I hear (through a very reliable source) that Cheryl is approved to give Quinn a kidney. Kinda. Sorta. Probably. No really, she’s mostly approved, almost completely, depending of course, except for one little detail.

That Liver. The one we looked at today closely with the eyes of an ultrasound Doppler thingy. Quinn’s also been put back on a liver med she was taken off of in December and we’re hopeful her liver numbers will come down. We retest next week (I’m shooting for Thursday to take her so I can follow up with liver doc Friday).

After I spoke with our transplant coordinator I told Julian, then called Cheryl. I said…”Hey, I guess we didn’t have to wait, you are apparently approved by everyone, and so you can donate to Quinn as soon as the liver team clears her…so I guess this is a kinda, sorta approval and this is probably going to happen.”

I know, anti-climatic, right? But we were still thrilled and thankful and Julian and I sealed the news with a kiss at the office. I could tell Cheryl was happy and excited to be this far along, too. I figure when we know for sure, for sure (that means when a surgery is scheduled we can have some kind of celebration with Cheryl’s family.

Until that day we need to wrap up some things…

• I need to confirm with a doctor a new med protocol.
• I need to see if our application for a medical spending account is/was approved through a non-profit here - they match funds - and then use the money for meds, etc.
• I need to get confirmation of the removal of Quinn’s kidney.
• I need to get someone to head up a little care team for Cheryl and her family for food and such during her recovery.
• I need to finish the process for applying for medicare/medicaid for Quinn.
• I need to make a work plan for me as I am the primary person for all things medical.
• I need to make a care plan for the relative we’re helping while we’re out of pocket.
• We need to decide about timing for surgery - rush and get it done ASAP or wait until after school starts. There are a lot of factors, including; work flow, personal, school start, Cheryl.

That’s enough for now, I guess. I need to go to bed so I can rest up.

Quinn has to have a doppler ultrasound (check for blood flow for the liver) at 12:30 today and she can’t drink or eat before. Sure, she could have gotten up before 6:45 and eaten, but where in the world is the fun in that?

So after my nephew’s drop at his program the sitter get here and I work a bit, I’ll take her to Children’s Hopsital. Hoping there’s absolutely no change in the ultrasound from last December. I am not expecting a change to be honest. I’m not expecting some crazy call about how bad her liver is…seriously.

But you know that is WRONG, WRONG, WRONG of me.

We know Gage can be hard to be around sometimes. He can be inappropriate in what he does and says. He can be destructive and he doesn’t always do the right thing.

But he can also be charming, funny, sweet and engaging.

Unfortunately a lot of people don’t always get to see the nice side of Gage and sometimes they don’t even want to look for it. That leaves us with a lot of people in our everyday life who don’t like Gage or care to be around him.

One day Julian was nearby keeping an eye on Gage, as we often do, and Julian heard a person saying something about Gage to another child. Julian asked this person if they were talking about Gage, they said said no, and got in their car and left. Then the adult came back a short time later and told Julian that they had lied, felt very badly about doing it, but yes, the conversation earlier was about Gage. They felt bothered about the incident and decided to come back and apologize. For which I have a lot of respect, honestly. I have a feeling it just bothered them though that Julian overheard it, not that anything negative was said.

Sometime later I saw this person, who I had politely acknowledged over a few days and they approached me. Really, they didn’t have to, I had just made a mental note to be extra attentive of Gage if they were around. But this person came up to me and said they were sorry for what had happened and that they actually had a soft spot for Gage. They just hadn’t realized it was Gage when Julian overhead them.

The conversation this person and I had was uncomfortable because I had to tell this person many of type of following statements…

“It’s okay, we know a lot of people don’t like Gage.”

“It’s fine, really, we know a lot of people don’t know how to take what he says or does.”

“It’s just a part of raising Gage, realizing and accepting that a large majority of people don’t like him. It’s a part of our everyday life, so it is something we are used to.”

“We understand that you may not like him, it’s okay, really.

“I accept your apology, and I appreciate you saying something.”

“We understand it’s hard for people to accept him. This just goes along raising him.”

“We know that generally people who aren’t close to us do not like him.”

“I don’t know if you know, but it’s been a really hard year for him…blah, blah”

This person was visibly upset and said they didn’t want to be that type of person. Unfortunately it happens. This person just happened to be called out on it and had to face their own judgmental attitude, which isn’t easy to do.

But it’s the reality. Human nature. People are judgmental. They see Gage doing or saying something he shouldn’t be and they judge. They judge us as his parents and they judge him. They pull their kids away from him and they isolate him instead of interacting with him in a way that helps him learn. And Gage’s world is just more limited and feeds into the cycle of isolation which has limited friends and social interaction to begin with.

But, having said all of that. I understand. I’m just sad that we have to know that people don’t like him, or that people don’t give him a chance. And what’s more, for the record, when your kids are having medical, social, and emotional problems you don’t need people to shun you - you need more people to embrace your family. You need, most especially, more people to embrace your child.

People really are missing something special when they bypass getting to know Gage. When he’s engaged, as he is a little bit more these days, he’s full of ideas about inventions and he sees the humor in life. He’s a mischievous thinker as well as problem-solving. The few friends that he has really like him. They think he’s nice and funny and wild and they like being around him.

I wish more people did, because honestly, it’s hard. It’s hard emotionally to face that your kid isn’t liked. But it’s not the end of the world. Gage is alive. And slowly but surely he’s engaging with life again. I’m grateful for his life. The hopes I have for his life involve a greater self esteem, that he will have a few best friends through life, that he graduate high school somehow, and find a job he’ll be happy with and that has insurance benefits. I hope he won’t kill himself.

