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Investing in my Future

Oct 21

Posted by: ACHA
10/21/2011 9:44 AM  RssIcon

By Christy Sillman

Ever since I was a little girl I have had this idea in my mind that I wouldn’t live past 30 years old. I’m not sure exactly why, but the catchphrase of “Doctors said she wouldn’t live past three days old and she ended up living 30 years” kept entering my mind. You see, I’ve been living my life on borrowed time. Every year feels like a gift or another year of defiance, and my pure focus has been on surviving.

This isn’t the first time I was convinced I had an expiration date. When I was 13 years old, a Ouija board “told” me I would die when I was 18. When my cardiologist gave me the option to schedule my open heart surgery the summer of 1998, when I was 17, or wait until the following summer, it was a no-brainer. There was no way I’d voluntarily go under the knife during the 18th year of my life.

When I turned 19 years old I felt as though I dodged a bullet, but instead of focusing on my future I just reassigned my expiration date for 2010. I partied and abused my body like I only had 11 more years to live. Then in the month of my 30th birthday I was diagnosed with postpartum dilated cardiomyopathy, a sure sign that my death prediction was correct.

Last month I turned 31.

It was like a huge weight was lifted off my shoulders. It also confirmed to me that I’m quite a silly person. The fact is–we’re all going to die. No one can predict when it will happen. No one can even predict how it will happen. I’ve realized on this birthday that I have been living my life all wrong–instead of enjoying the moment, preserving my health for the future and investing in a full lifetime of experiences, I’ve been living “pay-year to pay-year.”

Birthdays have always felt strange–like my luck in living must be getting close to running out.

I'm stopping this survivor mentality today. Yes, it’s a miracle I’m alive, but I AM ALIVE.

I’ll stop feeling superstitious every birthday and start recognizing that I’ve earned another year.

I’m tired of feeling like I have a lease on life–everyone is lucky to be alive. Anyone could get hit by a car tomorrow. Our congenital heart disease flaunts our mortality in our face and although it stings, at least we acknowledge the preciousness of life.

From now on I’m committed to enjoying my life. I’m also committed to taking the necessary steps to ensure I have many more birthdays. I want to live now more than ever because I have a husband and a son for whom I’m living. Taking care of myself is becoming a top priority.

No matter what happens today or 50 years from now I can't change the fact that I will die someday. I can only hold my son a little closer, leave him love notes to always have, and fall into my husband's arms until my heart is so full of their love that I stop trying to predict the inevitable and start enjoying the present.

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 by clicking here.

Location: Blogs Parent Separator ACHA Blog

7 comment(s) so far...


Re: Investing in my Future

I couldn't of said it better! I am 34, with TOF!

By Jennifer on   10/21/2011 10:37 AM

Re: Investing in my Future

Beautiful Christy....just beautiful ! I also have TOF and felt much the same when I was a teen and in my 20s. I did some abusive stuff too figuring "whats the point." Then I grew married...have a son and came to the same conclusions you did. Thank you for writing this piece. I know that someone will read this and see part of themself in it!
God Bless...

By Lucia Evans on   10/21/2011 10:53 AM

Re: Investing in my Future

My "expiration date" was 25 years. As a result, I had a timeline - married, child, home... It was one month before my 25th birthday that I gave birth to my daughter..... and a few years after that when her dad and I divorced. At that point I had never had surgery (TOF, PA, VSD, MAPCA's, right Aortic Arch, and Aortic Aneurysm by the time I had surgery) - my surgery was almost 2 years ago, and I still find it difficult to live for the future. I get especially teary-eyed on my daughters birthday (12 years old). How many more birthdays will I get to share with her? I'm fortunate that I have a wonderful family, and a husband that wouldn't leave my bedside after my surgery - I'm blessed beyond measure - thank you so much for helping to remind myself!

Thank you for sharing your life with us,

By Jo on   10/21/2011 3:39 PM

Re: Investing in my Future

As a cardiac nurse, seeing patients with heart failure (usually not congenital related but related to heart attacks, viral, or hypertension) makes me strive to live my life to the fullest and healthiest that it can be. I always want to do something because "you never know" when "something" may happen in life. Being a nurse and a patient gives me a unique perspective at life. At the same time, reading message boards etc makes me always wonder in the back of my head if I have lived half of my life already. It feels good to know that "people like me"/ TGAers live on into their 40s and 50s. Unfortunately with my surgery, only time will tell if other TGA'ers will live on until their 70s or 80s. Either way, I am blessed to have the life and health that I have at the current moment. Wouldn't change a thing.

By joanne on   10/21/2011 9:25 PM

Re: Investing in my Future

In my case I was born in 1957 with ToF, I tried to do everything as soon as i could, got married at 19, was a father at 20, got divorced at 23, remarried at 25, (yes, 2 women married me!), had a 2nd child at 27, and a 3rd at, now after 3 OHS and more on the works i focus on living a slower life, now i smell the coffee and dont dwell on what's not important so i am ahead of the game and whatever will be will be....I'm not going to let my CHD rule over me. I've got 3 wonderful children ages 33, 27, and 25 and now i get to sit back, watch, and enjoy...i hope you all do the same.

By Tony on   10/22/2011 11:19 PM

Re: Investing in my Future

Christy I am so happy you were able to work through that fear because I believe that those of us with CHD deal with this in one form or another. I too was born with TOF and as you know it is a life long journey. Stay Strong!!

By Jennifer on   10/24/2011 8:53 PM

Re: Investing in my Future

Your blog really resonates with me. I had 3 OHS before the age of 10. I thought my life expectancy was 30.
Instead of living mindful....I knew life was short motto was live it up!
And did I ever.
Now at age 50, I am preparing for a pulmonary valve replacement surgery.
I am thankful for this site and that there are others like me.

By vanesa on   5/25/2012 8:07 AM

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