Yesterday, as I unbuckled Mary Clare from her car seat, I brushed her blonde hair aside to straighten the shoulder straps.   As she leaned to help me, I noticed them.  She was positioned just right and the sun hit her face and neck so that I could see the tiny marks on her neck, invisible to most.  Only I would notice.  Only I would know what they are.

Her tiny body has been through so much and thankfully she doesn’t remember most of it.  What is left behind are the scars of her fight.

The tiny scars on her neck are from central IV lines.  She has various marks and scars all over her body from years of hospital admittances and three open-heart surgeries.  Her claim to fame and tell-tale “zipper” are quite obvious and she has no qualms about her little half-heart.  She will tell just about anyone who will listen that she does, in fact, have a broken heart.  She’s quite proud.

Everyday life gets in the way, and I often forget about my little girl’s fragile heart.  I watch her play soccer and take gymnastics.  I fuss with her about leaving her Barbie clothes all over the place.  She rolls her eyes at me, trying to be like her big sister, and she has tantrums.  She sneaks into our bed at night after McCanless has fallen asleep.  She never leaves her braids or ponytails in her hair and would eat candy for breakfast, lunch and dinner if I allowed it.

Five and half years ago, I dreamed of this.

I could only pray for one milestone for her.  Birth. I asked God to please allow me to see her face once.

It seemed too much to ask for her survival, for her to even thrive.  I prayed over and over, “Your Will be done.  Your Will be done.”

It is what got me through every moment.  Every day.

Tonight, I sent an email to a new “heart mom.”  A friend of a friend, and Hartsville family, too.  I was thrown back into all of those emotions and memories of what seems like forever ago.  She will have her first child in January, a baby boy with HLHS.

It is a journey that will take every ounce of courage and strength you have, but it will also teach you more about God and life than you can ever imagine.   Thank you, Jennifer, for allowing me to share Mary Clare with you and for another little reminder to thank God for everything that she has given us.


Jenny  on October 2nd, 2012

I have these moments too Kerri. Aly also has hardly any memories of where those scars came from (which I am so thankful for in and of itself) but knows what they represent- her broken heart. We are so blessed that our special hearts are so “healthy” and get to live their lives very similar to any other child their age. Whenever I reach out to a new family, my heart aches for them. I want to be sure to offer all the hope that there is, but I know the difficult road they must endure first. Sending thoughts and prayers to the new heart family. And, of course, feel free to refer them to for more hope. 🙂

katie allred  on October 4th, 2012

Love this friend. What a blessing this new heart mom will have in you!

Nonnie  on October 8th, 2012

I spoke with Jennifer…again the memories seemed so new. I told her of the heartbreak of finding our what our Mary Clare had to go through and seeing it is far beyond comprehension. But Mary Clare is proof by the Grace of God and the talents of these great doctors can do. Jennifer was so happy to just TALK to someone that has been through this…and again, I’m just Nonnie, but I do know what her family is feeling for her and her baby. Jennifer said it was reassuring to know Mary Clare and her family, although it was from this wonderful “Blog”. I pray for this family and I know her son will be just fine.
I look at Mary Clare, and you, Kerri and I know I have been blessed-God has been great to us.
I am so happy that you, Mel, McCanless and Mary Clare will be a great inspiration for this family.
I love you,Mom

Erin  on October 29th, 2012

I always come to your blogrowen I’m in need of some hope. My 3 yr old girlie has had her Fontan delayed twice since summer, but now it’s on for next week. When I am afraid of the bigness and scariness of life with hlhs for her, I just need reminding that with hlhs, life can also be happy, laughing, normalcy. Your daughter gives me so much courage to face whatever comes next for my own girl. Thank you for sharing her story!

Erin  on October 29th, 2012

Hmmm… Autocorrect strikes again.