See why I can’t spend too much energy on worrying if people like Gage? As a family we gravitate towards people that see the spark in him without us having to point it out. And I’m forever grateful for those people - the few parents that encourage their kids to accept and have friendships with Gage, adults who are in his life who appreciate him, the friends of ours that accept him the way he is, without judgement. You know who you are.

Why?

I write this as I sit in the radiology waiting room. I don’t enjoy waits of any length. I have no patience. None at all. But I sit here & I know why I sit here waiting, without a doubt, no matter how many times they assure me that I can back out at any time. I will not.

I am typically a person of decision. I have no process that I go through, no analysis. I look at the situation & the answer is already there. I don’t ever remember making a conscious decision to donate a kidney to Quinn. It was something that when the request went out, I just knew, - that was what I would do (although at the time I thought it would be Gage). I’ve never doubted my decision for a second, if it was a decision.

I mean, most of you know the Roberts – who wouldn’t want to help, if they could? And I know all of you Internet Peoples (as Quinn calls us) have already helped in countless ways. And you’ve included me & Quinn in your love, prayers & good karma wishes. For this I can’t thank you enough, because at the end of the day the only thing that is important is - that Quinn gets a transplant & a chance at healthy life. A life where she gets that first kiss, goes to the prom in a spectacular dress (one with lots of bling for our Quinn!). A life where she gets to hang out with the girls at the beach, drive her mom’ second or third hand Volvo & run & play & dance.

But in the end, I want to donate for only one reason & one reason only – I love Quinn. I love Julia, Julian & Gage. And to all the Emory doctors, CHOA doctors, social workers, nephrologists, psychiatrists, transplant coordinators, I know you have to ask me the same question over & over again: “Why do you want to donate to Quinn?” And this is my final & best offer & it is enough – love.

So I sit patiently (patient as I can be), because as a good friend reminded me recently, doesn’t it all come down to one thing anyway?

Love is Patient

Love is Kind

I Corinthians 13:4a

And that is why.

I’ve been thinking a lot about Gage’s transplant this week as we embark on Quinn’s in the (hopefully) near future. We were so happy he had kidney function and that he was alive.

This was Gage’s first day back to school post transplant. He was happy too.

Word is that Cheryl is approved to donate a kidney to Quinn from her team! Completely awesome and overwhelming and kind of unbelievable. We still need approval from Quinn’s team, but we are very close. And then there’s That Liver (which we should ALL refer to as That Liver, hoping to shame it into behaving).

It’s hard to describe what going through transplant #2, child #2 feels like. I can’t really lay claim to it being new and shocking, but it is new and shocking in its own way.

The same fears are still there, but they are buried. Because Gage’s transplant was successful, I have an expectation about Quinn’s being successful. Unfortunately, there are the same risks for complications and I can’t ignore them.

Cheryl is offering Quinn the chance to stay off dialysis. She’s offering the chance for Quinn to feel better and have a better quality of life. A life of energy to match the sassy her personality embodies. It’s hard not to hope for those things for Quinn with reckless abandon.

So there is a delicate balance inside my head that is taking place at any time during the average day. It’s balancing the hope while bracing for the (scary) possibilities because we’re a family that must deal in the reality of a life of uncertainty. Most days, average days, I’m able to act and move along like your average mom taking care of regular things for our regular family. But every so often the family we really are creeps in and I fear for the lives of my kids. I wonder how could we make it through everything we’ve been through as an intact, functioning family with laughter and love and promise if our worst fears are realized.

And so, for today — most especially today — we’ll be celebrating a life of promise in front of us. And we’ll hope that Cheryl can indeed give Quinn the ability to sassy her way well into adulthood.

That’s my choice today. And I will fiercely protect it for as long as my heart will let me.

The liver is misbehaving, she is. The lab numbers were triple and this is putting Quinn’s transplant in a little bit of a holding pattern because the kidney team needs clearance from the liver team for transplant.

Quinn’s liver doc called late Friday to tell me that she wanted to put her back on Actigal. She’d taken the kids off of it in December because she’d said there was research that showed it wasn’t all the helpful and in some rare cases it could hurt the liver. But when Quinn was on it, her liver numbers were stable. By “stable” I mean they were high, but they were normal high. Quinn’s high. Slightly fluctuating week to week.

She said there might just be some “sludge” caught in the liver and “let’s just make everyone happy” and put her back on it to get the numbers down. So that is what we are doing.

We are also going to have a liver ultrasound in the next few days to just have a look-see. Maybe something will come of that, maybe it won’t.

I’m not very worried about this development even though it slows us down because Gage and Quinn have always had stable liver function and the doctors said failing livers were well in their futures. I suspect it was either a fluke of the lab (unlikely though) or that the Actigal really did help her and we’ll see a decrease in numbers soon (couple of weeks?).

This is just one of the things that come up. The unexpected. The one situation that makes you have to go slower with the plan. I can’t say I’m surprised. I can’t even say I’m freaked out.

And that really just speaks to how trained we are not to get our hopes up to a level where you fall hard. I suggest you do the same. Let’s all just chill while we wait.

Cause waiting? That we have and can do.

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.

For some reason today I’m in tears about Quinn’s impending transplant. Sometimes when this happens - and I don’t always blog it - I look at pictures of the kids when they are happy. This is one of those times.

Semi good news from Cheryl’s team that she is probably a good candidate for kidney donation. They want to just double check a test. Now her information will be given to the pediatric team of Quinn’s and they will decide if the kidney is a good fit for Quinn.

I know this all sounds extremely posititve. But I beg you - do not get excited right now. Cause you know it’s not really real until they are both wheeled into the operating room. Do not make the mistakes of our past - do not assume it will all work out. Because there is still a chance it will not.

We’re not exactly pessimistic. We’re just not overly hopeful. We’re hopeful. But not HOPEFUL, HOPEFUL.

And if you know what is good for you…you will handle it the same way.