Before I start this blog post, I want to make sure it doesn’t take too much of a political turn.
Let me start by saying that I believe every woman has a right to choose what is best for her and her family. I am grateful that I did not find out about Sienna’s diagnosis until she was born. I don’t know if I would have had the correct facts to make an informed decision. But before anyone can make such an important decision, they should have more than medical terminology thrown at them.
- 100% in Iceland
- 98% in Denmark
- 90% in the United Kingdom
- 78% in France
Watch as this amazing man with Down syndrome defends his right to live. It is powerful and extremely worthy of your time.
This part of the Down syndrome journey is exhausting and it is one of the reasons I have chosen to share our lives so publicly. I have no doubt that I will be watching a video of Sienna like this someday, advocating on behalf of herself and her peers.
I hope and pray that when she is an adult that these statistics look better. Social media has provided us the opportunity to share the amazing contributions people with Down syndrome can make to society at large. Unfortunately, so much of the issue comes from lack of, or completely inaccurate, information about Down syndrome. Even medical professionals who deliver prenatal diagnoses may do so in a biased, cold, and unprofessional manner, and some even put pressure on families to abort.
I spoke with a mom recently who had a prenatal diagnosis and was asked four separate times by four separate medical professionals about termination. For the record, when the first professional asked her, she said she wasn’t interested, but still the pressure surrounded her. That’s just one mom’s story. I have heard many more like it in my birth group.
If you or anyone you know ever gets a prenatal diagnosis or a birth diagnosis and needs to talk, please call me. No judgment from me. I’ll just lend you an ear and give you a clear picture of what life is really like when you have a child with Down syndrome. It’s far from what I imagined. It’s so much better.
I’d hate for the world to miss out on Sienna and her peers with Down syndrome. She enriches our life and the lives of the community around her.
I’ve decided that it’s pretty darn cool to have a kid with Down syndrome. Who wants a lifetime of nothing special? Not me.
Parenthood is hard. Just because a kid is born healthy does not mean that kid will stay healthy and be perfect. I am stealing a line from another mom I heard this week. When you become a mom, you worry about everything. My worry has a name. That’s truly the only difference.
We are so busy running from pain that we forget the beauty that comes out of hardship. Hardship builds character and strength. In those proverbial storms of our lives, if we trade our fears for comfort, we lose out on the character, the strength, and the beauty that emerges when a storm is weathered.
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
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
