Talking about the realities with our kids.

Me: “MRSA can be deadly, you know.”

Gage: “Yeah, Quinn, I’ve had that too.”

Simultaneously Quinnlin: “WHAT?” and Julian: “Don’t tell her that.”

Me: “It’s the truth. It’s not like we can hide those facts Julian, plus we have to tell them the risks. We can’t protect them forever.”

Julian: “Geez.”

————-

I brought my daughter to the E.R. the Sunday before Memorial Day because A) We always end up in the E.R. on a Holiday weekend and B) She had a nasty looking spider bite. It was raised and red and hot and hard to the touch and in the back of my mind I sort of knew it was probably MRSA but spider sounded less scary and so I went with that.

It was, of course, MRSA. Also known as the scary, hard-spelling name “Methicillin-resistant Staphylococcus aureus” which is known to send fear into the hearts of many immunosuppressed people and their parents. It’s horrible to fight off, and can mean days in the hospital for kids like ours. Gage ended up in the hospital for almost a week when he had it and we tried the E.R. twice to drain it.

I’ve been thinking a lot about this conversation because I started to wonder if I throw too much at the kids too soon. Do I give their brains too much to handle for their age? For their development? Does sharing the truth and so much information make it easier or harder on them?

The truth is I haven’t a clue. I can only do what I promised both kids a long time ago, that I would always be honest with them about their healthcare. One of the rules in our caregiver/caregivee relationship is that we’re honest with each other. They have to trust that I will have their backs when they need it and I have to trust that they will be honest with me so I can make informed decisions with them about their healthcare.

Telling my kids they are more susceptible to get a deadly infection isn’t at all what I’d pictured my life to be like before I had kids. There are days when I feel like I am just monitoring the Dos and Don’ts of living a life-like theirs…

  • Take your meds!
  • Get regular labs!
  • Have regular kidney (and liver) clinic visits!
  • Wear sunscreen!
  • Stay out of the sun if possible!
  • Wash your hands!
  • Don’t touch that bird!
  • Don’t feed the birds!
  • Don’t touch that ______!
  • So and so is sick, so you can’t see them today!
  • Listen to your body…

There are some days I can’t believe the conversations I must have with my kids, but then I realize I can only do what I think is best and helps prepare them. It’s hard to talk about death and the realities of a disease that is unpredictable.

Even though it’s hard, honesty always wins.

——

Tips on talking to your kids about the harsh realities of their condition/treatments.

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Spoken in the Mutant Family Household, ER Edition

Quinnlin (on the way to the hospital, reaching for lip gloss in my car): “Can I use your lip gloss?”

Me: “Of course, but you know we’re on the way to the hospital, right? You probably don’t need lip gloss.”

Quinnlin: “When your in an ugly hospital you have to look pretty.”

————-

Quinnlin (walking into the hospital): “Is it weird that I like going to the ER?”

Me: “Yes. It is.”

————-

Quinnlin (at ER): “They’re not going to admit me?”

Me: “No, they’re not.”

Quinnlin: “That’s not fair! Gage gets to get admitted all the time!”

 

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Surrounded by the love of a public school.

2013-05-06 01.42.33For the last nine years, we’ve sent Gage and Quinnlin off to our small neighborhood elementary school. This week marks the transition to middle school for our youngest, which means we give up the safe, nurturing environment of that special place impacted our kids’ lives so greatly it’s nearly impossible to put it into words.

The school administration and teachers saw our kids through some tough times. I wrote about what they saw Gage through and how much they impacted him. That post was two years ago this week.

It’s a school that could have done less but always chose to do more. Gage could have been sent away from the school but they chose to work with us and his healthcare team to keep him in school as much as possible. When Gage went on dialysis the principal sent three people (2 teachers/1 nurse) to an all-day seminar on how to support a kid in kidney failure. When I approached the principal about it because I was overwhelmed with the gesture she simply said, “It was the right thing to do.” Likewise, when Gage was barely hanging on they changed his schedule, offered different support, pulled him out of non-required classes to lessen the burden on him.

