My 28th Birthday Wish (Down syndrome, CHD)

28TH BIRTHDAY Down syndrome Heart Defect

Dear Jill,

Yeah, it’s awkward and a little weird that you decided to write a letter to yourself, but after all that happened in your 27th year, you need to look back to move forward to your 28th.

A year ago today, you announced your pregnancy and the fact that you were moving to a remote part of New Mexico. You were nervous but excited about what this unexpected baby and unplanned location would bring to your life. You were happy when you took these pictures.

 pregnancy announcement 3 Moving Announcement 3

You had no idea what life was about to bring you.

A month and a half after these photos, you found out you were having a son!! But you also found out he might have Down syndrome. You would pray God would “heal” him of Down syndrome. You didn’t know any better. You didn’t know much about Down syndrome and you thought it was something that would hurt your baby and hurt your family too.

It would take another move to Arizona, the birth of your second child and a couple more weeks to see how wrong you were. You love that little munchkin so much, more than you ever thought you were capable of. All was starting to feel right again.

Then you got more unexpected news, the hole your pediatric cardiologist thought may be in your baby’s heart was there. The doctors thought it would close, it didn’t. Your adorable little man would need open-heart surgery. You thought your heart had been shattered once again.

But you would see just how well your sweet boy would handle it all. What at first seemed like devastating news, would end up giving you even more confidence in the person your son will become.

A lot happened to you in your 27th year. You thought it all was unfair, but you hadn’t been through many trials in your life. What you went through opened your eyes to how fortunate you really are and how so many others are not. The entitlement you had in your heart changed to gratitude. You finally felt grateful for all God has given you.

For your 28th year, you just want an uneventful 365 days. But you realize the flaw in that desire. When you blow out the candles on your homemade birthday cake (that your adorable husband insisted on making you) ask for growth instead.

For all of your flaws, your 27th year made you better. You are stronger, you are a bit wiser and you are more empathetic. Instead of wishing for nothing to happen to you, wish that when things do (you have a two year old and a 6 month old…nothing about your life will be uneventful) that you will do better, that you will become better for your family, your friends and for the people who come to this space searching for encouragement in the crowd of racers running alongside them.

Hebrews 12:1

“And let us run with perseverance the race marked out for us…”

 

 

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Chances (Down syndrome, Open Heart Surgery)

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Down syndrome, babies, heart defect, VSD, open heart surgery. This is a follow-up piece to “The Heart of the Matter”. “Chance”, it’s the single word that’s dominated our lives for the past 9 months. Your son has a 3% chance of having Down syndrome. He has a 99% chance of having Down syndrome. You have a […]

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Dear Daughter, I’m Not Sorry Your Brother has Down Syndrome

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Dear Violet, When your Dad called me to tell me that your brother had Down syndrome, my world stopped for a minute. I dropped the phone and fell on the floor. The first thing that came out of my mouth was, “Oh God, this doesn’t feel real, this doesn’t feel real, this doesn’t feel real.” […]

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