The Diamonds in Her Eyes

“Mommy, why does Sienna have diamonds in her eyes?” Haley asks as she stares into her sister’s eyes while they embrace.

I smile. “They do look like diamonds, Haley. They are called Brushfield spots. People who have Down syndrome can have them.” 

Brushfield spots are beautiful white specs that are slightly elevated on the surface of the iris. They are arranged in a ring concentric with the pupil. These spots do not have an effect on vision and normal functioning of the iris and pupil. Some people say they resemble stars. Haley saw diamonds. They are by far my favorite genetic trait associated with Down syndrome. I could stare into Sienna’s beautiful diamond eyes all day. 

 

Typical individuals can have Brushfield spots as well, but they are much more common in folks with Down syndrome. I wish that the nurse and doctor who delivered Sienna’s diagnosis had pointed out the beautiful diamonds in her eyes. That would have shown me just a small glimpse into the beauty of this life.

When I watch Sienna take in the world around her, I think she sees things in a different light, a brighter light. She sees the world as a more joy filled place than the rest of us. And that could quite possibly be, because of the literal twinkle in her eyes.

“Everyone wants to be seen. Everyone wants to be heard. Everyone wants to be recognized as the person that they are and not a stereotype or an image.” -Loretta Lynch

 

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We Have A Walker

108 Early Intervention Physical Therapy Sessions at home

62 Aquatic Therapy Sessions at the Children’s Institute

62 Land Based Therapy Sessions at the Children’s Institute

For those of you counting, that’s 232 hours spent in physical therapy leading to this moment right here:

 

I have been desperately searching for the right words to stress the importance of this monumental occasion. When any child walks for the first time, it is something to be celebrated. For our family, this is one of those examples of ordinary moments becoming extraordinary.

Some days, this life is challenging. There are days that I want to cancel every therapy session and go do something spontaneous. Then, we have a moment like this, and I remember why we work so hard. I have had the privilege of watching this baby progress on this journey. I saw her struggle and fight, with grit and determination, like no one I have ever seen. I am gifted with this unique experience that very few people get to witness in a lifetime. She has had to fight to roll over, to sit up independently, to cruise, to stand, to crawl, to creep. Nothing came easy to her. It has been brutal work and taken loads of time.

Did you know that the body uses approximately 200 muscles to walk? These muscles must coordinate and communicate with your brain in order to hold you upright, put one foot in front of the other, direct your motion, and get you from one place to another. This is something that parents wait for, camera in hand, to capture. Every parent can recall exactly how old their child was when they began to walk.

Now imagine that your body worked a little differently, and your muscles were so relaxed that you possessed superhuman flexibility.

Could you put your feet up over your head? No problem.

How about a split in your stroller? Piece of cake!

Could you use those 200 muscles to work together and walk?

Yes! It just might take you a little longer….27 months to be exact

But it would be that much more exciting to finally achieve your goal. It would take vast amounts of energy, time, and determination to succeed. Your mommy would be by your side the whole way and when you finally walked, she would celebrate this life changing moment. She would record it and watch it over and over.

At 2 years and 3 months old, sweet Sienna Mae became a walker. I ugly cried like I had just watched Toy Story 3. Congratulations to my precious girl.

I’d be leaving out a huge part of this puzzle if I did not mention Sienna’s therapists. I cannot say enough positive things about their dedication and commitment to my child. They have been a rock for our family. They have given us the tools that led to this moment. If I didn’t acknowledge them, I wouldn’t be sharing our true story. They are the unsung heroes. Thank you, Peggy, Amy, Lydia, and Sammy! We love you.

“Great people do things before they’re ready. They do things before they know they can do it.” -Amy Poehler

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Sharing Life with Sienna

I made this video to show to a group of students studying to become genetic counselors. Genetic counselors typically deliver a prenatal diagnosis. A dear friend and fellow rockin mom and myself presented information to them about how wonderful life is with that little something extra. I think we truly made an impact. Our hope is that they walked out of that classroom knowing they can share some wonderful stories about our kids and the resources available to families. This kind of advocacy work is the most rewarding, because you truly feel like you are making an impact. The following video has been shared over 400 times and has close to 30k views. Please continue to share. This could help a mom struggling right now.

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