The scene, I am snuggling with Quinn (which we often do) and Julian tells lame joke. We don’t laugh.

Quinn: “You laugh when no other people laugh.”

Which made us all laugh.

—————

Gage said tonight:

“You know when I was on dialysis and they took the dirty blood out of my body in one tube and they put the clean blood back in? Well, why don’t they just do that with the ocean?”

Smart boy.

—————

We were discussing Julian’s childhood home and it’s contents.

“Yeah, you were the one that let your bear from your childhood there alone. All these years! That is so mean.”

—————

Quinnlin (upset because she, Gage and Julian are talking in my ear at the same time): “You never listen to me!”

Me: “The fact that I just heard that proves that I AM listening to you.”

Quinnlin: “Well, well, um…yeah….epp…well….ARRGH! I forgot.”

—————

Various way Quinnlin is currently using the word “fair” (pronounced “fai-OR” because Rs are a problem)

“That’s not fai-OR!”

“You’re NOT fai-OR!”

“Mommy, you are SO NOT FAI-OR!”

“This whole world is not fai-OR!”

Just one of the various ways I am responding and literally channeling my own mother. “Who told you it is fair? It’s not fair, baby.”

—————

The scene: We are leaving the pool past 9:30pm and he called front seat. I say no because Quinn is riding up front because he rode up front on the way there. He starts screaming! Wailing! It was very dramatic!

Gage: “I am walking home-let me out-I hate this car-I want to leave-I am getting out-I am leaving this stupid D cuss word car! RIGHT NOW I AM LEAVING YOU D CUSS WORD PEOPLE!”

Julian (calmly): “Okay.”

Me (calmly): “Okay.”

Gage: “You! Mommy! YOU! If you die! When you die! I will not even cry! DOYOUHEARMEIWILLNOTCRY!”

Me (calmly): “Well okay. Quinn, what about you? Will you cry when I die? What about you daddy?

Quinnlin (looking like huh?): “Yes, I would cry, I know.”

Julian (calmly): “Yes, but you are not dying mommy, you are not dying okay? (like, don’t you ever leave me because I cannot do this alone).

At home, Gage falls asleep in about 5 minutes. I have the missing margarita.

—————

The day after the day of  The Incident Where My Son Said He Would Not Cry When I Die we are dancing to cable TV music radio and having a great time before dinner.

Gage (leans over to me quietly): “Mommy, yesterday. When. I said. That thing about you dying and me not being sad? I did not mean that. Sorry.”

————-

Gage is having some strange symptoms with headaches, vomiting and pain in the corners of his eyes.

Me (after Gage goes to bed): “What about his eyes? I’m calling the doctor tomorrow.”

Julian: “What could it be? I mean with any other kid you can just write it off but noooo, not with us.”

Me: “It’s probably some rare thing that is happening because of his drugs, disease, some new thing, some new thing that is not…”

Julian: “Stop it. Because I’ve already thought that three times.”

(This is how we think).

—————

Me: “Whose idea was it to live together, raise kids together, and work together?”

Julian: “It was such a good idea before we put it into practice.”

For the last two weeks I’ve been working on a post about a breakthrough that we had with Gage as a result of him realizing, quite shockingly to all of us, that he was able to feel emotion (that wasn’t rage) again.

No one was as surprised as I was to be comforting my boy in an embrace where he didn’t push away as he’s done for the last two years.

When I was working on the post (TBD when I will hit publish) I got to thinking about what it’s meant to have a depressed, sometimes suicidal, raging child who can’t speak of any feeling; good or bad. I am so, so sad for what all of us, but most of all him, has lost. The time devoted to keeping Gage alive and off the brink of disaster has been the focus for many months.

During the same time we were advocating to keep Quinnlin off dialysis (against a system that fights against this course) for a preemptive kidney transplant. In short, for the last two years, we’ve been keeping our kids alive. I didn’t let myself believe that while I was in the middle of it day-to-day and it’s starting to hit me now with great force. I’m having some parental PTSD while we’re working our way out of the last several months.

There were many, many times when I thought my son’s (un)predictable rage and sadness would mix into a terrible tragedy and for months, with the exception of when we all slept, he was on 24 hour watch. It wasn’t hard for him to be in our sights because he didn’t want to go outside, play, or communicate. He had no opinion, except rage. There was nothing, except maybe a glimmer of love for our dog, that he had joy for whatsoever. We were desperately seeking help for him and yet, it still took nearly two years and a mental health crisis to get him (and all of us) on the road to healing and recovery. For this bout anyway.

