Can We Stop Placating Miscarriages?

“It’s for the best. There must have been something wrong with that baby.”

“God only gives you what you can handle. You are strong. You will get through it.”

“You can get pregnant again and the next baby will be healthy.”

These are just some of the lines I heard from well meaning friends and family, when I suffered through my miscarriages. Now, I realize that a miscarriage can be a delicate situation and it’s hard to know what to say to someone going through something so difficult.

As a woman who went through multiple miscarriages and then went on to have a baby who surprised us on the day of her birth with a Down syndrome diagnosis, I can tell you that all those sentiments ran through my head for months after Sienna was born. Would people think I deserved Sienna’s diagnosis because I didn’t stop trying to get pregnant? Would people think I was too old and that it was my fault?

For the record, 80% of children with Down syndrome are born to women under the age of 35. I was 36 years old when Sienna was born. I was under the age of 35 during all of my miscarriages. So, statistics aren’t always the answer. Everybody has their own unique journey.

If you want to know what to do or how to help a woman going through a miscarriage, let me give you some advice. I needed my friends and family to acknowledge that it was okay for me to be sad. I had to hide my pain from the rest of the world. People were in such a rush to hit me up with a cliche, and divert the conversation to something else because it made them uncomfortable. Stop placating miscarriages with comments like this. Let her feel pain and tell her that she can share that pain with you. Just listen.

If you want to read about my miscarriage journey, please go here.

We have been celebrating Down syndrome Awareness month all of October, but October is also Pregnancy and Infant Loss Awareness month. For all the moms out there whose sweet babies are now angels, I recognize your pain, your strength, and your loss. I am sorry.

“I think when tragedy occurs, it presents a choice. You can give in to the void, the emptiness that fills your heart, your lungs, constricts your ability to think or even breathe. Or you can try to find meaning.” – Sheryl Sandberg

 

 

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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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