Remembering Grace

I follow many families on Instagram. Most of them have children with Down syndrome and I love to feel inspired by getting a sneak peek into their everyday lives. I hope to be an inspirational family too.

For the past few months, I have been watching the ups and downs (no pun intended) of a set of twins. They were born premature last May, a boy and a girl. The little girl was born with Down syndrome and an AVSD (which is what Kara has). I regularly scrolled past these babies and their updates. Their beautiful pictures. Their milestones. This little girl was always in the hospital and always attached to a machine of some sort. Every time she had a dip in her health, I would hold my breath until I saw a follow up post. I was always hoping to see her mom’s usual words:

fighter

progress

stable. 

#heartwarrior.

Last month, however, after a long hard fight with back-to-back health issues, this little girl took her last breath. When I first saw the words, I didn’t quite understand them. I sat in shock, looking at the last picture of this beloved baby. The night she passed away, I sat at my desk sobbing (and am tearing up as I write this). I wept for this baby and the loss of such an innocent and precious life.

I felt so helpless. I didn’t know these people, but I felt connected to them. I followed their all too short, 6 month journey on social media… something that can be so distant, yet so intimate at the same time.

I couldn’t help but go into Kara’s room as she was sleeping. I needed to hold my healthy baby just a little bit longer that night. I pulled her out of her crib and held her tight. As I rocked her in the shadows of her nursery, I felt so thankful that my little family is in good health. We live comfortably and don’t have much to complain about. I love her unconditionally.

It kills me to know that such a large percentage of pregnancies are terminated based on a Down syndrome diagnosis. Even though this baby’s time on Earth was short, she still deserved the chance to fight. My baby deserves that chance too. I literally can’t imagine what I would do without my Baby Lemonade. Sure, we have our Down syndrome related struggles, but if not DS, then what else would it be? Life is chock full of challenges, why would I run from this one?

I have said it before and I will say it again, having a child with Down syndrome is no scarier than having a child in general. Sure, it comes as a shock, this isn’t something that you plan. Sure, it might be different in some ways, but I promise they will cause you just as much stress, chaos, and exhaustion as any other kid. They will also show you that your capacity to love is greater than you ever imagined and they will put a grin on your face every single day.

Ever since that somber night, I have kept that baby girl in the back of my mind. She reminds me to coast as slowly as I can through each day and enjoy every second I have with my almost 6 month old. It is easy to drown in the chaos of everyday life, but I vow to make the most of the time I have. Isn’t that what it’s all about anyway? I hate that my reminder was something so tragic, but I’m hoping that that family may find some peace in knowing that their story has made an impact on the way I view my world.

Having a child with Down syndrome is no scarier than having a child in general and it is also AMAZING beyond words. Let’s advocate awareness, acceptance, & inclusion. The world could use someone who smiles more.

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6 thoughts on “Remembering Grace

  1. Aww, what an important thing to keep in mind – that life is precious, it’s short (for all of us!), and we should enjoy and cherish our loved ones. ❤ I’m so sad for that sweet girl’s parents. 😥

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      1. Yes, we certainly all DO deserve our life! 🙂 As Dr.Sears so sweetly put it in his book “The Birth Book,” “Our seventh child, Stephen, has Down syndrome (which we did not know about because we did not have AFP, or triple screen). He is a wonderful child, accepted by all who know him, and responsible for much personal growth and maturity in each member of our family. As with any challenge, our lives have become richer because of the birth of Stephen.” ^_^

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  2. I too am always amazed at how deeply we can be impacted by the families we see on social media. Mine was @hellonorah on instagram, her baby was born with Trisomy 13 and not Trisomy 21 like my guy, it meant her little girl only lived a few days. God used that to remind me to be so thankful for Trisomy 21, for me it meant my little one is here with me every day to snuggle and love. Thanks for sharing on the T21 bloghop.

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