4/4/2013 11:19 AM
By Yvonne Hall
Raising a child with CHD can present more than its share of crisis, but I have learned over the years with my daughter Lorie that such times are part of a greater plan. Many setbacks over the years rendered her survival tenuous but were actually stepping stones to unimaginable positive outcomes. I have named these invisible connections my silver thread and learned to be hopeful despite present realities.
My scariest moment in Lorie’s journey occurred four years ago when she suffered an embolism. Most people, even without her fragile condition, don’t recover and for the first time I had to consider the unthinkable possibility she wouldn’t survive.
Although she rallied, her cardiac team advised her to go home and get her life in order. We couldn’t even imagine that this devastating diagnosis would be the path to heart transplant and a new life, especially since we were also assured she wasn’t eligible for transplant. Nevertheless, her dedicated cardiologist and his team weren’t satisfied with this diagnosis and eventually succeeded in getting her accepted on the list after all.
Sixteen months later, Lorie was admitted to the hospital after “iffy” blood test results. She entered a healthy woman planning to return home in a couple of days, but a series of events and difficult tests left her weaker and weaker.
Twice she was rushed into intensive care. Lorie shocked her attending doctor by surviving the night of her last stay in ICU, and was tickled to see him turn white as a ghost when he entered her room the next morning. Lorie’s key to recovery has always been to find the humor in hospital situations. Five weeks later, on Christmas Eve, she was released on an overnight pass allowing her to celebrate Christmas with her family in a nearby hotel, very weak and dangerously ill.
During this horrendous experience, two significant things occurred. Lorie met another Fontan patient whose condition and age were similar to hers. They bonded quickly and became good friends. Marilyn received her call for a new heart one month before Lorie. Now in constant conversation, Marilyn paved Lorie’s way to transplant by sharing every step of her own journey. Sadly, Marilyn passed, and in doing so, led the team to a new awareness of Fontan transplant, ultimately benefitting Lorie’s recovery.
With her condition declining, Lorie’s cardiac team insisted she move closer to the hospital. Living on the shores of Lake Huron, extreme winter conditions and closed roads made quick transport to Toronto often impossible. Furthermore, Lorie was unable to be outside in the wind and cold as winter left her weaker and frailer.
Fortunately, I was able to move with her and within two weeks we were living within walking distance of the hospital. Location is everything! Our condo was across the street from the underground walkway/mall that extends for blocks. Not only were we near Toronto General Hospital, but Lorie was also able to get out every day for long walks. The fact that this pathway led us through the Eaton Centre, Ontario’s premier mall, was just an added bonus!
Lorie became stronger and healthier throughout the winter and the anxiety of not reaching the hospital in an emergency was eliminated. And so it was that on the evening of March 9, 2012, when we received the call that there was a heart for Lorie, we were at the hospital in moments.
The silver thread began with the embolism that led to the acceptance on the transplant list. Her horrific situation in the hospital led to meeting Marilyn, our moving to Toronto and a stress-free winter where she remained healthy, strong, and available for transplant. It isn’t easy to trust life during traumatic times, but my silver thread analogy has taught me that even when circumstances seem hopeless, miracles are just around the corner. Life has its own way of delivering exactly what we need.
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
2 comment(s) so far...
By Connie on
4/5/2013 7:53 AM
Re: My Silver Thread
Thanks for that thrilling (and chilling) story! I'm so happy for you and Lorie.
When I was age 11 and in the hospital for one of my first cath's, there was a young girl in there who also had a very bad heart.
Once, after my parents and I had been home for a while after one of the cath's, we received a call that little Connie had died. I was very sad.
I'm so happy to be alive now, with an lvad, and my mission for the rest of my life is to help parents of kids who have heart problems, and also to encourage other lvad patients.
Wishing all of you the very best,
By Maria on
4/5/2013 7:54 AM
Re: My Silver Thread
May God bless your daughter and give you lots of strength to provide her the support and love she needs. I am an adult with congenital heart disease - Tetralogy of Fallot. Just last summer I had my pulmonary valve replaced. I had the support and love from my 75 year old mom. She took care of me as I recuperated from open heart surgery. I love her for being so strong, encouraging and loving. I am sure your daughter appreciates and respects you for doing and will never forget it.
I salute you and my mom and all the parents who have been there and continue to be there.
May god continue to bless you and your daughter.