Unexpectedly Beautiful

Since our appointment with the cardiologist, I have been very emotional. Even more emotional than I have been through this extremely emotional pregnancy of mine. I just can’t seem to wrap my mind around the fact that my baby will be having a major surgery before she’s a toddler when I have yet to break a bone *knock on wood*. I have been in touch with some other moms that have watched their babies go through open heart surgery. Part of me thinks that I’m crazy for wallowing in self-pity over a partial defect, when everyone I’ve talked to so far has dealt with much worse. The other part of me agrees with their responses: It’s okay to feel this way! I am now a mother. This is my child. It’s okay to be worried about every little thing, let alone the big things! Connecting with these other moms has put me in a better place, mentally. It is a good feeling to know that you’re not alone in feeling a certain way. I promised that I would allow myself time to grieve and adapt to these things, but I also know that I need to keep moving forward.

In the meantime, I have found inspiration in what is left behind after the surgery. I have been looking at pictures and videos of children with giant scars down their chests. It’s heartbreaking, but it’s also unexpectedly beautiful. It is something to be proud of and I plan to teach my daughter that. I will tell her to wear it proudly! Baby Girl’s scar will be a reminder of her strength, the fact that she has life, and that we can overcome anything that is thrown at us. If we can trade a congenital heart defect for a scar, then I will take the scar any day!

I am sure that as her surgery date approaches (whenever that may be), I am going to be





Of course I will be.

Until then, I plan to put one foot in front of the other and continue to prepare for life after she’s finally here. As of today, that is approximately 14 weeks away! Time seems to be flying right by me!

Speaking of preparation, registering for a brand new baby is an INSANE task!

I thought registering for a wedding was difficult, but in hindsight, that was a cinch! We already had a spatula, why would I register for another?

A baby, on the other hand, needs all of the things that I haven’t accumulated over the past 27 years… Diapers, bottles, a crib, car seat, stroller… I have been slowly building our registry for months now because it is so overwhelming! Of course I knew we’d need things like diapers and wipes, but there is so much more that goes into it. I need how many different types of bottle nipples? There are how many different kinds of high chairs? Why are diapers so expensive? What the heck is a Boppy? …Out comes my Type-A personality. I question almost every item on safety, style, cost, convenience, longevity, and efficiency. I simply can’t help it 🙂

It gets a bit harder with our Down syndrome diagnosis. I  research every item to make sure it will accommodate her needs. For example, we won’t be using sippy cups, we’ll be using straw cups because they promote better oral motor development. I look for toys with bright, stimulating colors and small, easy-to-grip handles for short fingers. I need to make sure that she’ll be able to get extended use out of some items that maybe a typical baby would grow and develop out of before she reaches that same milestone. Take a bathtub for example, some are only recommended for up to 6 months of age, but what if she’s not sitting up on her own yet? Everything is taken into consideration.

For the most part, her registry looks like any other baby’s. Because that’s exactly what she’ll be: our beautiful baby.

2 thoughts on “Unexpectedly Beautiful

  1. Oh my gosh I just want to have coffee with you! My 3 year old was born with Down Syndrome and a heart defect. I have a “typically developing” 5 year old, I did not end up getting different toys because of my younger one was different. Check out my blog about our experiences raising a little dude. Ask me any questions about open heart surgery or raising a little dude with DS.


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