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: