I haven't blogged much lately. Not much is going on. Will is doing really well! We haven't been to see a doctor for him in over a month. I noticed that happened last August too. He has had some trouble with allergies but that is fairly normal for us.
I am writing today to share this story. I have read stories of people with TOF that are quite a bit older and they are encouraging...but they also described a lot of trouble with their health, not being able to keep up with their friends, not being able to play sports, etc. I'm so glad those people are willing to share their encouragement, because the moral is that their lives have ended up great. There's also the example of Olympian Shaun White...but he is a little larger than life and his story seems too good to be true. So that is why I'm so glad to have seen this one:
I'm
29 and Dr. Pacifico repaired my textbook ToF at 14 months old. Life has
been full and unrestricted. I've had both normal pregnancy and been
"allowed" to adopt while others with different medical conditions are
sometimes not allowed to do so. We plan to both get pregnant and adopt
again. I ran my first half marathon in February. While I was slow based
on how much training I did, I finished in the top 80% and was proud to
say I am now a runner!
I'll undergo my second surgery ever
sometime in the next year to several years to replace my useless
pulmonary valve. That surgery is expected to be nothing but an upgrade
on future quality of life... a good news surgery.
I was always pretty vain -- into fashion and looks growing up -- yet my
scar never bothered me a bit. From a tiny age, my mom sold it to me as
a mark of gratitude for life, and I bought into that. Truthfully, I
wouldn't lose the scar if I could! (And as a baby after surgery, I fell
on the rung of a rocking chair and mangled my healing sternum, so the
shape of my chest bone is disfigured. I'm even mostly okay with that.)
I just want to encourage you all. I can't imagine being the parent
wondering how life will go for my child. From my perspective as a
child/now adult living with ToF, heart issues have been an
afterthought... nothing but a reason to be thankful for a body that
works.
-R
(Hearing from a 29 year old means she probably got a repair that resembles what Will had. The older TOFers mostly had a repair called the BT Shunt.)
I have been in the middle of a week-long sigh of relief after reading this. :)
I was always pretty vain -- into fashion and looks growing up -- yet my scar never bothered me a bit. From a tiny age, my mom sold it to me as a mark of gratitude for life, and I bought into that. Truthfully, I wouldn't lose the scar if I could! (And as a baby after surgery, I fell on the rung of a rocking chair and mangled my healing sternum, so the shape of my chest bone is disfigured. I'm even mostly okay with that.)
I just want to encourage you all. I can't imagine being the parent wondering how life will go for my child. From my perspective as a child/now adult living with ToF, heart issues have been an afterthought... nothing but a reason to be thankful for a body that works.
(Hearing from a 29 year old means she probably got a repair that resembles what Will had. The older TOFers mostly had a repair called the BT Shunt.)
I have been in the middle of a week-long sigh of relief after reading this. :)
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