During the horrific times, when we were going through the motions of being a family and hanging on any way we could, I found the nights to be the worst time for me personally to process the pain of Gage’s sadness and Quinnlin’s failing health. J-man went to bed first and I would follow a few hours later when the house was quiet. I’d catch up on work, TV, crafting or writing. I’d eventually make my way upstairs with panic and fear.

I’d check on Quinnlin (pain killers in hand) who nearly always was awake or sleeping poorly because of the effects of failing kidneys because of scratching her skin into open wounds and I would comfort, administer meds and doctor her with band aides and then I’d go to Gage’s room.

Dozens of times, maybe more, I’d look at his door knob and pause. I’d briefly close my eyes and hope and pray I didn’t walk in on my son hanging from his loft bed.

It wasn’t until recently that I let myself believe that each time I turn his door knob now he will be soundly sleeping with Sally and Vicious tucked in his arms under the weight of his heavy camouflage blanket. And with that I’m slowly releasing the images of tragedy. I’m starting to realize that maybe the feelings and images may never completely release me.

So a little bit ago, Ellen, mom to Max and Sabrina, wife to Dave and famous blogger of special needs parenting tweeted that she wanted to get a lunch planned during BlogHer which is fast approaching – August 6-8 in New York. I’m thrilled to be attending to represent the new social networking site I started with Dawn.

I also get to meet some fantastic bloggers I’ve been reading for your years and I’m looking forward to being overwhelmed and tired and excited. I can’t wait for some of the sessions; so I’m looking forward to learning more about blogging and social media and how we can grow SupportforSpecialNeeds.com and help the special needs community engage in another way. Not instead of, but different.

So anyway, Ellen of Love That Max, is getting the lunch on the BlogHer calendar for Friday and all the information is here. As a bonus for the Ladies that Lunch (and blog special needs)..Support for Special Needs is giving away an AMEX card and so is Ellen, plus we’re throwing in a few Starbucks cards, because we all know we’ll need some caffeine. (When don’t we? I ask you.)

Here’s all the info…hope to see you at the lunch that Ellen famously titled “A lunch for parents who blog about kids with special powers.“  Here’s all the scoop on her blog! Thanks Ellen!

While you’re at it…go vote for her on the Best Blog by Parents Connect.

The Quinncess will be returning from camp on Saturday.

I will be returning to med duty, whining control but all the while I’ll be getting some serious snuggle time.

The Ofieses in Gorga

By: Quinnlin Roberts

Made in July

there is many ofieses in Gorga.

theres Blue ofieses

red,

Gren,

and yellow

My Mom and Dad have an ofiese to. It is red

The have inpertent stuff to do.

Thay have alot of phon calls.

Alot of people get braks.

My Mom and Dad get to have brakes.

the end

Translation, including spelling, capitalization and punctuation are as Quinnlinn wrote it. In July.

Because by this photo you will know…

• We go through a lot of prescription bottles
• We often let the kids sit on the counter if the play warrants it
• We don’t regularly put seed in our bird feeder
• What Gage’s hair usually looks like
• While you will see sunscreen you will also see 4 little bottles for swimmer’s ear treatment
• A brownie pan that is clean but on counter days from when said brownies were eaten
• I have no idea what Gage has between his fingers

Nolen, 6/25/10-7/1/10

I’ve recently been supporting a family who had a prenatal diagnosis with ARPKD. The dad contacted me through the PKD Foundation looking for support and information. We talked several months ago and as their pregnancy progressed, I got to know them very well. They had their son Nolen nearly two weeks ago and he died after 6 days. It was very painful to watch them lose their son and while I know they don’t mind sharing Nolen’s story publicly I’m not sure how personal I want to get into his story.

They are okay with me sharing how knowing Nolen has affected me because they want the world to know him. He was beautiful and they were loving, protective parents while he was here and they miss him terribly. Their devotion to him has impacted me greatly and I’m finding it difficult to return to my normal. Maybe I won’t return to my normal and maybe that is the point.

Becca, Josh, and Nolen’s siblings, Caleb and Havanna won’t ever be the same because of an ARPKD diagnosis and because of what caused his death. As I attended the visitation with my family and the funeral with my kids I thought a lot about what has been taken from those affected by PKD.

Lives. First and foremost it’s taken the lives of amazing people and amazing babies and kids that would be amazing adults. It’s taken peace of mind for parents and kids and family and friends, watching their loved ones suffer the impact of symptoms and treatments. It’s taken time and quality of life from people; people like us. My kids. That’s just some of what I think  about when a child dies from PKD.

Quinnlin and Gage’s lives are impacted in ways I’m all too familiar with and in ways we have yet to know. They’ve suffered countless days, months and time from their lives. From our lives. I was looking over pictures for last Friday and while I didn’t post a usual Friday photo I did see this one that struck me to the core.

