I had the person who was drawing Gage’s blood this morning shoo me away and essentially say “Let us do this” when I asked him if he wanted me to hold his hand today because she appeared to want to get started and I was trying to give him just a little control over the something, however small.

I said…”I get to ask him if he wants to do this a certain way.”

She dismissed me by ignoring me.

“He’s been here like over 150 times. He’s over it. I am trying to help him through this.”

She dismissed me again.

“Sorry, but you don’t get to tell me how I can comfort my child.”

She dismissed me again.

I was pissed.

I get that SHE wanted to ignore it and perhaps she thought that was best for Gage to not get into it with him in the room. But you should know that I don’t have the slightest problem with Gage witnessing me advocating for him. In fact, it’s an important part of our relationship – this caregiver I am, in his medical realm. Because he has to trust that I always have his back.

I am upset about it because she has no idea what is going on with Gage outside in the real world. I believe that Gage is going through a particularly hard time right now with being a patient. I know his status as a patient will never change. And I think he is just realizing this will never change.

She does not know that he often says he’d rather die than go to the hospital, and often when we leave the hospital. She isn’t aware he is watching his sister’s care for the same kidney disease intensify. She does not realize that Gage hits himself out of frustration and emotional pain. He’s struggling a lot right now and it’s a tangled mess of issues that we are trying to sort through.

And you know what? She doesn’t need to know.

She needs to follow my lead about what I think he needs right now. Period.

Just a note to health care workers: I get that you have seen a million people. And that with mangled care, things are rough and tight and suck sometimes in your world. I get that there are parents and caregivers that get on your nerves. I know that sometimes that is me. I get it.

But you don’t always know our back story. We caregivers do. And maybe, just maybe, if you followed our lead, we might be able to teach you something that might help you with another patient or family.

GAGE

There are many things on the list, post vacation (drats!) that must be done in the area of Gage Assistance.

1. Get name of child therapist that can deal with child trauma. Our behaviorist is great, but I think I need someone whose practice is just about kids who’ve been through a lot. Then call pediatrician to get referral sent for insurance.

Got the name, now need to see if he is on our plan and get a referral if he is or I need to add up his rate and figure out how to pay out of pocket. Spoke with Doc #1, who has a very limited practice, so he referred me to another Doctor. I’ve left a message and sent her an email.\

UPDATE: I spoke with Doc #2 and she referred me to Doc #3. She says as soon as she heard my message about Gage’s previous experience with medical interventions she thought that Doc #3, who is a play therapist, along with some other training and all for pediatrics. I sent an email to her and I will call her tomorrow too. And, the bonus of it all, she is close in proximity. I’ve requested to go in without Gage to get to know her. I have no idea if she is accepting patients or not. We shall see.

2. Pick up the book I ordered Trauma Through a Child’s Eyes. I’d seen it on a blog of an adoptive mother and I don’t know – I just thought it might be interesting for Gage.

I got and scanned the book in a couple of hours. This is all very interesting, because they address – many times in the book – the trauma experienced with repeated childhood medical interventions. There was a list of symptoms that show in behavior and let’s just say that Gage’s name could be footnoted. However, I notice that the list also mirrors the signs of other diagnoses that have been thrown around when talking about Gage – ADD, ADHD, Opositional Defiance Disorder, just to name a few. It has a lot of information about ways you can help your child cope – and we did a fair amount of them. I think it might teach me something about helping that Quinny B navigate some rough waters.

UPDATE: There is something to this book. I hope to be able to delve into it a little more this weekend. Right now, I am jumping around looking for stories that have something related to our situation. I do think there is something to the physical reaction to medical traumas being nureologically mapped in the brain. So for example, when there is a medical procedure with anxiety (say, for example the child is held down through crying and fighting) they are stuck with that physical memory. That is so very simplified to what it is all about, but I’m very interested in reading more.

3. Get labs this week to check Prograf levels because he is on his second series of scalp-eating-fungus drug stopper.

Appointment is tomorrow.

4. Get us parents in to see the behaviorist to tweak the new behavior plan.

Sent email, but need to call. Haven’t heard from behaviorist. Either he is on sabbatical, or he read my email and this blog and decided life is too short to deal with us.

5. Get Gage to clinic appointment in a week for transplant and talk to doc about possibly stopping the predinsone altogether (he’s on a very low dose, but still).

Appointment is next Thursday.

QUINN

1. Just called to get lab orders for her for this week, to check the dreaded BUN again. Should be faxed today, so we can go in tomorrow or Friday to a lab nearby instead of the hospital lab, where Gage has to go.