The years of the transplants the kids were sent off with warm wishes; Gage a Good Luck with Your New Kidney party and a welcome return to everyone wearing his favorite color, yellow and for Quinnlin, a send off parade around the classroom with everyone wearing her favorite color, green. This is a school community that loves “their” children. A school that wants to build community within the walls, shaping budding kids into compassionate adults.

The teachers and administrators did so much for my kids…

They made changes to IEPs quickly so that modifications could be nearly instantaneously started.

They hand-selected teachers for the kids throughout the years to match their needs with the teaching styles. They really thought about what kids would bring out the best in kids and tried to make sure their paths crossed with my kids.

They encouraged friendships and protected them when they were their most vulnerable.

They taught the way the kids needed it and didn’t require the kids to change to their teaching style. They researched new programs to help them in the way they learned.

They surrounded them with love and compassion. They were our lifeline to stability the kids needed at a time when there was little stability.

We’ll be forever grateful for all the school educators and administrators has done for our kids. They will never know the depth of our appreciation nor will they ever truly grasp what a positive impact they’ve made in the lives of two kids. To all of you, our undying love and gratitude always.

In a lot of ways over the last nine years, they restored our faith in humanity.

——–

A few weeks ago Quinnlin’s classmates in 5th grade were asked to write different essays to possibly be read at graduation today. None of Quinnlin’s were selected but she wanted to make sure one teacher heard her so she asked me to record it and post it to YouTube. I know this is about one person, but the sentiments Quinnlin expresses in this essay are what we feel for every administrator, educator and staff member in our special little, public elementary school.

My Inspiration, Ms. Blackmore

 

 

 

 

 

 

 

 

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For better or worse. Or worse.

I am not sure when I knew I’d get through some hard times with my marriage to Julian intact but I am sure I thought it would be when we said, “Yes” and “I do” in 1994, but it wasn’t. That day as people laughed and smiled around us and I happily bounced up and down when the minister declared us married, I’d only pictured the “Better” of the Better or Worse scenario I vowed to that day.

When I said those words that beautiful day in June to my beloved, I wasn’t thinking clearly. I was in love and being in love had seeped something into my brain and made me utterly stupid.

It’s been challenging raising Gage and Quinnlin, our kids who have complex special needs including failing kidneys and livers. Throughout our 19 years of marriage (or the more impressive nearly 20 years) I’ve often wondered if I can declare the one moment I knew for certain our relationship would be long-lasting.

I met Julian outside of the apartment buildings we lived in when I was 26 and divorced for a couple of years and actively dating around. That sounds bad, but it’s the truth. If I met someone that intrigued me for any reason, I went out on a date. Julian (then named Jeff, after a dog, long story) didn’t intrigue me a bit. Maybe it was the not ideal close proximity of our living quarters as we could see into each other’s windows with little effort, maybe it was that he didn’t seem interested. Then he became interested and wow, was I ever intrigued.

On a Saturday night I sat outside with my mean, badass 12 pound dog Cleo refurbishing a kidney bean shaped (oh the irony) coffee table. Years later I would learn Julian threw an empty 12-pack beer carton into a huge trash bag so he would have a chance to walk to the dumpster and strike up a conversation. At the end of our conversation, with what appeared as an afterthought, he leaned back around his opened door and said, “Hey, you want to go grab a beer?” I did, obviously, which led to more dates and a lot more beer. Doesn’t every great romance begin with a dumpster and beer?

We had a 3 year plus romance that involved a lot of drama. We dated other people, had a 3-month break in which he figured out he was undeniably in love with me, and we lived together for two years before he proposed on New Year’s Eve. It was the New Year’s Eve before the start of the absolute last year I was giving this man who was not letting our relationship progress.

Twelve hours after his proposal he asked me about the amount of my debt so we (he) could pay it off before we married and he wondered if I wanted children. He called my dad and pronounced our last name wrong, spilled hot coffee on his bare chest and then asked me to never prepare the grits that’d I’d been making during our courtship. He woke up that morning with the dismal realization that he would have to eat them for the rest of his life. This story of the bliss after the night he proposed? Not a lie.

