8/26/2013 11:50 AM
By Christy Sillman
I recently realized that home feels different. Not my actual house, but the people who make up my emotional home. I’ve always felt safest with my parents. I felt nervous traveling without them, and always wanted to live close to them. It’s taken 12 years but the “CHD torch” has been passed—my husband and son are truly home to me now.
I know that this emotional transition is part of what “growing up” is all about, but when you have CHD it’s different. My parents have been through a lot with me. They’ve been by my side every step of the heart journey. Navigating and learning through the journey together has developed a stronger than average bond and a sense of security I never really had with anyone else—I guess that’s what unconditional love is all about.
I can only imagine what being a heart parent is like. Being a parent is like having your heart transplanted into another human being—your child truly is everything. Congenital heart disease is a unique journey that I imagine changes the essence of the heart parent’s being. I know it majorly changed my parents’ lives—my dad sold his plumbing business and became a very successful physician, and my mom became an experienced caretaker (a skill she’s used most of her life). As a family we’ve grown together and found solace in our shared experience—it’s a unique connection I couldn’t find in others.
Living with CHD, there always seems to be protective emotional walls put up in my relationships. It’s stupid, really, because anyone could die at any moment, but when you’re born with a life-threatening chronic condition everyone realizes your fragile existence. I’m terrified of hurting others, so I put up walls, and others are terrified of losing me, so they put up walls.
It has been really lonely at times, but then I met my husband and he came to me “wall-free.” I put up walls left and right with him, and honestly I still sometimes feel scared—I love him so much I’m terrified of hurting him through my CHD.
Guilt is something I struggle with a lot.
Like the hero he is, he’s taken me, all of me, and committed fully. He wants to learn, he wants to advocate, and he wants to be involved. He takes exceptional care of me. He’s chosen a life with CHD and has embraced it for all that it is. I imagine my parents willingly passed “the torch” to him because he was so eager and willing to accept it.
My parents are still a huge part of my life, but they have their own health conditions and aging parents to worry about. Their role has changed, and it’s a healthy transition. It’s been rough for me at times, but I can see that it’s necessary.
I know that someday my son will become the next “torch grabber.” My challenge is to raise a young man who isn’t afraid of mortal fragility, but embraces life and truly appreciates every moment we’re given. Through my husband’s positive influence and my carpe diem attitude, my son is sure to become a wonderful caretaker and make an amazing husband to some lucky person someday.
Who holds your “CHD torch” for you? Who do you rely on? Have you experienced “torch passing” and how did you cope with it?
Christy Sillman was born with tetralogy of Fallot with pulmonary atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at iPinion.us by clicking here.
Copyright ©2013 ACHA
2 comment(s) so far...
By Michael & Susan Carl on
8/26/2013 2:25 PM
Re: Passing the Torch
Beautifully written and definitely touching to us as CHD parents. Letting go and passing the torch is not easy, but as we grow older, it becomes a necessary event in all of our lives. We will always worry about you as we have since you were born, but our faith in God carries ALL of US through this life we were dealt. Steve and Noah are the best new home providers we could wish for you. Love, Mom and Dad
By Danielle on
8/27/2013 8:03 AM
Re: Passing the Torch
Great story. Growing up with a CHD is not always easy and really its the family that supports us that helps make the road a little bit easier. It is so important to have a good support network. I can relate to your story. My parents went through a lot with me too with my heart surgeries. I still live with my parents but one day also wonder if I would find someone to date who would love me for who I am, CHD and all. Stories like these bring strength to others, Thanks for sharing!