2. Rework her diet again…we’ve been letting the potassium creep back in.

3. Start the med that helps her…um…in the digestive area. Enough said.

UPDATE: Get her to let me condition and brush her hair. The Summer of Chlorine Hair has wrecked havoc. And we are finally past the Year Plus of grow out (and about 12 haircuts) after Gage tried his hand at hair cutting while he was bored recuperating

BOTH

1. Need to get them both ready for school! Backpacks, clothes and school supplies!

UPDATE: Tax free weekend shopping this weekend. And we got internet in Gage’s room on his computer, with lots of rules and spy-on-your-kids software as well as parental blocking software. And he has to share with Quinn.

ME

1. Need to get ready for meeting in Kansas City regarding an advisory committee I chair for the PKD Foundation. Leaving Sunday morning and getting back Monday night.

UPDATE: Work. Back from vacation and in full swing with getting back to work. Which is proving hard. But we have clients, who, you know, need some work. Walk for PKD stuff…like finish getting sponsors (we’re down this year)

I’m very irritated with Julian for an incident two weeks ago. I know…I will someday get over it.

He said something to me that hit me at the core as a mother, when I was venting about Gage’s behavior (Gage had dangerously kicked Quinn in her gut) while he was out of town for 5 days and I was getting us ready for vacation. It was the single, most hurtful thing Julian has ever said to me.

I won’t repeat it here because I don’t want Gage to ever see it or hear it, because it was, in my opinion one of the most hurtful things a husband can say to his wife regarding their challenging child. Especially because he knows how much I love my kiddos. Shame on him.

Last night as we were discussing the current plan of action for Gage’s issues, it resurfaced. I didn’t want it to, but since the basis of the hurtful comment was tied to Gage’s behavior, I ended up right back there. I am clearly not over it. It’s come up 4 times since that night nearly two weeks ago.

I’m bringing all of this to the blog because it illustrates how very sensitive issues are when you have a child (or two) with any kind of special need. As parents, as a woman and a man, and with our own experiences to draw from, we come to the situation with such different views perspectives. And it’s important to recognize that about each other as parents so you can remain unified when it all comes crumbling down. Because, as parents to two sick kids, it will. It. Will. Always. Crumble. Down. Sometime.

Much of the discussions around Gage’s current state of being – aggression, inability to express himself, lack of self control, caring and/or remorse, lack of motivation for learning, etc., end up with Julian pointing out the exact opposites of what we are talking about – as if to say, “No! Gage cares about Quinn because yesterday he did X for her!” or “When Gage did that, it wasn’t directed at you! He was just angry at X!” and I think that limits where we go with a conversation because I feel he defends Gage just a bit too much when we are trying to get nitty gritty of Gage. And let me tell you – there is nitty gritty right now.

I can see why marriages are often in trouble and some fail because of the added stress of special needs kids. I get that we both have our opinions – strong opinions. But we are still in it together. No matter what he said (I know, I’m a big tease, I’m sorry. But trust me, it was bad.) to me. He’s said he was very sorry, and he tried to explain why he said it but I am not there just yet. He asked me if I would be able to get over it. Which I think is a fair question, given that it’s come up 4 times and I’ve cried each time.

“It’s like this…” I said, “I HAVE to get over it. I don’t I have a choice.” And I will get over it…soon.

And that’s just it. When things like this crop up that distract us, because we’re a family facing complicated issues, we have to move forward from them to a common goal. Together.

There are many things on the list, post vacation (drats!) that must be done in the area of Gage Assistance.

1. Get name of child therapist that can deal with child trauma. Our behaviorist is great, but I think I need someone whose practice is just about kids who’ve been through a lot. Then call pediatrician to get referral sent for insurance.

2. Pick up the book I ordered Trauma Through a Child’s Eyes. I’d seen it on a blog of an adoptive mother and I don’t know – I just thought it might be interesting for Gage.

3. Get labs this week to check Prograf levels because he is on his second series of scalp-eating-fungus drug stopper.

4. Get us parents in to see the behaviorist to tweak the new behavior plan.

5. Get Gage to clinic appointment in a week for transplant and talk to doc about possibly stopping the predinsone altogether (he’s on a very low dose, but still).

We’re leaving the beach on the 16 month anniversary of Gage’s kidney transplant. I’m in awe of Gage’s energy and stamina (except for academics) for life and a day truly never goes by without my gratitude for Jody and her well-behaving kidney.

There are a lot of things on my Gage Agenda when we get home that involve his life experience with his kidney failure (“almost died”) and his being well and somewhere in there not being able to express himself for whatever reason and about my intuition of what lies beneath. And all of these things to me, even on my worst days with dealing with the Behavior That Is Gage, I am still so extremely thankful that he is alive.

Do I always have the patience I need for Gage’s unique behavior?

No.

Do I always appreciate Gage’s energy level?

Um. No. Hence the question above.

