22 July 2010

"I was born with Tetralogy of Fallot"

Behold, the power of Google!

I haven't Googled Tetralogy of Fallot much for fear of what I might find. I've been very fortunate that many other heart moms who blog have also found me, some of them having babies born with Tetralogy of Fallot (ToF). I can't tell you how encouraging it's been to meet these moms who can validate every feeling and fear I've had, and also offer encouragement and hope as we get ready to face the reality of this defect in Ewan's heart.

But I Googled it yesterday, and I can't really tell you why. I was looking for more personal accounts, more stories. And I found a piece written by Adam on the Saving Little Hearts blog, someone just a few years younger than myself who was born with ToF .

One thing I've struggled with since finding out about Ewan's heart was guilt for the challenges he would face in life that so many children don't have to deal with: surgeries, medications, being a lifelong heart patient, wondering if he would be able to be as active outside the womb as he is in it. Reading this was so encouraging. This young man views his struggles as a gift.

In one of the closing paragraphs, he writes:
I will say this, if God had given me a choice to enter this world as a completely normal and healthy boy or as a boy with Tetralogy of Fallot, I would choose to have the Tetralogy of Fallot every single time. My life is a blessing that I wish never to take for granted. Because of my heart, my perspective on life has drastically changed. I cherish each day and try to live from an eternal perspective. Also, my relationship with God without my defected heart would not be the same as it is now. He has matured me and developed me through perseverance in the dark hours and therefore teaching me how to trust Him. Among the so many things I have learned, He has taught me to have the right attitude no matter what. Our attitude determines the choices we make. I could just have easily chosen to deny my heart struggles and become angry with God and the people in my life. But, with His help (and I would not be here without Him) and guidance, He brought me through safely, stronger, and wiser. He has replaced that fear I experienced as a 16 yr old with joy and gratefulness. I am so thankful for my heart defect. I would not be who I am without it. 
I can only hope that Ewan one day has a perspective that is similar to what Adam expresses: that this is a gift, that this brings him closer to God, that it helps him to trust God all the more. I know that's what this heart defect is doing for Ewan's parents.

Read the full piece here: 


Unknown said...

What a beautiful way to view such a scary thing. I can only hope to have that much perseverance and determination, as well as such a positive outlook.

Rebecca said...

Wow, that's a really encouraging testimony. I pray that your Ewan has the same God-centered, eternal perspective.

Stefenie said...

It is ok to google things. I am the same way. However I do know there are things that you can find out there that are frightening and upsetting so try to avoid those.

I think it is great that you came upon such an inspiring guy who shares the same defect as your little guy to be. It is great to make connections with adult CHD patients because they can provide a lot of hope for your child's future!

Shannon said...

What a great result to your Google search!

Adam is very inspiring. It's comforting to know that as the one actually going through it (especially being a teenager), that he wouldn't change a thing. I read something written by a 20 year old HLHS patient that said the same thing. As a heart mom, that brings me much comfort. I hope that one day my little guy feels that way too.

I think it's ok to search. I searched a LOT when we first found out about Derrick. Sometimes it ended in heartbreak, but not always. I found some great stories and people who I still read about now. It's a way of satisfying that urge to know the 'what ifs' even though all of the stories are so different. Or maybe I'm just impatient and nosey....either way, I still search! I can't help it, and I'm ok with that! :)

Sheyda said...

Hi i am a 21 year old Girl born with ToF.. the condition is rare in womens but i have had the blessing to have it.. i like Adam would say that my heart problem has made me the mature women that i am today. Other than heart problem i was born with other congenital problems i.e. congenital brain injury. although i have had 5 surgeries and my life is not the same or easier than others i have to be hones t to say i see more in life than people with normal health i defenitly appreciate life more than those without my condition. I am now in University syudying human rights hoping to save many lives. even thought i dont know how long i have to live this challenge of achieving before i am to be united with god has made me detarmend to achieve so much .