I didn’t just wake up one day and have multiple medical and mental appointments, emergency room visits with face masks, or juggle 22 medications for two children and an adult relative.

I eased into it over years. The kind of caregiver I am didn’t just develop in the first weeks of knowing about Gage’s OMA or Quinn’s PKD. The kind of caregiver I’ve become grew out of parenting the kind of people Gage and Quinn are and also some intuition about what is the right thing to do in advocacy.

When they have a need; I try to meet it. On any given day that’s not so different than millions of other moms now and before me. The difference is that I have those needs and the unspoken, unexpected ones to meet, too. Needs that come out of their disease, their academic challenges, and their emotional problems as a result of these challenges.

I’ll be honest. I don’t always want to do what I have to do in fighting for the right thing. But sometimes you can’t just turn away from what you know is the right thing. And that’s where caregiver stress comes in.

The stress comes and goes. And the strength at which I appropriately deal with them comes and goes, too. But I must always deal with them. When things get complicated I just have to plow through it. There isn’t something magical about plowing through it either; I just ignore some other parts of my life and do it. It’s what most people do. Deal with the unexpected messy things that come along with doing what is needed.

Sometimes I have to ignore friendships, my home, my work (Billing! Which I love to do!), my family, my own needs, and my marriage. It is just the reality of a busy life that includes taking care of special needs. Again, I know all moms are busy - for one mom it might be life PLUS homeschooling, another life PLUS managing athletic kids, and yet another life PLUS two outside-the-home working parents but for me it happens to be life PLUS a life-threatening disease coupled with educational special needs. After my PLUS is a constant emotional trip that never ends. When there is a lull, it’s the time to get ready for the next crisis. Which always comes.

Pushing aside my own needs isn’t a choice. It’s necessary. Sometimes we don’t always get what we would choose, right? Sometimes I have to put my head down and not look around and see what is missing in my life because well, that just doesn’t benefit me. Luckily I’m not the day-dreaming kind. Otherwise I’d spend my entire day wishing I were doing anything but what has to be done and it’d be counter-productive. And it just increases the chance for crisis because you aren’t paying attention to every detail of what might go wrong. And what caregiver doesn’t already have enough crisis in their lives? I know I do.

Caring for those with special needs can be all-consuming at times. And for me, right now it is. So, I’m missing a part of myself right now. But that is what doing the right thing means. Could I do less of the things I could give up? Yes. But I don’t want to lose those things either because those at least tie me to the Julia I am, which make me the caregiver I am and help me remember what other needs of my own I’d like to meet, too. So where do I fit my own needs in? Well, I don’t. For this period of time, I put my needs aside because of the greater need. That’s not to say that my needs are unimportant, they are important. It’s just to say that for now, they can wait. Because that’s was caregivers do. Hence, the stress that comes along with all this caregiving.

* Oh good lord how self back-patting this all sounds, like I’m awesome and all-knowing about dealing with special needs. I get that it sounds this way. It’s me really just working through my feelings and explaining to myself why I push my needs aside. While I know my family and friends think I’m awesome, because that’s what family and friends do, I’m not feeling my own awesomeness.

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.

Gage is a heaping bowl of destruction these days. We’ve noticed (just in the last two weeks) the listed items were damaged or destroyed and I am sure the list is not complete.

- Scissors

- Waterford crystal clock

- sewing machine

- door lock

- side trim on car (2)

- cut a hole in an outfit of his when he was a baby so it would fit on his stuff animal to account for a tail

- yard tools

- broke light bulb and poured water into it (WHILE STILL IN THE LAMP)

- swing

- door lock

- shower head

- helmet

- a book

- door hinge

- computer (although it’s old so we can’t completely be sure it was Gage)

- pair of tennis shoes

- a phone

- sliced the seat cushion of a dining room chair.

I don’t know if I’m happy or pissed. On one side of the argument it’s expensive and time consuming to repair items. On the other side, it is kind of cute because in a lot of the cases he is just interested in how things work and that leads him down a path (or 10) that are destructive.

You might think that we should watch him more closely, but honestly? Some of these things were broken in something like two minutes. While he was on the way to the bathroom. Gage doesn’t get hours on end to wander into destruction over time. It’s quick, decisive.

And expensive.

Me: Quinn, we have to do your shot shortly.

Quinn: Tomorrow! Tomorrow!

Quinn, shrieking: TOMORROW!

