Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD


The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

Always in My Heart

Oct 11

Posted by: ACHA
10/11/2013 12:25 PM  RssIcon

By Lorelei Hill

“Did I ever tell you about the night Grandpa King died?”

Nearly three years before my transplant, our family began the difficult, yet inevitable conversation of my potential death. Kate was six years old, Riley just seven. Having watched me grow tired and often collapse, and after many emergency room visits, the children knew that I was getting weaker. Being congenital heart patients themselves, they understood the constant inclusion of hospitals and doctors in our lives. But how much they grasped about the gravity of my condition remained an unknown.

I am writing this blog in response to Alissa’s post, “Your Kids and Your CHD: Do They Understand?” My immediate response is this: If they understand they are forever loved, the rest falls into place. While my approach to talking to kids about cardiac disease may not feel right for everyone, it was the only way my children could emotionally prepare for what might come.

“The night Grandpa died, I dreamt that I was sitting on the floor in the middle of his living room, crying. It seemed so real when I looked down at his hand in mine. He was grasping his chest, and through my tears, I begged him not to leave me. Lifting his hand, he held my cheek and whispered, ‘I will always be in your heart.’”

At the time, this was all of the story Mike and I felt we needed tell. Those closest to me have always known about my sensitivities. Our family believes in the connection between our world and the world of spirit and regularly feels the presence of loving souls in our home. The kids have even helped us bury beloved pets—including one very large aquarium fish named Homer—in our little garden pet cemetery.

As my condition deteriorated and I became increasingly exhausted, the kids naturally turned to their father for physical play and to assist with laborious tasks. Being their mother they turned to me for most everything else. When sick or frightened in the night, they’d ask me to sleep with them. When they arrived home from school, I greeted them and most nights helped them with their homework. When they were cranky or fighting amongst themselves, it was to me they’d turn. Soon enough the conversation of my failing heart returned as a frequent topic of conversation.

When a month before Christmas a short scheduled hospital visit turned into a month-long ordeal, my husband and I entered into the discussion of this possibly being my last Christmas with them. On Christmas Eve, in a hotel room a block away from the hospital, my son and I shared a bowl of soup while Mike and Kate ran out to get a pizza. The soup was all I could eat, and Riley, now nine years old, knew it. In the quiet of the hotel room, Riley and I hugged, giggled, and savored—not just the soup but also each other.

The impending death of a loving parent is the most frightening event a child could begin to endure. This was no exception for mine, and so, every day, in every way, I told my children I loved them. I disciplined them when necessary, which was and still is a lot, but through it all, we reminded each other of the blessings of love we shared.

“You know, I’ll always be with you,” I’d tell each of them separately before they went to sleep. Never treating them like adults, Mike and I calmly spoke to them openly and honestly. This honesty came back in a flood of happy tears when two weeks prior to my transplant, as I tucked Kate into her bed and whispered those words, she grabbed my face and said, “I know Mommy, even if I can’t see you, you will always live in my heart.” What more could they need to know?

Hello from Ontario, Canada! Lorelei Hill is a mother of two CHD babies, wife, writer/teacher, and a survivor of tricuspid atresia. After graduating with honors from Queen’s University in Kingston, Lorelei went on to teach and travel the world. Now settled into small town life, she is working with other CHD patients and her own cardiac specialists to complete a self-help book for young CHD families, entitled From the HeartClick here to visit her website.

Copyright ©2013 ACHA

Tags: Lorelei Hill
Location: Blogs Parent Separator ACHA Blog

Your name:
Gravatar Preview
Your email:
(Optional) Email used only to show Gravatar.
Your website:
Security Code
Enter the code shown above in the box below
Add Comment   Cancel