our way of coping (or at least it’s my way) because if we don’t embrace this life of sick as our normal, there will be hell to pay in the Emotionally Well department. We have to accept the situation. But I have to also realize that accepting it doesn’t make it all normal. And it doesn’t make it right. And it doesn’t make it easy. And it certainly doesn’t make the residual affects on the kids or all of us go away.

I am sure some people experience trauma as a child - as a victim, a witness, a patient - and they are just fine. They grow up without some of the outward symptoms of trauma that Gage has experienced. But not everyone is that lucky. We’re certianly low on that around here. That and good genetics.

I think reading this book is enlightening ways that aren’t always “Ah-ha!” but sometimes is “Ah, crap.” And reading along and reading some of these case studies is hard to do on the best of days. But I still go back to it is better knowing than not knowing.

Right?

A mom left a comment to last weeks Trauma post about her girl needing a kidney transplant and if the authors of Trauma Through a Child’s Eyes had suggested that infants can have memories of trauma…and my reply.

Emily,
Sadly, the authors report that even infants can experience and relive the trauma of medical intervention. The basic premise as I understand it is that their little brains have feeling memory (my very crude understanding, there is much more information about the brain and how it relates to trauma in the book) and so their minds hold on to the feeling of the trauma and they relive it because they do not have cognitive ability or language (obviously) to express and release the memory or the negative feelings surrounding the trauma.

My understanding is that the kids then live in a state of trauma and it is expressed in many different ways. Some kids express it with anger/aggression, some kids withdrawal, some kids have outbursts when there are triggers.

It is difficult to recognize the symptoms of trauma on your most aware, in-tune-to-your-kids day, but it is nearly impossible to see them when you have no frame of reference. No guide.

And that is where I was. I didn’t know that some of Gage’s behaviors could have been related to the trauma he experienced. I wish I had. I might have done some things differently. At least I would have been aware of the possibilities and explore the possibilities earlier. Maybe we could have side swiped his suicidal feelings, his anger and maybe his depression would have not been such a crisis.

If there are questionable behaviors the authors believe it could trauma related and they lay out lots of examples. They say that allowing the child to express feelings (through various forms of help), even in toddler hood, allow the child to process them. There are examples they give of kids who are diagnosed with autism but they are not autistic. They are just stuck with the trauma. It would be a good read for you at some time, but it is a hard read. Very scary. They give case studies that can really upset you (trauma that the Unibomber experienced is one) - so be warned. I think though, for parents of kids who are facing any medical trauma, it’s a must read. Read some, put it down, read some more. Take time with it is what I am saying. Don’t push too hard through it at once unless it’s one of your Feeling Particularly Strong Parenting days. I bounced around a bit and marked what I wanted to come back to. I cried a lot reading it and still do. But we can’t let that stop us from getting information that could possibly help our kids. Cause it’s our job. I chalk this part of raising sick kids up to the Sometimes Parenting Sucks category.

I wish I had this book when Quinn and Gage were diagnosed. But I have it now. And I’m all for things that make us better parents to our kind of kids.