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.

Loving Thoughts for Caregivers

Aug 14

Posted by: ACHA
8/14/2013 2:08 PM  RssIcon

By Yvonne Hall

Never once during decades of caregiving did I ever consider I might lose myself in the process.

I was just 20 when I became a mom for the second time but this time was different. My baby daughter was diagnosed with a heart condition called tricuspid atresia and my world was about to change. Hindsight shows me that my entire adult life has been overshadowed by her condition and unknowingly somewhere along the way, I lost “me.”

This shocked me because I had a busy life filled with my own drama and her care was simply another element of mothering. Failed relationships, divorce, and working full time as a single mother to two young daughters were just some of the challenges I faced. My life was busy and I juggled my responsibilities like any busy mom or dad would do.

I’m sharing this insight in the hopes that it will prevent others from forgetting themselves in the process of caring for a loved one. I thought I handled things beautifully and never gave much thought to stress and anxiety. It was just a normal part of raising kids and living with a CHD child.

Although we faced many surgeries and tests over the years, against all odds, Lorie continued to thrive. I didn’t realize that I was living in a limbo of existence, subconsciously waiting for the “other shoe to fall.” It all came to fruition about four years ago when she collapsed with an embolism and my worst fears were realized. Miraculously she survived, but life had changed drastically and her heart was failing.

My immediate response to anyone was always a smile and “I’m fine, I’m doing great.” In reality, going through crisis after crisis never knowing which day I might lose my daughter should have indicated I couldn’t possibly be OK. Yet, I never considered counseling or getting any kind of help for me. I was in denial concerning her and myself.

And then we experienced our miracle. Lorie underwent a successful heart transplant and her recovery has been amazing. And that is when my crisis began. Unfortunately, it took a serious injury to get my attention and force me to be quiet, be still and heal. Since my fall, I have experienced anxiety attacks and a fear like I’ve never known. It was in the letdown I encountered the truth that I hadn’t really been OK at all and that we caregivers have a tougher time receiving than giving. My need for a few months of allowing others to care for me has been a huge and humbling lesson and I began to embrace the blessings hidden in my pain and lengthy healing and to discover some well-hidden truths.

My identity of 49 years is gone. My caregiving duties are barely needed now; I’m no longer living on standby. Joy had also left a huge hole in my life. As the post-transplant months passed and Lorie continued to thrive, the let down period, both physically and emotionally, began for me—and I crashed. While I was ecstatic with Lorie’s outcome, it’s difficult to comprehend how I could feel such severe anxiety in my body. Our prayers of many years had been answered with an even better outcome than we dared to imagine.

Slowly, through journaling, meditation and prayer, the light bulb in my mind came on. I didn’t know who I was anymore; I had given up my identity decades ago when I was too young to even have an awareness of identity. It’s ironic that during her 49 years with her original heart, Lorie never allowed her condition to define her—but somewhere along the line I had allowed it to define me.

I am labeling my experience as a form of post-traumatic stress and it is an insidious, hidden emotion. Now it’s time for me to heal myself and move on. I sincerely hope my story will be of benefit to others to create an awareness and honesty about how they really feel and not deny it until it’s too late. And if you’re feeling lost, possibly what you have lost is “you.”

Yvonne Hall is a wife, mother, grandmother and life coach in training. She blogs and journals regularly as well as holds the position of personal assistant to her daughter, Angel Thinking author and CHD advocate Lorelei Hill. Yvonne’s intent in coaching is to encourage those in their transition years to embrace their age and value their wisdom while seeing aging as a new chapter rather than the last chapter. Yvonne has a lot to offer families struggling to raise children with CHD as well as women looking to grow wise gracefully.

Copyright ©2013 ACHA

Tags: Yvonne Hall
Location: Blogs Parent Separator ACHA Blog

5 comment(s) so far...


Re: Loving Thoughts for Caregivers

I'm sure this article will be so helpful to not only caregivers, but some of us patients who may have lost our identities to our conditions. Thank you for sharing.

By Marcia on   8/14/2013 3:15 PM

Re: Loving Thoughts for Caregivers


Your post brought me to tears. There are many similarities in our stories and I understand completely what you are going through. My daughter was born with multiple defects, had 2 open heart surgeries and had a feeding tube for 3 years. She has been doing very well and is now 18 but just as I feel like I can start to figure out who I am, her condition is beginning to worsen. I, too, am really trying to learn not to put everyone else first. I have lived the last couple of years with anxiety, etc. and was diagnosed with celiac and hypothyroidism, undoubtedly due to
not focusing on me!

Glad to hear your daughter is doing well. Thanks for sharing.

By Mary Carolan on   8/14/2013 3:18 PM

Re: Loving Thoughts for Caregivers

Thank you so much for sharing your amazing story. My Daughter turned 30 this year and I also was 20 when I had her. Living in fear and the other shoe too drop I can so relate too. Growing up with her and trying to raise her brought so many challenges. But I always say and mean it She is my greatest accomplishment. She is doing well today after TGA and VSD repair with the normal complications here and there. Glad you are healing and thank you again for sharing. It is so nice to know we are not alone. God Bless

By Joan Mommy of a CHD Warrier on   8/14/2013 4:22 PM

Re: Loving Thoughts for Caregivers

Wow, this is beautiful. Thank you for writing about this side of CHD. It's important. <3

By Kaitlin on   8/15/2013 8:43 AM

Re: Loving Thoughts for Caregivers


Our 3yr old has Tricuspid Atresia, along with a few other CHDs. Waiting for that shoe to drop has become apart of us, it seems, especially now that we're within a year of either a 3rd open heart surgery or transplant. Reading your story has renewed my hope for her, and brought to light something that I've been feeling for a while now husband and I are not taking very good care of ourselves. As we are "older" parents (I'm 43, he's 37), the stress is showing in so many ways (gray hairs, weight gain, wrinkles, etc.), yet we sweep it under the rug, as something to deal with after we get our Kat through the next heart hurdle. From one heart mom to another, thank you for the reminder; I'm signing off the PC to get on my bike and take my girls for a ride. God bless you and your amazing girls for surviving this horrendous journey. And thank you again for sharing your story.

By Joanita Goodson on   8/15/2013 3:00 PM

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