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 our 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.

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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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A Brooklyn Wedding

Seven or eight years ago my sister, who lives in Minnesota, knew a young woman who was moving to Georgia and wanted to introduce us to her as a potential babysitter for the kids. We loved her immediately. We called Kate our Summer Nanny even though she was less Nanny and more Family.

She introduced us to her girlfriend, Kirsten. We also loved her immediately. Both were young, energetic, smart, interesting women our family loved being around and when they weren’t working or in school full time they babysat for us. On more than one occasion one or both traveled with us to an annual conference for the PKD Foundation. Back in the day when we used to get away for a weekend without the kids here and there, we knew the kids were safe and Kate and Kirsten were showing the kids a good time. God bless them, they spent two days with our kids at Disney World in 2007 while we conferenced, oh yes they did.

Circa 2007

One thing that is important to mention is that they came into our family when we were in turmoil and they’ve seen us through all of that in person or notes of support and love. In 2006, as Gage was getting sicker and closer to transplant while on dialysis, they saw us through Gage’s hardest days. Kate was one of the few people that could handle Gage and bring out the best in him and she did because she saw the best in him. Both Kate and Kirsten love the kids and they are special to the kids, even as they enter teenagehood (and you know teenagers don’t like anyone!).

Circa 2011

It never occurred to us that they shouldn’t be together. We watched them move overseas and begin a new life in their careers in a new country (homeland for one) we watched them figure out how their lives would be and it was together. Last summer we were lucky enough to travel to Europe to see them (honestly, they let us disrupt their lives for 2 weeks while they put us up, clearly they are amazing). We loved being able to spend time with them again.

Not long after that trip they told us they had a date to get married. They didn’t say they were getting committed. They didn’t say they were having a civil union or commitment ceremony. They said they were getting married. Engagements followed and happy news that they’d set a date for last August. Thrilled for them, we were going to make sure our family could swing the trip with money and time. We were not missing the chance to witness our friends getting married.

One of my favorite pictures, ever.

It’s something beautiful that happens all over the world. People get married. They love each other, they want to build a committed life together. As someone who also wanted those things and was lucky enough to find them with Julian, it’s inconceivable that people don’t want that same privilege for everyone.

It was a lovely night in Brooklyn. I cried when they said their vows and kissed. You know why? Because our friends love each other and got married.

Cutting the Cake on Instagram

We watched Kate and Kirsten walk down the isle surrounded by family and friends on both sides of them, a mixture of siblings and friends from childhood and college and rugby playing days. We listened as they promised to support each other in the good times and bad times and in the dreams each of them had for their lives. Gage will tell you that Kate promised to cook Kirsten dinner every Thursday. We watched the brides smile and hold hands and we watched the people who love them smile and laugh and look at them with pure joy. We met their happy parents in the receiving line and saw their first dance. We watched them cut their Rice Krispie bar cake made by one of the brides’ sisters. We saw them hold hands and laugh and celebrate.

Oh, the bliss!

A beautiful day and beautiful brides in love and starting to build a life together. We feel pretty special that we got to witness their nuptials and celebration with all the people around them that want only the best for them. If only everyone could be so lucky to witness that every so often, we’d all be happier.

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List post. Because I can.

Seems an appropriate time for a list post because, well, it’s Sunday night.