Maybe I knew our marriage would survive when he held me on our filthy kitchen floor while he rocked me back and forth as I was weeping and told me I was the right mother for our 9-old-son, who was suicidal. “You are the only one who really knows him, you are doing right by him, and you are the perfect mother for him. Don’t worry, because when you don’t know it, I know it enough for you.”

Perhaps it was when I was holding our days old daughter, discussing her diagnosis and how we each unknowingly passed on a recessive gene causing polycystic kidney disease and the doctor said, “With kids like these, you have to take them home and love them as long as you have them.” I remember our eyes locking with disbelief. No matter how many times I write about this experience, it does not get easier. I’m at peace somehow knowing no one besides Julian can ever share and understand that devastating moment with me.

It might have been when I heard the words “developmental delay” as I held my beautiful 18-month-old son in my lap and a geneticist carefully measured the width between his eyes and ears and the bridge of his nose up the forehead. Minutes later, the same geneticist declared there were eye and ear spacing concerns, and asked if there was any chance I could be blood related to my husband. No, by the way, there isn’t.

Maybe it is the humorous times that bind us together. I remember the time Julian was eating French fries in the back seat of our car while holding a throw up bucket for our sick son, and when we joked about how we forgot an entire year of our marriage – we skipped number 16 altogether – and about how we know we’ll stay together because we’ve agreed that the first one who leaves the marriage has to take the kids. “I’m not doing this alone!” we’ll both say.

It might have been when we cried and held each other tightly when we realized both of us wouldn’t be able to donate a kidney to either of our kids. Rarely falling apart at the same time, I snapped out of it and said, “We’ll find another donor, we will.” We did. In in 2007 Gage had a successful kidney transplant because of the generosity of Jody, a member of our church.

In preparation for her kidney transplant a year and a half after her brother, Julian held our daughter down for a blood drawn confidently and calmly whispering in her ear, “Quinny, it’ll be over quickly sweetie, just a few more seconds.” That was another day, on a long list of days, that I witnessed the love of my life shove down his own fear to comfort one of our kids with the confidence he didn’t feel on the inside. His confidence was the same on Quinnlin’s 8th birthday as she was rolled away from us to get a new kidney from Cheryl, (another generous) church member. They’re Methodists, in case you’re wondering.

Still, it could have been when Julian was laid out on the floor, restraining our combative son while we were admitting him to a psychiatric hospital to keep him safe. While Gage was screaming to be let go, my husband held tighter, tears streaming down his face, saying, “Gage, quit fighting me, I have you, you’re safe.” Then again, it might have been when Julian looked at me a little while later when he forced out a barely audible, “I can’t believe this. How is this happening to us?”

Some of the joys we celebrate seem easy to everyone else I suppose, but we know what our family has had to go through to obtain the first steps and words, the skills needed to pick up a single tiny Cheerio or string 10 beads on twine and our kids’ hard fought right to be heard among their typical peers. We were together when we heard that our kidney donors were approved to donate to the kids and when we knew our son was out of immediate danger of killing himself, and we’ve been together witnessing our kids’ successes as they mature. We know that as we celebrate transplanted kidneys still working, the kids will need another and another, as well as new livers. As much as the sorrows sometimes seem overwhelming, they are the reason the joys are the foundation of our dual gratefulness and our seemingly desperate need to appreciate this life, together.

My husband laughs when I say that between he and my other husband, he’s my favorite. He can handle me saying I have a Twitter Boyfriend, a Doctor Boyfriend, or Girl Crush. I love that we can joke about failing kidneys, holiday emergency room visits, mental hospitals, and how we’re – wait for it, be jealous – on the Top 10 Customer list of our pharmacy. We can laugh about all aspects of our relationship and most especially our shared, tragic experiences. There are no other people we could each be with that can ever understand the equal parts hilarity and ridiculousness that has been our life together. There’s a certain comfort in knowing that only the two of us shared in it all.

That makes us pretty much ruined for other people, doesn’t it? Which helps with the longevity of our marriage because we know there aren’t any other people out there that would have us with our baggage.

And that is just fine with me.

