- Why doesn’t the kid clothing industry make big kids clothes with elastic? Not all kids (both of mine) can do buttons and snaps!

- Why does Gage insist on huge card board boxes in his closet while pulling everything that should be in there out?

- Why do people not follow through?

- Why am I nearly falling asleep at 4pm, but wide awake at 2am?

- Why does Quinn have food on all of her clothes at the end of each day? And how can it get on her back shoulder?

- Why does Julian want to talk about a stressful topic when I am walking out the door? It’s not like I don’t see him nearly 24 HOURS a DAY, 7 DAYS A WEEK.

- Why don’t the kids hear a simple request, but they always hear something like, “Spongebob” or “M&Ms anyone?”

- Why don’t Southerners use their blinkers?

- Why can I  remember what a brochure cost to print 15 years ago, but I can’t remember my friend Kathy’s cell phone number?

- Why won’t Vital Records in Georgia send me my nephew’s birth certificate that I ordered two weeks ago?

- Why when Gage has a great morning at home, he has a bad morning at school?

- Why when Gage has a bad morning at home, he has a good morning at school?

- Why does Gage want to drive me insane by eating 3 bites of food at meals?

- Why does the insurance company send me a rights statement with every single statement? Seems to me they could save a bunch of trees by sending just one with the first statement of the month.

- Why can I manage the complicated health care / mental health care of three young souls and not get myself to my gyno?

- Why can’t I keep my kitchen counter cleaned off more than an hour?

- Why do I love to do laundry, fold it but would rather have the clothes in the living room for a week instead of put them away in drawers?

- Why must Julian clear his throat every time he gets on a phone call — and I mean clear his throat AFTER the call has started and not BEFORE the call has started?

If any of you can answer any of these questions it’d be great. Maybe then I could get to sleep before 2am, because I am thinking some of these things are keeping me up.

Posted at 1:09am.

Sometimes the kids crack me up. Granted this was last April, but still. He’s made me laugh a few more times since then, but this picture shows Gage at his purest form.

As I navigate new territory in government services for an adult family member with special needs I am awestruck by their helpfulness.

I like to tell Julian that it must be Obama – that he is so good and wonderful that already, our government is running more smoothly. Julian isn’t buying it.

But everyone I have talked to in both state and federal programs (something like 15 people) have been completely competent. Not only have they answered questions, they’ve made suggestions about other services this family member might qualify for and who we should contact and what items we would need to file.

Between the Inauguration and the courtesy that the government has shown me, I’m feeling all kinds of love for them right now.

I hope it stays that way during the approval processes as well.

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

Signs and Symptoms of Trauma in Children

Other symptoms of constriction that you might observe in your child are: a stiff or awkward appearance, rigid gait with poor coordination, or tense neck and shoulder muscles. His insides may feel tight, and the ability to see, hear, smell, feel, and taste may be come dampened so that food just isn’t interesting. Your child’s focus may then become narrowed towards sources of possible danger even though there are none. This constricted awareness serves to reduce anxious feelings. This can prevent your child from literally feeling like his is falling apart. However, over time, this tension can recreate the very feelings the child is trying to avoid. (The same is true for adults as well!)

Unfortunately, in this state, without the guidance and safety provided by an adult, it’s unlikely that a child can relax enough to notice what’s around – even if what’s around them could be rewarding. Relaxing would mean letting down the guard of “protection.” This shutting down was meant to be temporary. When it is not (like in the example of Sandra below) constriction can lead to both physical pain and the loss of fun and excitement in exploring and enjoying simple pleasure. Because the world is now perceived as a dangerous place, healthy risk-taking – as in exuberant play – is, sadly, avoided.

When I first read the above I didn’t understand it because frankly, it’s a little bit over my head. But I do understand it enough to know that Gage does live in a hyper state of arousal because he has been conditioned to always be on alert because of all of the medical interventions he’s endured. He definitely has an awkward gait (walk) that I always notice. I notice it enough that I just said a couple of days ago to Julian, “Do you see how he walks? It’s so strange. Like he is physically hurting.”

The part of this that really struck me is “This can prevent your child from literally feeling like his is falling apart.” Mostly the statement make me sad, because this is so obvious, yet could be looked at like a personality trait. Like I have an uptight child who takes everything seriously. Gage wasn’t always like this though.

If I look back to the days before drastic medical interventions took place, Gage was a child who was generally happy although still needed some help because of slow development. He was a smiling, laid back (I know…I long for the day) toddler with a better disposition than he currently has (understatement). It seems so obvious now, but of course his treatment for PKD would impact who he is — drastically even. I didn’t see the big picture before but I see it now. I understood and tried to help him navigate feelings as they came up, but I think there was only so much I could do. Or that Gage would let me do. Because, it seems, he was just trying to figure out a way to survive. A way that worked for him at the time and he’s still doing it. He’s still in survival mode; trying to keep from falling apart.