  • I can’t wait to see this documentary on an undiscovered street photographer. The story is about a guy who bought 100k negatives at an auction (under $400) and found the never known work of one of the greatest photographers in this century. I must have read about this in the last year because there was a kickstarter (or such) campagin that the guy was raising money for to get prints made and to create the exhibit artwork.
  • Gage has been sick. Antibiotics. Just your friendly weekend stop to urgent care. Last weekend it was Quinnlin friendly weekend stop to urgent care.
  • We attended an auction/fundraiser for Gage’s new school and it was so lovely. Tons of teachers there (they are so happy!) among the parents, supporters and everyone was so nice. So approachable. We had a few teachers come up to us an say what a joy Gage is to have at the school. The principal said she would take “1o of Gage!” which made him pretty proud when I told him. It was a good date night. We won just a couple of things and resisted the urge to buy a week at the beach and a tour of the show Auction Kings. The teachers at the school said Gage is a great at self advocating, which I’ve basically waited to hear for 10 years.
  • I’m worried about Lucy, The Wonder Dog.
  • Quinnlin is having horrible bout of a skin condition that is a result of her weakened immune systems and she is so sad about it. Turly if it’s not one thing, it’s another.
  • I have a client’s website that went live over a week ago after working on it for months and I’m so proud and they love it and well, it’s good to do good work. I’d recently had a client treat me badly and so I’m extra grateful for this client — one who lets us do some great work.
  • Quinnlin cussed at me. That was sort of surprising, as you might imagine. I can’t tell you what she said and the funny conversation that night, because it’ll make it one heck of story for the Spoken in the Mutant Family Household series.
  • We have a few appointments this week and labs to squeeze in with school, homework and therapy for both of the kids (If you are in ATL and need a great family, play, kid, teen therapist, contact Leigh Harris. We vouch for her.)
  • Quinnlin is giving up swimming. It was the right decision for her. She gave it 7 months but the pace was too fast for her. She couldn’t keep up with the coach’s instructions and several of the other kids were making her feel bad because of that and it was just making her feel excluded. She wants to look at a less presure special needs team.
  • The BFF has been matching our socks the past few weeks. This makes me happier than it should. Thanks Carol.
  • In a few weeks I’ll be going to an ARPKD, Pediatric ADPKD (and other cystic kidney diseases) Conference and I can’t wait. It’s been a few years since the PKD Foundation has had one of these and they are always wonderful educational experiences but also it’s just refreshing to be face-to-face with people who really get it. So proud to co-coodinate the ARPKD Chapter of the PKD Foundation with Michele Karl.

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Healing through music.

saramann_lullabies_hrA couple of years ago I heard about a baby who had been born with ARPKD, as I often do when someone calls the PKD Foundation. His name was Myles. I didn’t speak to or know anything about the family but knew of the pain she, her husband and her family were feeling having recently supported a family through the loss of their Baby Nolen. I also became friends with a family when Quinnlin was little bitty, who lost their daugther, Helen Grace.

Helen and Nolen changed me forever, as have all of the babies and children lost to the disease they shared with my children. I was with Nolan’s family during his last moments on this earth and like with Helen, I’ve not been able to hear about a baby born with ARPKD without thinking about them. Nolen’s precious little fingers, beautiful skin and plump sweet lips. Likewise, I will never forget the late night calls and emails I shared with Helen’s mom in the months that followed her passing, making me want to be a better person, a better mother.

Myles’ mother, Sara Mann, in memory of him and in honor of his twin sister, Ruby, who is unaffected by ARPKD (Sara has also welcomed another daughter) wanted to create music. It’s what she knows, what she loves. Through music, Sara says she’s been healing, “Making this record seemed like a cathartic and healthy thing to do, get me singing again and help me heal. Hopefully, it can help other parents as well. Knowing I am singing from the same heart as theirs…”

I’ve had the pleasure of conversing with Sara recently and she is every bit as wonderful as you might imagine someone who wants to share their time and talents for the PKD Foundation and for kidney disease awareness might be. She and I may have had a few moments of tears, listening to the cover song, Tears in Heaven, at the same time. We also shared a laugh or two, at a shared sense of humor.

The album, Lullabies, is just released today, and I suppose with it, some tears. I know I won’t ever hear the cover song, Eric Clapton’s Tears in Heaven, and not think about baby Myles. Sara sang the song with Billy Ray Cyrus, and it is beautifully performed. I heard her on a radio blog show the other day say this is also an album for anyone who wants to celebrate life, and who want to enjoy music with their children. In other words, it’s an album for everyone.

iTunes link to the album, Lullabies

Sara Mann Music Facebook page. On Twitter as @SaraMann and visit her site at SaraMann.net.

Sales benefit the PKD Foundation. I’m so grateful to Sara for using her gifts to share her story and help others heal in the process.

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