Three kids in the world have the syndrome our kids have and two of them are ours. While we’re obviously really horrible playing the genetic lottery, we’re pretty good at the marriage game.

Well played Julian, well played.

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This Mother Wants

photo[1]On Friday I was in an ER room with my son, who now feels fine (I know!), he’s playing a game on his phone and holding a stuffed animal, which is what he does when we’re here. I was thinking of course we’re in the ER because it’s Mother’s Day weekend and we’re usually in the hospital at some point during a holiday or holiday weekend and even it’s a greeting card holiday it still counts.

Honestly? This Mother’s Day I want to tell you exactly what I want and what I bet a lot of other moms want.

I want a zero balance at any and all children’s hospitals and healthcare practices.

I want a magical filing system that magically files educational and medical paperwork I need to have organized so I can magically find it when someone else needs it (or I have something to prove to someone).

I want a year of holidays not spent at a doctor’s office, ER of a hospital, or trying to decide if we need one of those because of a sick kid.

I want every IEP meeting to happen without tears.

I want my kids to never feel they are stupid.

I want my kids to have enough friends they can always have someone to call.

I want to never have to admit my son to a psych unit again.

I want my kids to feel confident.

I’d like never to think that my kids have to get new livers and then new kidneys and again new livers and etc.

I would love it if the word retarded was extinct.

I wish kids didn’t have to celebrate birthdays and holidays with an IV in their arm or a port in their chest.

I wish all kids felt safe in their homes.

I wish another family never heard, “Your child won’t make it.”

I wish more manufacturers would make teen clothes without hard-to-do closures.

I would love to have an insurance policy that is less cost than our mortgage.

I want all doctor offices to have staff that are friendly, helpful, and who do not crack their gum.

I wish to be a comfort to my kids when they are hurting.

I would love it if all mothers were respected, especially those without their children.

I would love for all doctors to appreciate a mother’s intuition about their kids.

I would love for all of our doctors to provide me their email addresses freely.

I wish I could take away the physical and emotional scars my kids have as a result of disease and medical intervention.

I wish my kids didn’t fight me on taking showers and putting away their clothes.

I would love and cherish an uninterrupted nap once a week.

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When it’s Not Fair for Our Kids

Spring Break Round 1

Spring Break Round 1

In what can only be described as Not Fair, Gage has decided to cancel his Spring Break Redo trip we had planned for the weekend.

Over a month ago during spring break, Gage ended up in the children’s hospital in New Orleans and then back in Atlanta for admittance. It ruined his trip cutting it off a few days early and the couple of days he was there, he was in bed in a hotel room not even waking up long enough for a voodoo or ghost tour…the true indication he wasn’t feeling well. It was a bad cough, possible infection, possible pneumonia, you know, typical stuff for a kid with a compromised immune system.

We’d decided before he was released from the hospital that we would pull him out of school on a Friday and let him have a Do Over. That Do Over was scheduled for today through the weekend. I know. We’re awesome like that.

A couple of days ago he started coughing. It’s not bad, really, but it sounds suspiciously like the cough that Ruined Spring Break Round 1 so we were all a little nervous. This morning, the day they are supposed to leave, he decided he didn’t want to risk going only to not be feeling 100% Gage.

This is what it’s like sometimes for the kids. They often have to sacrifice things in the name of their health. We strive to give him a childhood filled with experiences that lead to memories we can all hold on to no matter what their health status. We aren’t too keen on keeping them in a bubble and we are often advocates for the opposite actually. We are pretty loose with keeping them in the bubble, specifically because they are kidney transplant recipients and for our kids, when we say “you never know” what is going to happen, we truly don’t but we know something will happen. We also made a promise to ourselves and our kidney donors that we would help them live their best, biggest life and for us that includes any and all experiences we can provide.

I’m sad for Gage this morning because he isn’t going on his Spring Break Round 2 trip and he was pretty upset about it too, but for just a bit, then he rebounded because that’s what our kids do. They know their disease impacts their lives still, even though they are healthy kids with new-to-them kidneys. They carry on because they know.

What do they know? They know disappointment, but don’t all kids? I think for our kids though, the amount of disappointment sometimes just feels like too much. Too much if you’re a kid who just wants to go on spring break. Today is one of those days.

