We Treasure and Enjoy Her Every Day

When our newborn daughter was diagnosed with Turner syndrome, my husband and I were confused and sad. While we knew God's plan for her was perfect, we also knew nothing about TS and had no idea what to expect.

Would she be smart? Pretty? Kind? Would she make friends like ‘normal’ children? Would she know how to connect with others? Would she have children of her own some day?

We prayed and hoped and thanked God that our sweet little girl was healthy. She had heart surgery at six weeks old and recovered like the little fighter she still is today. Sadly, she was unable to breastfeed, so I had to pump and then feed her from a bottle.

She has a horse shoe kidney, a coarctation of the aorta, and virtually no ovary function. But we've made our peace with those issues and feel so blessed. Because today, at two and half years old, our little miracle is the smartest, sweetest, most fun child we ever could have imagined.

She spends the whole day smiling, telling us she loves us, learning as fast as she can, and bringing us more joy than we've ever known. By 18 months, she knew all of her letters and the sounds they made. She knows all of her books by heart, remembers everything we tell her, and is already learning to sight read. So far, she has no trouble with some of the "typical" things that can prove difficult for girls with Turner syndrome.

She has excellent spatial reasoning, and was doing complex puzzles very early on. She knows her way home from our usual places, like the grocery store. She can tell me what street we're on and which way to turn. She knows which way is left and which is right. She reads facial expressions well, and picks up on changes in other people's moods. She apologizes when she hurts someone, says please and thank you, and speaks in full sentences.

Her language is so advanced, in fact, that she can tell you an entire story with correct grammar and tenses. Her intellect astonishes us. She's smarter than both of her parents combined! She can be shy in large groups, but has such a warm, accepting way when she meets new people. She LOVES to make new friends.

Going to the nursery at church is her favorite thing to do all week. While she's very petite, her growth has been on track so far and the doctors say there is no need to think about hormonal therapy at this point. Her behavior has been very ‘normal.’

She doesn't have trouble concentrating or sitting still. She does have the typical toddler outbursts and breakdowns. We call her our little pistol; but nothing I wouldn't expect from a child her age. Even if she struggled with every single thing that can come with TS, she would be amazing, and we'd be so happy to have her! Because there are so many worse things to have.

Like my husband and I always remind each other; everyone has something. We all have issues and challenges. Turner syndrome happens to be hers.

I would say to any parents with a little butterfly or to expecting parents with a TS diagnosis: Don't be afraid or discouraged. Your precious daughter is a miracle, and if she's anything like ours, she'll be bursting with love and curiosity and an excitement for life that is so infectious!

While I know there are some difficult conversations ahead of us, and some struggles to help her through, we wouldn't change a thing. She's perfect and your butterfly is, too!

Treasure her and enjoy her every single day.

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The Turner Syndrome Society's mission is to

advance knowledge, facilitate research, and support all those touched by Turner syndrome.

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