Tag Archives: chd

When a picture’s more than a picture

We live in an age where people are increasingly over-sharing, over-posting, over-exposed. And — I admit — I’m as guilty as the next person. I am an open book. Too open? Maybe. And, my greatest weakness is posting photos (upon photos … upon photos … upon photos) of my family’s adventures. I’ve heard, more than once, from people in various areas of my life to “put down the camera” and “just enjoy making the memories.”

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And I do that — sometimes. As I vowed to Mr. B in that day we officially joined our lives together in 2012, there are some things I save just for us. But, there’s lots of other stuff I share, quite often.

There are a lot of reasons I take — and share — as many photos as I do.

  • I’m super close to my family — just not geographically. It hurts my heart to know they’re missing out on so much of my kids’ lives (and that my kids are missing out on experiencing the true, crazy joy that makes up their Up North family), so I share lots of photos in hopes that it makes up for a tiny bit of the distance.
    whole family
  • I know, all too well, that there’s going to be a day in your life that you only have pictures left. As I was updating our family photo wall the other day, it struck me — directly in the tear-makers — that I’m regularly going to be changing out our family photos and updating pictures of Little Miss and Mister Mister, but I’ll never have new photos to post of Penelope Joy. All I have of her are the pictures I took in the (way too short) time period of 38 days. And, I’ll tell you what, I should have taken more.

    Family Photo

    Our final family photo with Penelope Joy.

  • I think, perhaps one of the most frustrating things I’ve heard (and read) is that “you should put down the camera and just enjoy making memories.” Here’s the thing — memories aren’t forever. And they certainly aren’t guaranteed. My dad died at 63, having no idea who most of us were. Literally, all he had were pictures — and all we have, now, are pictures. My kids won’t know their Papa except through the stories I share and the photos I show them. Younger onset Alzheimer’s disease stole my dad’s memories — and so much more — from him, and from us. But, I’ll be damned if it’s going to take my pictures.On my wedding day with dad
    So, next time you’re looking at my feed or my page and you think to yourself, “geez, she takes a lot of pictures,” maybe your second thought will be “isn’t it great that she’ll always have those photos to help her treasure those moments.” If that’s not your second thought, I invite you to close that tab and look away — you don’t have to look at them. And you also don’t have to worry if I’m living enough in the moment. Trust me I am. I’m savoring every single, beautiful second.
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Running for the Heart of It

Next weekend I’m going to run my first race since Dottie Lou was born. Well, my first race since I found out I was pregnant with her. If I were being honest, I’d also tell you that it’s also the first real run since finding out I was pregnant.

Actually, this time last year is when I ran for the last time — this very same race: the Fifth Third River Bank Run 5k. And it was just a couple weeks before that faint pink line appeared.

ALZ StarsLast year I ran to raise awareness for Alzheimer’s Disease in honor of my dad who, at that time, was just beginning to slip into the stage of the disease that would take his life.

You see, running makes me feel good about myself physically and mentally. Running for a cause that’s as near and dear to my heart? Well, that’s just good for my soul.

This year I am — once again — running for a cause that’s important to me: Mended Little Hearts of West Michigan. This year, I’m running for Penelope Joy. And I’m running for the 1 in 110 babies born with a congenital heart defect (CHD).

Penelope Joy Scar

Penelope Joy

If you’ve been following my blog for very long, you know that Penelope Joy is our oldest daughter who was born in 2013 with a number of serious birth defects — among them, several heart defects, including a hypoplastic left ventricle. She had her first open heart surgery when she was four days old. And she lived for a mere 38 days.

We had learned about her special heart at a 20(ish)-week ultrasound when we were given the news that would forever change our story. I won’t talk too much about that part of our journey — because those stories have been told before. What I do want to talk about is how important Mended Little Hearts became to me as I faced something no mother should ever have to face: the death of her child. At the time, her only child — the one who made her a mother in the first place.

mlh logoMended Little Hearts is a national group with regional chapters made up of people — in West Michigan’s case, mostly women — who offer support, encouragement and education to families as they face the realities of CHDs. I first learned about them through a pamphlet I picked up at the heart surgeon’s office during one of our prenatal visits. (Gosh — who ever thinks they’ll have to visit a heart surgeon for a prenatal visit?!)