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Where I Am

photo

  • Every once in a while I get to write that I’ve written in some other places and today is one of those days.

BlogHer - I’m so proud to have a post on BlogHer for their Being a Mother Made Me series (as part of their Mother’s Day Eve Celebration.) This post on there starts out with my cherub of a little sweet girl telling me, “I *&$#ing hate you!” and don’t I know that is just how you want to start May. Being a Mother Made Me….Laugh. It makes me laugh still.

Being a Mother Made Me Laugh

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Aiming Low7 Bad Date Stories…yeah, these stories are from my friends (thank you friends). One might be one of mine. 5 Annoying Things in Healthcare, because, you know.

————-

Hopeful Parents – Writing about laughing, which apparently I am writing about a lot. We laughed.

 

 

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Among My People

Dr. Lisa Guay-Woodford, tireless advocate for children impacted by PKD, PKD Foundation Board of Trustees member, amazing doctor and person.

Last Friday I traveled to New York and carried my bag off the plane to load them up in the car of a friend who lives there. Michele, co-coordinates the chapter that serves the ARPKD/CHF and Pediatric ADPKD population through the PKD Foundation. It was good to be there.

We were attending a conference we’ve been working on a long time to plan with the PKD Foundation. We’ve been wanting to do this event for a few years and this year it finally came together.

We’re so proud. Not for ourselves I mean, we’re proud of the PKD Foundation. For as long as I’ve been involved (11 years) as a volunteer, the PKD Foundation has supported our family by providing support, education and advocacy on our family’s behalf and the chance to connect with families I’m sure will forever be in our lives.

In addition to what they’ve provided in those areas above, those things have made me a better advocate. That’s probably the most important part of what they’ve given me that’s a tangible, measurable thing in relation to imporoving the day-to-day life of the kids.

What is not so tangible way is that those impacted by PKD in their kids are all connected in a way that is unexplainable, but yet, in a familal way because of our shared worry, experience, fears of the future and what may come.

In other words, our personal tragedy brought us together.

I’ve written a lot about how I am a different kind of mother than I would have been had it not been for the kids’ multiple diagnoses. Meeting the people I have I know have impacted me in immeasurable ways and probably in ways I don’t even comprehend right now because my kids have a long way to go in their diease progression (future liver transplants and additional kidney transplants).

Last weekend renewed something in me and I’m not sure what but probably a new sense of purpose. It’s probably the connection I made to people new to the disease. Watching them navigate it all with their much younger kids is making me reflect a lot on where we’ve been and I’m grateful. I’m grateful to have had people lead the way for me and I’m grateful for the chance to talk about my kids and how amazing I think they are for still smiling after surviving what they have. I hugged a few moms and dads who are were I was 1o years ago and I’m grateful for the chance to (hopefully) make their path easier.

On the path through our family’s journey, I’ve climbed (and rested) on the shoulders of a lot of people who pushed before me, and they’ve made my journey easier. Most especially, they made me not feel so alone.

Special thanks to Dr. Lisa Guay-Woodford, Dr. Jeff Saland, Dr. Lisa Satlin and Mt. Sinai Hospital for their help and facilities for the event. You can’t believe how much they and the other speakers gave us in terms of their time and expertise. Thank you Nicole Harr, Dave Switzer, Michelle Davis and CEO/President Gary Godsey at the PKD Foundation for your committment to continuing education for the families impacted with childhood PKD.

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Life of Immunosuppression

Gage approved this photo…

Sometimes parenting a couple of kids who are immune compromised is something I don’t even think about, not really.

Sometimes parenting a couple of kids who are immune compromised punches me in the face, as was the case in the last 2 or so days.

Julian and Gage were traveling for Gage’s spring break, visiting the BFFs parents in New Orleans and then to spend a couple of days in the city in a haunted (alledgedly) hotel. He’d been seen a couple of weeks earlier at urgent care, got antibiotics, but a small cough was persistent and of course worsened the second he left our fine city.

