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A Mother’s Perspective

Feb 20

Posted by: ACHA
2/20/2013 2:22 PM  RssIcon

By Yvonne Hall

How do I recap 50 years in a few words?

Raising a child with CHD alters your life forever and takes you places you never dreamed you would go. Lorelei Hill, fellow blogger and recent heart transplant recipient, is my daughter. Now, being able to share her experiences to benefit others is Lorie’s dream come true and witnessing this phenomenon is mine.

Born in 1963 with tricuspid atresia, her future was clouded with doubt, but rapidly developing research allowed us hope. At 20 years old I was suddenly thrust into a frightening and alien world of cardiac medicine.

Possibly it was youthful naivety, but I managed to encourage Lorie’s positive, stubborn and determined attitude—the traits that serve her best. Blessed with a talented cardiologist and cardiology team at Toronto’s Hospital for Sick Children, she was encouraged to use self-care. Her cardiologist’s words, “Lorelei, remember, you know your body best,” still echo in my ears.

Watching your child struggle to find her place with her peers is heartbreaking and since heart disease is a hidden condition, kids just don’t understand such limitations. Fortunately Lorie had a few loyal friends who were willing to defend and protect her throughout those difficult years.

Lorie never allowed her condition to define her. Wearing her battle scars proudly, Lorie made no excuses for who she was. Instead, she embraced her condition as a gift and vowed to use her experiences one day to help other children navigate life with CHD.

Against her doctors’ best judgment, Lorie graduated a five-year University program with a major in religious history and her teacher’s degree. Against my better judgment, several years later she decided to travel to New Zealand where she taught for two years. I had learned by now that my headstrong daughter would do what she chose to do so I supported her decision and accompanied her to get her settled. Sitting back and keeping your mouth shut is the most difficult part of parenting, especially when your role is also caregiver.

Lorie returned home, happily married and ready to adopt a child. During another determined fight to adopt her son, she discovered he had a baby sister and became mom to two high needs babies, born just ten months apart. As much as I love my grandchildren, I was terrified for my daughter. Soon afterward, her health began to deteriorate.

Although determined by her cardiac team that she wouldn’t be eligible for a life-saving heart transplant, Lorie was ultimately accepted on the transplant list. Almost two years later, on March 10, 2012, she became the oldest and second Fontan transplant survivor in Canada.

Exactly one year ago I watched Lorie write goodbye letters to her children and husband, preparing herself for every probability. She knew the odds were against her. That was the most painful time of all for me. It was the best of times and the worst of times. We spent that winter together in a condo near the hospital, a blessing beyond words despite the combination of hope and dread shadowing us throughout those winter months.

Our story is a miracle. Today Lorie is able to pursue her dream of writing and educating children awaiting transplant. As for me, my dream is witnessing her success.

I don’t know how I was wise enough to encourage Lorie to live as normal a life as possible but I am grateful that I did. Of course this has to be balanced with proper limits and a willingness to step in when necessary. Lorie learned her own survival tools and never saw herself as an invalid.

I always had a knowing deep in my heart me she would be OK. Even so, at times fear tried to edge it out. Nevertheless, the joys certainly outweigh the years of standing by watching Lorie’s struggles. Today, as adult women, the bond and commitment to each other that we share is our most precious gift.

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

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4 comment(s) so far...


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Re: A Mother’s Perspective

Oh my gosh........I never knew this website existed. Someone just posted it on facebook! I have a 23 year old son with congenital heart disease. He has been a patient at Sick Kids in Toronto and now Toronto General. I have always felt so alone in our struggle with CHD.
This website opens up a whole new world!
Thank you so much for your blogging and your stories.
My son Ben was born with tricuspid atresia, VSD and pulmonary stenosis. He had open heart surgery for a Fontan in 1992 when he was 2 years old. He has now had his updated Fontan conversion Feb 2012...exactly 20 years to the day from his first surgery.
I am so thankful for access to other people in this world of congenital heart.
God bless you all.
Brenda

By Brenda Lucas on   2/20/2013 4:51 PM
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Re: A Mother’s Perspective

It is always so heartwarming to hear these share stories. I am a Mother of beautiful, successful, amazing, daughter who never let heart disease..TGA Senning procedure define her. Navigating her life has never been easy but it has been so worth it. She truly is my best accomplishment. Oh how I could almost have written some of your words and I so related to them. I was only 20 years old and fed her at home from a tube no medical training and was on my own. There was no blogs or groups for parents. It could be so lonely. I survived it and She thrived. Thank you for sharing your story and God Bless.
Joan

By Joan on   2/21/2013 8:54 AM
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Re: A Mother’s Perspective

Thanks Mom for the great blog. There are so many people who need to hear your side of the story. I love you. ox

By Lorelei Hill on   2/21/2013 11:13 AM
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Re: A Mother’s Perspective

Dear Brenda and Joan, and any other CHD parent or patient,
My daughter Lorelei and I work closely with CHD and chronically ill families. If you ever need to reach out you are welcome to contact me through Lorelei's Facebook page. Just Google Lorelei A. Hill and you will find her. Please message me with your email address and I will contact you directly. With love, Yvonne

By Yvonne Hall on   2/21/2013 11:13 AM

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