I have my kids with me and I am grateful for that, believe me. But I am still grieving after all this time the impact ARPKD has on my family and most especially my kids.

While supporting a family through unbelievable tragedy is one of the best reasons I can think of to be a volunteer with the PKD Foundation, it is also one of the hardest things about what I do. It is hard because it brings up all the fears I have ever felt about my own kids’ mortality. Every fear I faced early on, especially during The Fog, that I tried so hard to push aside, stares me in the face while supporting a family with a prenatal diagnosis.

I’m trying to find a way to process what I’ve been through with them but feeling like it’s unacceptable to voice my fears with their loss because of what they have lost and yet, it’s all connected. I realize this post should be only about Nolen, but Nolen is connected to my kids because of a diagnosis. So it’s difficult to write about one without the other when my heart is breaking for his family, for whom I care about deeply.

Even though not doing this volunteer work would mean I don’t have to face my own fears quite so often, I cannot give it up because meeting Nolen and getting to know his family was an honor I will never forget. And I have and will cry many tears for his life cut short and for his parents and siblings who miss him so profoundly. Mixed in with the tears for him and those who love him, are tears for my kids and the other kids I know with failing kidneys and livers for the lives they should have had and for all of the unknowns they face in the future.

Gage has been wanting to change out his loft bed for his late grandma’s bed (antique 4 poster, not girly) for a few weeks and because his room was impassable we thought a cleaning out and bed swapping day would work for this past weekend.

I did not love this bed. During the Year of Dialysis (aka The Year of Little Fun) we got him the bed on a (bad) whim and (hated it) set it up for him. It made him happy. I had to climb those stairs numerous times to kiss incisions, deliver pain meds, inflict painful shots, wrap cold packs on sore muscles, and for weeks plug in and carefully wrap one hip before bed and and again during the night with a heating pad. Occasionally his catheter dressings would start to peel off and would need extra taping or to to be completely changed. So up I went. Sometimes I climbed into that bed, hit my head on the light or ceiling, to scratch the back of the boy who couldn’t sleep because of prednisone. It was the same bed the boy I love climbed into and wept because he couldn’t find the words for the pain inside him. He crawled in the corner to get away from me, as far and as high as he could. It is the same bed he used all of his body’s strength to shake out of rage.

I did not love this bed.

Once we got past the 15 pounds of excess paper and recycled it and took the broken toys (and trash) and tossed it, we moved on to his collections. Let me name them for you: Stamps, Coins (few), Snake Skins, Cicada Shells/Skins, Rocks and Nature Items (like sticks, tree bark, and pelican head). I know. Don’t judge. Although I must admit we did think the (now abandoned, thankfully) pencil shaving collection was odd.

I’d planned on giving away the loft bed on Craigslist but he begged to save it…begged. Gage looked at Julian then back at me, “please, we will do something with it, we will recycle it, right daddy?” During the plea he mentioned that he didn’t want to take down the band-aides. The same band-aides that have lined the bed for years.

Band-aide Stars and Battle Scars is what we call them.

He obviously needed to keep the bed. How do I know this? Because about 1 hour after it was down into many pieces he had a little meltdown and took it out on us but never said why. After we left his room to give him some time to calm down he ventured to the living room where we were and Julian coaxed it out him that he was actually sad about taking the bed down. He did want to keep with the plan to get Grandma Gin’s bed set up, but he still missed the loft bed.

We spent a good long time talking about how change is hard, even if you want the change to come. We talked about how he can stay connected to the bed by using it for different things and we’re fine with him keeping the band-aide posts. We also talked about how we will always, always help him.

I have no idea if that part of the conversation got through to him but I do know that we have to honor the suffering he went through, and well, if that includes keeping a piece of wood (or 4) lined with battle scars then so be it.

Thirty-nine months ago yesterday we were lucky enough to have our child receive a gift that saved his life from his donor, Jody. Nine months ago tomorrow, Cheryl gave Quinnlin a kidney and likewise, saved her life.

Over the weekend I was honored to be with a family who had a child diagnosed with ARPKD during the midway point of the pregnancy. He was born on Friday and is in the NICU, his parents, afraid to go to sleep and lose precious hours away from him.

As Baby N fights for his life and his parents talk realistically about his survival I’m struck again by how fragile all of our (ARPKD) kids are and I’m sad for them while grateful for Jody and Cheryl and their choice for kidney donation.

Today, even though I am thinking about anniversaries of my kids’ kidney transplants, Baby N and his parents are really the ones on my mind. It’s hard to be celebratory when we consider the world may lose another precious baby to this disease.

Because Sally deserves her own spot in the world.