Fast forward a couple of days and it went down like this:

  • Gage didn’t want to do anything for an entire day. Ghost tours, cemeteries, voodoo stories could not get him to leave the hotel room. You know something is wrong if he’s not running towards those things, he does love a good cemetery. 
  • Julian called and asked me what I thought which is always tricky, you know? Our goal is to keep him OUT of E.R.s, and not having the benefit of knowing which urgent care to bring him to (Minute Clinics are out, too complicated of a case with being post transplant). I couldn’t get over what happened two years ago (pneumonia) and thus made a pretty quick call to get him in and seen at Children’s in NOLA.
  • Called our team to give a heads up, emailed med list to Jman, gave Jman info to get to our team when the time came.
  • An IV, x-ray, and labs later it was suspected “early pneumonia” or a “lung infection.” There were discussions between NOLA neph and our team and the NOLA team said something about putting Gage under to get sample from the lung and then the Atlanta team said no, just bring him in two days from now at regular clinic and we’ll check him out.
  • That didn’t sit well with me because it’s a pretty wide spread from Admit to See Ya in Two Days, so Julian packed up at the hotel, drove back, arrived at 2:30am and Gage got back into my car and we headed to the E.R. Yeah, that was (not) fun.
  • Another x-ray (yeah, I had NOLA give us a CD with the x-ray but it wasn’t readable by our hospital) and they ruled out pneumonia but given that his creatinine had bumped up and freaked us out so they wanted to get some liquids in him.
  • He was admitted right at 7am shift change (We were so lucky because an hour earlier and we would have had to run through his entire history/story and meds with two nurses within an hour) with the hopes we could get some fluids in him, re-draw labs (which he slept through) and if lower, we could check out.
  • It was just a tad lower, but enough. So home we went.
  • Gage declared this trip “Worse Spring Break Ever.”
  • We agreed with Gage’s assessment.
  • We’re going to arrange a long weekend trip back to NOLA in the next couple of months, and we’ll probably pull him out of school on a Friday to do this. We’re very okay with him missing school for this Spring Break Redo.
  • He slept 16 hours straight when he was in his own bed (not to worry, we woke him up to take meds and later he was concerned he didn’t take them because he didn’t remember sitting up in bed and taking 11 pills in one swallow with chocolate milk).
  • He still amazes me. With the exception of being really pissed/upset the moment when he had to be admitted, he was pretty humorous through it all even saying, “Yeah, this place is like a second home to me!” when the doctor asked him if how he was and if he was comfortable.
  • For the record, immunosuppression sucks.

Gage quote of the last few days…“What’s a vacation or holiday without a hospital stay?”

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Six Years of Kidney Function

A surgery before transplant.

A surgery before transplant.

Six years ago today I was sitting on the bed with Gage, who was a little overwhelmed that he was about to be wheeled into surgery just minutes after we heard the words, “Her kidney is perfect!” from the team following his kidney donor’s surgery.

Post kidney transplant 3/07

Post kidney transplant 3/07


Jody was donating a kidney to our son, Gage, who desperately needed it as his health was worsening and even though we didn’t know at the time, the experiences of his medical intervention were impacting his emotional health and his life would forever be altered.

Four days post transplant.

Four days post transplant.

Over the last six years Gage has been through a lot and the one thing that is a constant in my mind is that I am so grateful Gage has been able to move through his life without having to be on dialysis. I couldn’t have imagined what we would face just one year post transplant and it was easier to face with Gage’s physical health intact.

Thank you Jody for your love, prayers, kidney and sacrifice. I know as a mother you understand. I know over 6 years ago you looked at your kids and thought about how it might feel for me to look at mine, frail and withering away before my eyes. Then you sent me that simple email asking me to send you a donor package.

“What? For YOU?” I typed, or something like that. Those simple words were the start of the journey that led us to here, where I get to tell you thank you. I get to tell you that over 6 years I’m still in awe over your gift as I ever was, including the day your kidney left your body that didn’t need it and entered the body of a boy who did.

That boy is able to move in the direction of his dreams. 

Jody, for as long as he has your kidney and in all the days remaining we will forever be grateful for chances your gift has provided. We love you. And we still love that kidney, too.

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