Me: We have to do it honey…it makes you feel better.

Quinn: NO! I don’t want it tonight, tomorrow or never! I do not want to feel better!

Me, calmly: I know sweetie, I do not like to give you your shots…

Quinn: They ARE NOT MY SHOTS! They are someone’s shots! But NOT MINE!

Julian and I holding Quinn.

Quinn, with a distinct long pause between most of these words: Stop it YOU! And YOU, TOO!  I.   HATE.   THESE.   SHOTS.   THEY.   ARE.   STUPID.   AND.   YOU.   SHOULD.   NOT.   GIVE.   THEM.   TO.   ME.   EVER.  EVER.   NOT.   ANY.   DAY.   EVER.

My mechanic called and told us the bad news. Even though they can fix my car (for $3,000) they do not recommend it. We can drive it until the engine quits (something about piston seals) but it’s loud and kind of my very own special version of The Clampets, Volvo Station Wagon Style.

We’re fortunate I can drive it for a bit (who knows how long?) while we really shop and compare another used car. My budget is under $5,000, preferably around $4,000. My current Volvo cost $3,750 in cash…and I’m going to miss her. She was trashy but dependable. You could throw up in her (Gage did many times) and she wiped down easily. She wasn’t the best looking car out there, but she held her own.

I’m going to miss her.

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.

The transplant coordinator called to tell me that they won’t send the paperwork in to insurance for Quinn’s transplant because Quinn’s GFR went up from two weeks ago. I’m disappointed for many reasons.

First and foremost is Quinn’s quality of life and the chance that she will face dialysis if we don’t do this transplant preemptively. She’s itchy and tired (procrit still hasn’t kicked in), she’s on something like 13 meds twice a day, she has tons of urine output, she just feels lousy and is crabby, and her overall zest for living is slipping away before my eyes.

I still need to talk with her nephrologist about it all, but there probably isn’t anything she can do to push it along. There is a nephrology team at Children’s Hospital that makes these decisions. And while she is sick and exhibiting symptoms relating to PKD she is considered too healthy for transplant. “Dr. So & So doesn’t want to transplant her before she needs it.”

This wouldn’t ordinarily be a problem for a child with kidney failure because it usually takes months for kids with typical PKD to be in complete renal failure and there is time to plan. Unfortunately my kids aren’t medically kidney failure typical. Gage’s course of disease progression and rapid rate of kidney failure is proof. There’s no reason for me to believe that Quinn’s progression will be slower/different than Gage’s. Which, I sincerely believe (call it gut feeling, call it intuition, call it whatever the hell you like), puts her needing dialysis.

At the end of June 30, 2006 Gage’s creatinine was around 2.2ish and September 5th - 65 days later it was around 4.3ish and 14 days after that it was 5.7ish. Seventy-nine days.  Even though they would have started the process at 65 days, but we were all in shock. It takes longer than that for donors to get tested at the center our hospital uses. This inability to move forward now puts Quinn at a terrible disadvantage.

She will continue to get labs every two weeks until they see her labs going in another direction and if it is within a year we won’t have to go through complete transplant evaluation again — just a couple of clinical tests. After a year, we redo the evaluation from scratch.

As a parent, I am not sure my opinion matters to the powers that be (Doctors and Insurance Company), but don’t think I won’t evaluate our options (appealing somehow?). Because with the inability to donor test quick and the good fortune of our first potential donor being approved, the only person this truly impacts is Quinn.

There’s no way she won’t get screwed in this deal.

When the liver team set this ultrasound up for Quinn we took the first appointment they gave us. We always take the one they give us because we have to assume that is first available. I rarely, if ever, will say no to a given appointment based on my schedule, but sometimes will based on the kids’ schedule at school and/or extra activities. The liver team needed this ultrasound because, apparently, one of the other two ultrasounds didn’t have the tests they needed. This was our third appointment. I’d taken it, already stunned a little bit honestly that they hadn’t gotten their act together considering Quinn had been through this 2 times already.

Like I said, I took the appointment they gave us, 11:00 this morning. It meant Quinn wouldn’t go to school and it meant I would be out of the office for the day. In addition to this appointment they scheduled a liver doc appointment at the end of the month - first available - and also because the ultrasound wasn’t until today knowing we’d need to discuss the findings of today’s results at the doc appointment.

