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It Takes a Village

Mar 14

Posted by: ACHA
3/14/2012 11:19 AM  RssIcon

By Christy Sillman

“I wish I never knew congenital heart disease,” posted one of my heart mom Facebook friends. I get what she is saying—that none of us chose to know CHD, but it is all we know so we’re forced to face it head on. I think about all my family members and how CHD has changed their lives and the guilt starts to sink in. It’s so silly because it’s not like we asked for CHD; it just hurts to feel like a burden.

There are heart moms, heart dads, heart grandparents, and even heart siblings who I know wish they were ignorant to a life with CHD.

But what about the heart spouses and the heart friends? These are the unsung heroes of the CHD support team. When you really think about it, they are willingly choosing to invite CHD into their life. That is something really astounding.

My husband knew early on what he was getting into. Our first date was canceled when I was rushed into emergency surgery for an appendectomy. I was shocked when I woke up from surgery to find him sitting by my side with a bouquet of flowers. I mean, REALLY? What a great first impression! My mom said, “If you want to keep dating her, get used to this picture,” as she pointed to me lying in the hospital bed. I still can’t believe he didn’t make a run for it then!

My husband has yet to endure a heart surgery with me, but he has slowly become more and more involved in my care. I can almost see the support-torch being passed from my parents’ hands to my husband’s.

I feel guilty.

Then he reminds me, “I knew what I was signing up for, and I’d happily do it again. I love you, all of you.”

I have an anxiety disorder that I feel I cope with well, but sometimes my anxiety makes me mean. I get frustrated easily and my fuse is short. I sometimes get overwhelmed and withdraw in a cloud of sadness.

I feel guilty.

Then he reminds me “I understand. I can’t even imagine how hard it is for you. Know that I am here.”

I can’t have any more children. I barely have the energy to keep up with our two-year-old son. My husband has to get a vasectomy because I can’t endure an elective surgery right now.

I feel guilty.

Then he reminds me,“You’ve had enough surgeries. I am happy to take one for the team. Just don’t ever leave me because I’ll be way less marketable now, OK?”

Leave you? Leave YOU? Are you kidding me? Why would I ever, EVER, leave?

It’s not just my husband, but my friends, too. Some of them were around when I had my last open heart surgery 14 years ago and they still hold my hand today. I’ve made more friends who cheer me on, lift me up, and completely understand when I have to say “no.” I couldn’t imagine facing CHD without their support.

Then there is my son.

He certainly didn’t choose CHD to be in his life, but I do think God chose him to be my son. I feel guilty when I can’t keep chasing him or I have to lay down when he just wants me to keep going. I feel sad when I have to walk away from him to rest. He doesn’t understand right now. Someday he will.

Then the other day he came over to me, gave me his blanket, and rested his hand on my cheek. He loves me, all of me, and I know he’ll always take care of me.

Whether CHD changed their existing life, they choose to have it in their life, or they were born into it, these are the people who we lean on. It takes a village. Although I sometimes feel guilty, I also feel extremely lucky to have so many people to love and support me.

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.

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1 comment(s) so far...


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Re: It Takes a Village

Christy,

Your blog is awesome. I have tetrology of fallot and I have had three open heart surgeries. It's so great to read about someone real that knows exactly to the T, how I feel. from feeling guilty, to anxiety, to sadness to happiness. Your blog brought tears to my eyes b/c it's nice to know I'm not alone. I mean, I know I'm not the only one going through it, but it's nice to see and hear someone elses exact feelings.

I also have children and can't have anymore. My heart can't handle the extra blood flow. I have a three year old and one year old boys. My three year old was there when I had my third open heart surgery. And to this day, he will walk up to me, put his hand on my scar and say, "Mommy, I will always take care of you. Don't worry you will be ok." And everytime he does that, which is pretty often, I just cry, because I'm so lucky to have a family and friends that are there. Especially my husband and children. Everything you said about your husband, describes my husband. We are lucky to have found them.

Thank you for sharing your story.
Jenny Godden

By Jennifer Godden on   3/14/2012 12:54 PM

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