Seven Years Later

Y’all. It’s heart month. The time when all the good heart mamas are posting pictures and educating like the amazing chd advocates they are.

Me? I’m watching a baby sort through the office trash.

But I know that looking back is good. Remembering God’s faithfulness is good. And reminding all the moms-to-be to get a simple test that could save their baby’s life is good.

February 20, 2008, was the day that our world was turned upside down. The day a simple anatomy scan for our baby turned into a journey we were not expecting.

Today, I’m trying to teach that baby girl how to read. She’s as stubborn as she was the day she propelled herself from my body in a blaze of glory. The HLHS didn’t kill us, but discerning the subtle differences between “b” and “d” may just finish us off.

It’s been seven years since we first found out, four years since her last surgery, and a mere 12 minutes since she knocked me out with her quick wit and sassy beauty.

Are y’all tired of me saying it yet?
Streams of mercy, never ceasing, call for songs of loudest praise. 

 

 

One Year Later

Is it just me, or is it a little confusing how Easter falls out each year? Last year Easter Sunday fell on April 24, this year it was nearly three weeks earlier. {Oh thank you, Google, for clearing that up!}

You may recall that last year our Easter was celebrated in Durham, NC. We were a scant four days past Charlotte’s last surgery, and while we did not dye eggs, Charlotte’s complexion had clearly changed from blue to pink.

It is so nuts to look at our girl now and see how far she has come in one short year. Last year, before her surgery, she could barely keep up with Sam without needing to be carried. And she was so tired all the time.

This year she has conquered hills…

She has danced…

And danced…

And danced some more.

She has fallen and gotten back up…

She turned 3 and became a preschooler…

But mostly she’s just been our Charlotte.

And she did get to dye eggs this year!

{And yes, it would seem as though our girl has had quite the assortment of hair styles this year. She is my daughter!}

He is able to do immeasurably more than we can ask or imagine.  And that is a fact!

 

 

Wearing Red for Our Babies

I’ve asked this before, but does your child have a congenital heart defect? How do you know for sure? Some babies show signs of distress right away, some look fine until they have been home for a few days, and some drop dead on a football field having lived with an undetected CHD for over a decade.

I’ll ask again: does your child have a heart defect?

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Walking a Mile in Her Shoes

We were invited to join friends on a spontaneous outing today to enjoy unseasonably warm weather. Our first stop was at a little park owned by an old country church that claims a giant slide that is akin to a bowling lane. Sam and Tim had a ball sliding down the slide, and after about an hour of protest Charlotte gave it a whirl, too.
  

But the real story of today was the hike we took at Cunningham Falls. Both families set out for a mile hike up part of a mountain and then back down. I expected that Tim and I would take turns carrying Charlotte, since she can tend to tire out and she asks to be carried a lot when we are out and about. But aside from a couple of minutes on Tim’s back, she walked the whole way! Certainly her determination was helped by wanting to keep up with Sam and the three girls we were with. But still. Tim and I kept looking at her, and I know he was thinking the same thing I was; that our little BG was doing great! Charlotte, with her wonky heart, whose life is being sustained, in part, by a tiny piece of Gore-Tex, hiked herself a little mile today.

Last  night we sang Come Thou Fount at our small group meeting, and I think a line from that sums up our journey with Charlotte so well:
Streams of mercy, never ceasing, call for songs of loudest praise.

Dear HLHS,

I am sorry to tell you that with every passing day it becomes more and more clear that we won.

You gave it your best shot, but you failed.

Miserably.

And my girl is gonna add insult to injury in two weeks when she puts on her new shoes.

Sucker.

Sincerely,
Charlotte’s Mama

Ninety Six…

…is the name of a little town in South Carolina.

…is the year I graduated high school.

…is the number that came up when the nurse checked Charlotte’s O2 saturations on Thursday.

96! That is the highest her numbers have ever been. Ever.

This baby

is now this big girl,

who really could have done the whole appointment without me even there.