As we navigate his mental health issues I’m glad the book is helping me understand that all of these behaviors of late; the suicidal feelings, the anger/aggression are his normal. And Gage is dealing the best way he can. We’re slowly unraveling the tangled mess but the unraveling is very complicated with several twists and turns. And it’s not fun to watch or facilitate.

Sadly, I think Gage is a long way from being able to digest and understand his feelings around what he has endured and even farther away from expressing them in a way that we can all understand. But this book is helping me see that just by my knowing the how and why he is the way he is is enough for now. I hope healing for him will come.

It’s the 22nd month kidneyversary today and there are so many things I am thankful for that came with the new kidney from Jody.

I can’t believe it’s been nearly two years. Two! Two years of yellow pee, good labs and energy! Granted some of the energy translates to Gage bopping other kids on the head with a book, but still, energy! And best of all, no dialysis and feeling crappy. Because that totally sucked! Except the fact that the dialysis was saving his life, cause that didn’t suck.

Thanks Jody. Your kidney is awesome. You are even awesomer.

Love you. And your gently used kidney.

My BFF is moving here (she used to live here) from the other side of the country! I know!

I’m crazy happy about it and can’t wait to see her coming off the plane. Home. Finally.

She says now, she’ll actually have to physically help me now and not just “call it in.” I promise her I won’t overwhelm her, but she has to know I’ll be getting a few organizational TO DO list get togethers out of her. She’s really good at those. She’s leaving Seattle, coming here without a job lined up and it’s all pretty gutsy.

I cried when I got off the phone with her. She summed it up when she said, “You deserve a little happy.”

Yeah. Happy.

Quinn in skates, in NY! Being in NY was great. Just had to focus on the kids and having fun. It’s a little crazy right now in our world, but at least we have NY to look back on!

For a parent with a kid (or two!) with crappy kidneys there is the always looming “when will they need a transplant” question. As soon as we hear the diagnosis and prognosis we ask. We ask our doctors to look in their crystal balls for the answer.

It’s never there.

There isn’t anything that is typical with your child along side another child with failing kidneys. Just because my kid needs dialysis doesn’t mean yours will. It also means that we parents live in a continuous state of flux with the “when will it happen” question.

When this…Then that.

It’s sometimes really hard to let go of the timing of a treatment because then that proves the theory that our doctors just don’t know.It’s hard because we want to know. We want to know WHEN and THEN.

It’s what we do as parents.

Such is the case of Quinn’s Elusive Transplant. I am trying to obtain a second opinion and the other center wants a different lab value (simple blood work test) to calculate a kidney failure marker. So far, our local Doctor isn’t talking about pushing anything here in our city and is remaining neutral. Dr. Wonderful is offering insight into WHY, but not much of WHEN or THEN. Hence, the additional lab value needed.

The transplant is a goal. A goal to move Quinn onto the next stage of her disease. As we know it’s not the end all, be all because it is exchanging one set of problems for another (that we gladly accept as an option) but it’s also the goal to her feeling better and it’s the answer to the question.

Knowing is comforting in my world, because so much is uncertain. Knowing helps me feel normal. Even if it involves a life-saving transplant. Knowing helps us move on to The Next Thing, whatever it shall be.

BCBS gave me approval to get the two meds Gage needs (tomorrow) for another month. That gives me plenty of time to work out yet, another way to obtain drugs in the every-changing world of raising kids with special needs.

So, hardly any time at all. It only took 2 hours, 4 call backs, talking to seven people and arranging one courier for today (Cost $8.00, much better than the hour it takes me to get there and back) and complete follow up with the local pharmacist.

Yesterday, during a National Holiday, our pharmacy (one of two in the city that handles these type of meds) called to tell us that Gage’s Cellcept and Prograf couldn’t be approved because our insurance company – BCBS – is requiring us to order these two meds by mail order. Which really, in the big picture, wouldn’t be a problem, except that we typically order them a day or two before we need them. So we need Prograf on Wednesday morning.

To pay for 4 days of them out-of-pocket is nearly $130.00, so that’s not a great option. Four days might have bought us enough time to get mail order meds in by when we need them.I actually have no idea how long mail order meds take to get set up or processed.

BCBS didn’t send us a warning this would happen. Not one letter, not a call, not an email to let us know this was coming. This completely sucks. Because after I made 5 phone calls to the new mail order pharmacy (as directed by our local pharmacy to call) they didn’t know what to do with me so I got moved and moved to talk with different people. And the people there have no connection to the benefits and or approvals for out of ordinary situations.So they directed me to call BCBS to figure it out.

I need for BCBS to approve these two for a month so that I can do what I need to over the next month. This is the kind of thing that slows the process and takes time, that bogs down the caregiver. Because if you think about it, all the things I do to  manage the kids’ care have this same process. Get rejected, or transferred, call, wait, get direction, call, get switched, get forms, call, wait, call again, call someone else, file, get fax, etc., etc. It’s a vicious cycle.

And it begins with companies not really caring what I have to do to get it done. As long as I have pre-approval. And they make that so easy.

Easy breezey parcheesy. As Quinn would say.