Every Heart Has a Story Event

Today I sent my three children off to school.  Hunter the dog and I waved good bye as the school bus drove away (well, I waved, and Hunter looked downtrodden–he’s not a fan of those big yellow monsters that take his peeps away) and then we went for a run.  I took a leisurely shower, after which I let my good friend Nicole in the house.  She’d just dropped off her youngest at kindergarten, and needed some chat therapy.  (I love it when I can provide a service and do my own dishes at the same time.)  And now I’m sitting down to the computer, about to update someone else’s blog widgets and write some articles and be a productive, wage-earning member of society.

I know, my life is just one thrill after another.  But I like it that way–I’ve come to appreciate the magic of ordinary days.

Every once in a while I like to take a break from the glue guns and spray paint and the “fluff” of my life that I generally write about here, and revisit the topics that started my blog.   Last year, I wrote something to explain that, and I want to re-post part of that blog entry, today.

Here’s the thing.  Along with the blogs that I check on regularly to get ideas for my house, I have another group of blogs that I check on regularly to get or give support to other families finding their way around Holland.  Each day, I find myself viewing the inside of two very different worlds: the shiny, pretty world where children pose in bright, handmade clothes on slipcovered couches and painted chairs, with burlap banners proclaiming the joy of the season behind them, as their mothers pull another batch of their signature cookies from the oven……and the less comfortable world where the children pose with their latest feeding tube or portable heart monitor next to a stack of laundry that needs folding while their mothers try to sound brave about the surgery that is around the corner and the fact that they haven’t had a decent night’s sleep since they came back from their last hospital stay.  I take notes on things I can replicate in my own home from the shiny world, and I make lists of people to pray for and symptoms to watch for from the other world.  It is a strange dichotomy.

During those times when I struggle with the contrast of those two worlds, I have to remember that there is a time and a season for all things.  I have to trust in a loving Father in Heaven, and have faith that He has a plan for all of His children.  We are each here to learn and to grow and–especially–to experience joy.  How we discover that joy in our lives, despite our individual trials, is up to us.  We don’t all experience the same trials nor do we share similar opportunities for personal learning and growth, thank goodness!  Our experiences are going to to be as unique as we are.  The timing of our tests and our blessings and even our miracles are going to be different, too.

A time and a season.   Things can change so quickly.  I found these pictures taken on a family vacation, just before Superkid was diagnosed with her congenital heart defect.

And these, taken a few weeks after Superkid’s diagnosis, when we were at Boston Children’s Hospital, awaiting an experimental treatment that would hopefully delay open heart surgery.  (Unfortunately, it sent us to surgery earlier.)

I could not have guessed, on the day the first set of pictures was taken, what twists and turns my own personal journey was going to take.  I could not have imagined, then, what it would be like to learn to insert a feeding tube into my baby’s nose or what it would be like to select a place to bury my baby.  In the second set of pictures, I was learning to imagine those things, but I couldn’t yet envision how my life could ever be “normal” again.

Is my life normal, yet?  Not really.  Not in the way I thought it would be, when the sun was shining as I dipped my baby’s feet in the water.  But it is also different, and better, and more manageable than I imagined it would be when I cried as I tried to smile for pictures that day in the garden at Boston Children’s Hospital.

Those times and seasons are ever changing, and none of us can ever predict what new experiences will be ours with the next breeze.  For some of us, the tragedy of our day is running out of glue sticks before finishing the wreath we wanted to make, and for others the measure of a successful day is one in which our child didn’t have to be admitted to the hospital.  Let’s be kind to one another, recognize that we are all doing our best with what we’ve been given, and support one another as we go through these times and seasons at our own pace.  If an empty glue gun is currently your only concern, then pray for the mother who is wondering how much longer she’ll have a baby to hold.  And, if you are just hoping to come home from the hospital today, then know that this, too, shall pass; there will be time to make other memories and maybe even a wreath or two.

Superkid, age 7, CHD survivor living with mitochondrial disease and doing great.
Today I put Superkid on the bus, bound for second grade and new adventures.  I feel incredibly blessed to see her growing and thriving, despite an artificial heart valve and mitochondrial disease.
Today I did not take my youngest child to her first day of preschool.  Which is what I would have been doing if Lily had been born with a perfect set of chromosomes, an entire heart, and a less severe form of mitochondrial disease.
It would be easy to wallow in self-pity over the tragedy of what I am missing out on today, to shake my fist at the seeming unfairness of the story I never planned to write.  Instead, I’ve made a conscious decision to look back with gratitude over the pages of our story.  I have the knowledge that death will not divide our family.  I have witnessed miracles, even when all hope of miracles was lost.  I have children who show compassion and maturity beyond their years.  I have a second grader who is alive and well–so well, really, because of the little sister who was willing to come to earth in an imperfect body and stay long enough for her doctors to discover a diagnosis that would benefit Superkid.
It’s a much better story than the one I would have written myself.
May I invite you to rise to the great potential within you. But don’t reach beyond your capacity. Don’t set goals beyond your capacity to achieve. Don’t feel guilty or dwell on thoughts of failure. Don’t compare yourself with others. Do the best you can, and the Lord will provide the rest. Have faith and confidence in Him, and you will see miracles happen in your life and the lives of your loved ones. The virtue of your own life will be a light to those who sit in darkness….Wherever you have been planted on this beautiful but often troubled earth of ours, you can be the one to “succor the weak, lift up the hands which hang down, and strengthen the feeble knees.”
-Dieter F. Uchtdorf

I’m participating today in a special blogging event for families affected by Congenital Heart Defects.  It’s the second annual Every Heart Has a Story Event, sponsored by my friend Stefenie of When Life Hands You a Broken Heart.  If you would like to know more about CHDs and the families that have been affected by the #1 Defect (1/100 children is born with a heart defect), then I encourage you to join me there. 

Comments

  1. Thanks for joining in my blog linking event dear friend!! I enjoyed reading yoru post today!

  2. Wow…I loved reading your story! I can’t wait to read more. I’ll definitely be keeping up from here on out. I’m one that’s always anticipating that next hospital stay but love to paint a wall or hot glue something in the mean time! 😉 We just may have some things in common!

  3. So very nice to meet you, Ruth. : )

  4. So glad I stumbled upon your little piece of Holland! I will definitely be reading more.

  5. You have spoken what I need to hear on so many days. My baby (well, more of a toddler now, but the youngest of my 4!) also has the myriad issues that come with “mitochondrial disease”. I also struggle with finding that balance of wanting to lash out at moms whose biggest whine is “not having ANY time to go to the gym!!!!” when I spend most days getting a workout lifting a brand new wheelchair into the back of my car, or lugging around pumps and equipment for my child. We are all on our own journey. Such great reminders.
    Thank you for sharing this heartfelt moment of your journey with us.

    terra

  6. So glad I found your blog – my 3 week old had open heart surgery at 5 days old . . . its a blessing and encouragement to learn about other moms on this journey

    • I’m so glad you stopped by, Becca! I’m headed right over to read more about your sweet baby. It really is wonderful to know that there are other moms who can relate to the incredibly difficult (but rewarding) job of parenting a heart baby.

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Trackbacks

  1. […] of you know, I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily.  I’m also an avid Pinterest pinner–I love collecting ideas and inspiration […]

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