She answered all of the nurse’s questions and all of Dr. M’s questions all by herself. When Dr. M asked if he could listen to her heart, she walked right over to him and lifted her shirt so he could listen. And she was just as still as she could be during her echo.

The echo was great, and everything in and around her heart looks just as it should. He took her off her blood pressure meds, so all she has now is a Flintstone’s and a baby aspirin each morning. We go back in six months, and I am sure she will wow them again.

Right before we left, Charlotte asked Dr. M if she could have a picture of her heart. He happily obliged, dashing off to the echo room to print her out a picture. I finally had to pry it away from her to keep it in tact! She is so proud. We are too, and even if I can’t tell you exactly what’s what in the picture, I can tell you that it is a highly functioning “defective” heart.

Thank you Lord, for sustaining Charlotte, and for reminding us that miracles may not always come in the form of complete healing, but they do come.

The Heart Walk

Yesterday the four MD Touseys joined in our first walk to raise money for congenital heart defects.

The money goes to support research which is still very lacking in some ways in terms of diagnosing and treating CHDs. CHDs kill more babies and children every year than all childhood cancers combined, but there is still such a lack of funding for CHDs. There is no St. Jude’s for CHDs.

I was reminded of the importance of funding and research yesterday as two moms stood at the microphone and shared how their babies had died at 12 days old and 28 days old, respectively, both from HLHS.

I admired their strength so much. I wondered if I would want to be anywhere near a heart walk, around all the other parents who got to keep their children. I hope I would be like them, working through my grief to make sure no other mama had to pick up a button like this at a heart walk.

I am so thankful that we only had to pick up an “I am a CHD survivor” button for our little warrior princess.

She wears it well.

Thank you all so much for giving. You don’t know how much it means to me that you would give your money to help fund research for CHDs. Tim and I are just overwhelmed at the giving.

We ended up with $2,009 for Team Charlotte, and I was the second-highest overall individual fundraiser. That was no credit to me; it was all because of you.  All total, the DC Heart Walk raised close to $67,000 for research! Y’all, that is amazing.

A fun part of the day was meeting some other heart moms that I had only “met” online before. We were supposed to be walking with my friend Bethany and her family, but her baby boy was sick. We did get to meet up with her girls and her mom, and I always love it when our kids get together.

I will never be able to thank you enough. We are beyond blessed by your generosity and love.
 

 

 

 

A Really Good Story

Do you guys remember when Charlotte was in the hospital the very first time and I posted about a song I heard? It was Whatever You’re Doing by Sanctus Real.

Fast-forward about two years and Mama let me know that a lead singer for a Christian band announced that his son has HLHS. It was Matt Hammitt from Sanctus Real.

His son is Bowen. While Bowen was in the hospital the first time he was roommates with a baby girl named Paislyn.

As I was commenting on Bowen’s blog I noticed that a lady named Jean was posting about Paislyn; her niece is Paislyn’s mama. (Are you still with me?)

At the time I did not know it, but Jean’s last name is Metcalf.

Fast-forward to Christmastime, and I posted a comment on Beth Moore’s blog that for some reason included the fact that I had lived in Raleigh. Little did I know, but Jean was posting a comment around the same time and saw my comment. She remembered me from Bowen’s blog, and so she emailed me to see if I lived in Raleigh.

As it turns out, Jean lives near the Raleigh area and we have several friends in common. We emailed back and forth, and Jean quickly became a friend. And yesterday we finally met in person!

She and her sweet daughter came to visit and meet Charlotte. They brought Sam and C a few little gifts and they also came bearing a box of fresh Krispy Kreme (I think we really are related!).

People keep asking if we are related, and I’m sure we could find that we are if we traced it back far enough (although she and her husband are from the north, and I am sure my Metcalf people would die before they would accept that any of our people ever set foot above the Mason-Dixon). But I know we are sisters whose hearts have been knit together by God and brought together by three sweet heart babies.

One of my favorite things about this journey with Charlotte is all the people we have met who I know we would not have met otherwise.

Thank you Jean and M for coming to visit yesterday. I am so happy we finally got to meet in real life!