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6 Lessons I've Learned Since My Daughter's Williams Syndrome Diagnosis

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Recently, our daughter, Arianna, has undergone major surgery. Due to scoliosis (which is a part of Williams syndrome for many kids), she had 11 vertebrate fused and rods and screws added to her back. The few weeks leading up this surgery were torture; she’s considered “high risk,” and the surgery would be a long one – it ended up lasting eight hours.

The day of the surgery, some interesting characters, clearly sent by the heavens for our entertainment, distracted us int he waiting room. We were grateful. These moments of people-watching were broken up by taking turns in the hospital chapel to pray, periods of teary outbursts and updates from the OR.

Eight hours later, we got to see our girl and start the journey to healing.

During our few days in the hospital, I was reminded of things I’d learned from the time in my life when my daughter was diagnosed. Here are some of the gems:

1. I am constantly surprised by the people who I thought would be there for us and those who actually are.

2. There are those who get it and those who don’t – the ones who get it are the greatest source of strength during this time.

3. Most of life is unimportant. Love and family are all that really matter.

4. In our families eyes, my daughter is not different. She is family, our love, our light, our blood, our soul and our heart. We will advocate and fight and give up every ounce of ourselves for her when we need to.

5. In the same way, we love our daughter just for being her. So do many others – children and adults alike. It also becomes clear who doesn’t really care and that’s OK – at least we know now.

5. Peers are wonderful – the love and support Ari has received from her classmates is heart-melting. I’m amazed beyond words. Without her friends, visits and FaceTime, this long period out of school would have been far more torture.

6. Gratitude, faith and prayer sustain us when things are difficult.

That’s just some of the lessons I’m reminded of. I’ll possibly share more but right now, my girl is waking from sleep and well, that’s what’s most important.

This post originally appeared on Successful Exceptional Education.

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Originally published: February 27, 2015
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