After I reached out to them, it was like some sort of balloon popped — one of those really cool, fancy balloons filled with all sorts of beautiful confetti. Except this balloon? It was full of amazing women with beautiful souls who reached out to Mr. B and me in our most desperate time of need. We were immediately surrounded by love and support and prayers. In addition to information and messages of love on social media, the women brought us food to the hospital — and they ate with us. They didn’t try to make us feel better — because when your child is dying, there is no “better.” But, by being there for us — and somewhat understanding, or at least appreciating, what we were going through — they helped us immensely.

Since Penelope Joy died, they have served as a support group for me in a way. While it can be difficult to attend some Mended Little Hearts events — because “why couldn’t my Penelope been one of those kiddos running around, beating all odds” — it’s so special to be part of a group where I get to be surrounded by all those little superheroes who are stronger than their years. And don’t even get me started on their parents and other family members who’ve been through … well … you know … and back.

The group offers so much more than support and yummy food — though, to a person staring down the line at a hospital cafeteria, that might be the most important thing! Mended Little Hearts also provides a number of helpful resources and services by:

  • Providing peer-to-peer support to parents and caregivers of children with congenital heart defects
  • Providing peer-to-peer support for children and adults with congenital heart defects
  • Offering educational and health resources related to congenital heart defects
  • Raising awareness in the community about congenital heart disease to help others understand the disease and increase research funding
  • Providing support to expecting families through our Prenatal Information Pack distribution program
  • Providing support to families through our care bag distribution program at Helen DeVos Children’s Hospital
  • Advocating on issues that help improve the lives of those living with congenital heart defects

By choosing to use my (very slow) miles to raise money and awareness for Mended Little Hearts, I hope I can make even a tiny sliver of the difference for someone that this organization made in my life.

If you’re interested in learning more about Mended Little Hearts and the services and support the organization provides, please visit the website. And, if you’d like to support me and MLH-WM as I run my first race since Dottie Lou was born, you can make a donation here — please don’t forget to select my name (Kimi) from the dropdown menu. (Special shout out to all of those who have already supported me in this run — financially and spiritually!)

And, if you’re so moved, please say a little prayer of strength — physical and emotional — as I make my way toward the finish line on May 9.

Our final family photo with Penelope Joy.

Our final family photo with Penelope Joy.

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Spreading Awareness About CHDs

Fox 17 recently invited me to share Penelope’s story — my story. In case you missed it, I’d like to share it with you as well. 

View video.

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Not all Survivors Have Scars

There’s this graphic making its way around social media. It says something along the lines of: There’s a word for kids who lose a parent and a word for people who lose their spouse, but there’s no word for a parent who loses a child.

While I suppose it’s true, it’s also not. Because I think there is a word.

Survivor

Because that’s what I am — that’s what we are.

We survived when the doctor told us “I have bad news.”

We survived when our baby was taken from my arms and rushed to the NICU, Mr. B quickly trailing behind.

We survived as the doctors told us over and over “we found something else.”

We survived as we distraughtly waited in the surgical waiting room — three different times — for word that Penelope would live to fight another fight.

We survived sleepless nights and middle-of-the-night dashes to Penelope’s room when one more thing went wrong.

We survived the looks of sadness on the doctors’ and nurses’ faces as they said there was really nothing more they could do.

We survived the night we held our baby in our arms as she took her last breaths.

We survived the funeral home and the looks of pity and the never-ending “what can we dos.”

We survived spreading Penelope’s ashes.

We survived when the phone stopped ringing and the letters stopped coming and everything became quiet.

We survive walking in the apartment at night and hearing the neighbor’s baby crying as we look at each other, knowing that could have been us.

We survive the still-awkward conversations and uncomfortable silences because people still don’t know what to say to us.

And every day we survive knowing that so many people have what we desperately wanted. What we desperately want.

Some days, surviving is easy. But some days, surviving is hard — and we do it only because we have each other to lean on. But we survive.

Because there is no other option.

During Congenital Heart Defect Awareness Week (Feb. 7-14), CHD survivors are encouraged to “rock their scars” and put a face to this leading cause of infant mortality.

But, as I’ve learned, not all survivors have scars. Mr. B and I don’t have physical scars. But our emotional scars? We will carry them with us forever.

And the landscape of our hearts, too, is forever changed.

We fought the good fight right alongside our Penelope. And while she won many, many battles, she lost the war. And we lost it too, the second we kissed her forehead and told her goodbye.

So, this short piece? It’s me rocking my scar — as a CHD survivor.

My family

My family, the day before Penelope Joy died.

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