Quinn couldn’t eat or drink (except to take her BP meds) so Miss Quinn was not all that pleased that the KITCHEN WAS SOMETHING LIKE 10 FEET AWAY FROM HER ALL MORNING WITH “FOOD RIGHT THERE” SHE COULD EAT IF MOMMY WOULD JUST LET HER, “GOSH ALREADY! MOMMY.”

I’d really gotten over my annoyance at the third ultrasound requirement because this is the system we are in and the process is this, and Quinn is really just a number with a checklist (that is not in fact a real, live working checklist, mind you) of items that have to be done in order for her to be considered for transplant. For Quinn, she needed extra clearance from liver and dermatology because of the suspicious mole on her back.

Imagine my surprise (and utter disbelief) when the ultrasound tech ask me if she knew what the liver docs were wanting that they didn’t see on the first round of tests they did for their department. What’s that you say? You have those? Yes, and they were taken two weeks ago at the first ultrasound appointment so, like magic, they were there all the time, apparently they just needed to click their heels to see them. There was some waiting involved because the U/S department wanted to talk with the liver department to confirm and it turns out the liver team didn’t know they were done, blah, blah, blah.

I cried. Quinn got worried. I told her as I grabbed her checks and we rubbed noses that I was mad and crying because I was upset…her time is important and she should be at school learning and I should be at work earning money but we weren’t at those places because people keep making mistakes. And I said I was sorry that she missed a day learning and with her friends. I said she deserved better.

In all fairness, this had nothing to do with the radiology department but they had to deal with me. I said, “I know it’s not you and this has nothing to do with you, but I’m pissed. This is our time and it’s important and this is a waste of time for a family that is already so challenged, and this is such a waste of time - Quinn out of school and me out of work…”

He stalked us because we were going to lunch, where he bought us lunch (seriously, he did) to help make it up to us. As if. While on the way and I’m still crying a little bit, we ran into the one of the transplant coordinators who said, bad news, Quinn’s GFR isn’t low enough to for sure be in insurance guidelines to warrant a transplant, so she might be rejected the approval for a transplant. There is some chance that Gage’s disease progression and Quinn’s symptomatic problems would qualify as enough reason/s to approve her, but we have to wait and see if we will need to appeal it or not.

(As provided for by the National Kidney Foundation - Glomerular filtration rate (GFR) is the best overall index of kidney function. Normal GFR varies according to age, sex, and body size, and declines with age. NKF’s KDOQI clinical practice guidelines recommend the MDRD Study equation to estimate GFR. Quinn’s GFR is 30 and 20 is the standard for transplant approval with insurance.)

In the hallway the coordinator also mentioned that we still need dermatology clearance because of the mole (dermatologist said to get it off before transplant). So I came up with this lame idea to take her in with Gage during his afternoon appointment to see if they would have mercy on us and remove the mole. It is a lame idea because Quinn is very sensitive right now to needles and scalpels and she didn’t take kindly to the needles and scalpels being used on her. So when we got home I called the dermatology office and guess what? The agreed to have Quinn come in too since we were at the end of the day. So, no longer would Daddy be able to take Gage (it was now minor to major visit and mom goes on all of those).

I tried to make a Board conference call for the PKD Foundation but it wasn’t to be. I had to drop off 20 minutes into it. Oh well, something must give, right?

Anyway, nearly 2 hours later and much drama that included me wrapping her up like a Burrito in the blanket I brought, bribery that involved the promise of tricks with nitrogen (?), and a lot of “This is a stupid, baby, butthead place!” the mole was in a jar and 3 stitches were in place of it. So it goes to pathology and hopefully it is benign.

This all speaks to the nature that while this is the 2nd transplant for our family nothing is routine. Transplant #2 looks nothing like Transplant #1. I’m a different person this time around. I believe more things can go wrong because they can. I know that if Quinn’s kidney function deteriorates fast like Gage there is a window of time in which we have to get her transplanted before the need for dialysis. This window will likely only include the time to test one donor only - QPD#1. And then to dialysis she will go.

My need for voicing (writing) this is the reminder that continued advocacy isn’t for nothing. I’m Quinn’s only voice.

For the 2nd time in a month Gage’s labs were elevated. His creatinine has been a steady .7 and now it’s .9. This worries me. I’m sure we’ll have repeats in the next week. Dang.

I need some good news on the kidney front - all round. From Quinn’s two or Gage’s one. I’ll take any, but would appreciate all three.