But without question, every, single day, I appreciate Jody’s kidney donation and the offer of three other potential donors.

Thanks Jody. Happy, Sweet 16 Months of one less kidney. Your gift will always stand out in my mind as a mother-to-mother gift, even though it is Gage who received your kidney.

This mother loves you.

Gage is not amused in this picture, but then again, he rarely is when I pull out a camera and tell him to move closer to his sister.

In this picture, Quinn is trying to help him smile, although on second thought, Quinn was probably putting herself in danger of at the very least a shove. But he did okay, and there might even be a picture of a smile somewhere in the 180 pictures I took this week.

The beach is good for a lot of things…we’ve been able to rest, and play and hang out together. It’s been a good trip. With this trip has come a renewed spirit to help Gage, well, get some help.

I think he is having a hard time expressing himself (always been a problem) and I think that the trauma of his life experience of being sick and then well has impacted him in a way that could be coming out now through his behavior. Honestly, he’s always been a challenge and really, what came first? The developmental delays? The sickness? It’s a complicated tangle of questions.

I know this because last night when I was talking with him I said “Do you remember when you were on dialysis?”

And he replied, “You mean when I almost died?”

My heart sank.

I said “Yes, then.”

“But you know when all of that happened, we were going to do everything we could to make sure you were cared for and that you had everything you needed in order to stay alive until you could get a kidney and that meant dialysis. And even if Ms. Jody couldn’t give you a kidney, we would not have stopped looking for a kidney for you. Because that is what we do. We take care of you and Quinny and our job is to make sure you are safe and alive and living a good life.”

Silence.

“You know, Gage, whenever you need to talk about anything I will always listen and if you need help, I will always try to help you. So you can talk to me anytime you want to talk.”

And he says, “I’m done.”

And with that comes my resolve to continue that conversation. Because there is much more to that story. And that is what the good beach brought me.

The beach. It is hard to have a bad time at the beach. Even if the weather is bad (which it has not been) there is still something about the beach. I would say that Gage’s overall behavior this trip has improved. Which is surprising, because I didn’t have high hopes. We have a lot to do when we get home to keep the behavior modification going, which is tiring just thinking about it.

But for today, Gage seems normal.

I know. Can you believe it? Because I can’t. You know why? Because I have approximately 48 other pictures where Gage or Quinn or both have funny faces, or Gage is grimacing. I’m assured that the non-smile pictures of Gage will carry on through at least another 6 years. I’m also fairly certain that the other 36 pictures I took at dusk of the kids don’t reflect any of the love between siblings.

We were hermit crab hunting with my friend’s family, who happen to be at the beach at the same time. My very lovely, extremely go girl power friend insisted on helping Quinn find her own hermit crabs (and cleared the other kids from the area!), because my girl, is a little slow on the searching and often behind all other kids. Quinn was very excited to “find” the largest one of the bunch!

It was great fun. We let them go in the water today along with stories about all the new friends the crabs would go find.

Many times throughout Gage’s day he suffers from lack of self control – often letting his impulse control problem get in the way of the current fun we are having.

Tuesday he didn’t let it get in the way to any degree that we consider dangerous or hurtful and the family (and our most excellent young babysitter, Mona) had a fabulous time frolicking in the waves and pool and eating oysters (he ate baked!) out at an annual pilgrimage to the local oyster place.

Gage can wreck a day for the family if we let things escalate. There in lies the problem – we must balance the behavior modification plan perfectly in order to have an overall good outcome for a day. Ignore what we can, be serious about what we should. It’s entirely easier here because we lack the distractions of day to day life. But the timing of this vacation was everything, if you know what I mean.

A few years back a teacher once told us that Gage had a “great day” and that he only “tripped a deaf child in the hallway.” I’ve never forgotten that statement from her and have recently come to appreciate what that means. Because it can always be so, so much worse. Yesterday was an even better day than that, so we’re ahead today. See? It’s all a matter of perspective. I use the tripping story in my head a lot.

I know. Small victories, huh? Really small apparently.

We’re looking forward to a wave jumping day today too, after a hot plate of cinnamon rolls when the kids get up. They’re completely tired and sleeping well, which is a perk as a parent. It’s also a perk of kidney failure too – the sleeping kids. Crude I know. Don’t hate me.

If you have a completely compliant child most of the time that doesn’t consider terrorizing their sibling all day long as a good time, count your lucky stars tonight.

And Leslie, must give a proper shout out. Beer just about spewed out of Julian’s nose when I told him “you can’t negotiate with a terrorist” a couple of nights ago when he was following Gage to deal with an incident. Thanks for that term. It’s appropriate most days; except for yesterday, apparently, and hopefully today.

There’s always hope for no children being tripped in the hallway.