This Monday morning I’ve noticed…

- That I am a complete sucker. Quinn wanted a messenger bag for school instead of a “two handle” back pack and we went to 10 stores yesterday looking for one that wasn’t for a grown man of 6′4″ in a color besides black. And you know what? There weren’t any out there. She wants one because two friends have them and well, it seemed like a simple request. So she asked me to make one. So what did I do? I made one to surprise her, in light blue denim, with blue circles for the flap. I found a strap from another bag that was trashed so that was easy. And well, she was excited this morning to see it…when she was getting ready to walk out the door she said, “Now, how do I put it on?” and then she said “Thank You! I really love the circles! I couldn’t see what it would look like in my brain!”

- Lucy’s (our dog) health care costs are more than the kids’ this month. Sadly, that’s saying a lot.

- Gage is OCD about some things. Yesterday’s (and last month’s) obsession was seeing how high he could get a pedometer to go by shaking it. Last month he hung it from the ceiling by a string in front of the fans that are pointed at his face all night so it could move back and forth and count higher. He was excited to report it worked. If we could get him to work that hard on the practice CRCT tests, he might not have to go to summer school.

- The spirit of a community coming together is always surprising and it’s not. There was a tragedy close to home and the kids’ school community is helping out. It is good and uplifting to be around good people.

- When I arrived at work I only saw faxes for copier paper waiting for me! There is still no “medical need” letter from Dr. Kind – I hoped it would be faxed. It’s supposed to be written and given to the transplant team for them to send over paperwork to the insurance company. It’s disappointing (understatement), as you might imagine. Because I’ve been waiting on it for over 3 weeks.

- I’m awfully tired for a Monday. Very tired.

While Quinn was getting ready for bed,

Me: “Quinn, why are you putting spit on your stomach?”

Quinn: “Because you said I’m itchy because my skin is dry.”

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.

Lucy, the most awesomest dog in the world, has an elevated kidney number. Not to worry – it’s just her BUN number and it’s slightly high.

I think when YOUR DOG, along with your kids, HAS A FUNKY HIGH KIDNEY NUMBER, it speaks to the particular mutantness of a family.

I’m just saying.

I’ve been working on a post for Trauma Tuesdays but I am stuck with it. It’s about how parenting sick kids changed me and how I guess that’s a lot like how trauma has/will change/d the kids.

I can’t wrap my brain around it, truly.I need to do it but I am stuck. I’m going to try to work through it in the next couple of days. Until then, no Trauma Talk!

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.

- I finally had a chance to speak with Quinn’s BCBS case manager and I am currently all kinds of love for BCBS. She actually said things like, “I’m here to help” and “I will follow up with that” and “If anyone has a problem, have them call me, just give them my number.” Seriously, I almost started crying when she said, “I will call your doctor and get that letter.”

- I have a new (old) car finally. It’s an older car than my last one – a 91 Volvo 240 and I love it. It’s a quriky car and Julian largely thinks it’s amusing that I have a car that cost $2000. We had to spend some money on basis repairs, but we found that in the other FIVE cars we looked at as well. Plus, I had to go to the Volvo parts seller for some tender loving care items that were cracked/broken. But it’s all good. It’s reminiscent of my VW bug that I loved. Julian made me strongly encouraged me to sell it when I got pregnant with Gage. This is that – but safer and with air (that needs a freon recharge. I love the simplicity of it – no computer chips, minimal power items to break. I am sure my mechanic is just as happy as I am about it today.

- Gage is doing fairly well. We still have some ups and downs with behavior. He still mildly talks about wanting to be dead, or wanting us to kill him, but it’s not frequent and he’s not saying he wants to kill himself. And he hasn’t grabbed a steak knife or put a rope around his neck in months. We asked to increase his anti-depressant about 6 or 8 weeks ago and there was a noticable difference in the quality of the engagement with us and with life. He plays outside daily now and is engaged with us when we’re doings something. Don’t get me wrong – he still has issues – but it is better.

- Quinn is feeling poorly. We need to get on with the transplant already. And um, I know putting this out in the universe is tempting fate – but I swear, I’m going to lose it if she goes on dialysis and I think there is a good possibility that she might need it. It’s just such a remarkable difference from a few months ago.

- I’m still loving our BCBS case manager.

- The obsessive checking of craigslist for newly listed old Volvos has brought me to the realization that if you are obsessive about car shopping your house can get pretty nasty. It’s a mess. This does not help my mood. Tomorrow really, I’m on it.

- My nephew’s situation is challenging. Because of his the type of special needs in particular he’s not fitting neatly into a specific category/program. I’m his very own case manager. Which adds to why I need a case manager for Quinn.

- Work is going well. I have some great clients who are letting us do some strong work. There is one job I opened in late 2007 that still isn’t approved and printed – and it’s just one piece. It is the longest open project I’ve ever had on the books.

- A while ago a did a post titled “100 Things About Me” and I only made it to 52. The list is now into the 70s but I am still working on it. You’d be amazed about how hard it is to come up with 100 interesting (and that is highly debatable) things about me. And the list is getting “more boringer” as Quinn would say.

- I’ve been thinking all week about becoming a vegitarian again. That’s as far as it has gone.

- I have a lot of posts brewing in my head, but I can’t seem to get them typed out. They involve…my thoughts about going into transplant #2, my fears about our good kidney (HAHAHAHAHA) karma running out, my resentment of doctors who don’t listen and one about working/mothering and how sick kids change that about me.

That about does it for today.

I know I’ve posted this picture before, but none of my pictures made it from the two conversions from other blog hosts, and I don’t have the HOURS to spend going back over old YEARS (5 in May) re-inserting pictures.

Plus, this is one of my favorite pictures of Quinn so I don’t mind posting it again. This is at the zoo and Quinn was amazed and happy to be mobile like the other kids – walking up a slight slope and sliding down a small slide on the side of a small hill. It was one of the first times she’d be out and about on the walker and she cruised around the zoo like you wouldn’t believe. She was two and her feet and ankles were in sturdy custom (and expensive) SMOs (braces). They made her walk funny, which is interesting because with the vision disorder (serious balance and perception issues) and the low muscle tone (lazy, dragging lower body) — so she already WALKED FUNNY.

She was so playful and spirited. When I think about this picture and how she was feeling, I want to bottle this and be able to interject it into her for the next several months as we find our way through her kidney failure and transplant.

My girl. So full of life and fading so fast.