When Sienna was first born, one of the questions I was asked the most was, “Is she going to be high functioning?”. Down syndrome has no spectrum. It affects different people in different ways. It’s an extra chromosome in every single cell of the body. We don’t know what strengths and weaknesses Sienna will have, because she’s just a sweet baby whose personality is just starting to emerge. We love her no matter what, just like any parent loves their child unconditionally.
I am posting a picture that’s closeup of her beautiful blue eyes. If you look close enough you can see her Brushfield’s spots(speckled iris). They are little white spots that are slightly elevated on the surface of the iris arranged in a ring concentric with the pupil. These spots occur in typical children, but are far more frequent in Down syndrome. They were described in 1924 by Thomas Brushfield and are due to aggregation of a normal iris element (connective tissue). I could stare into her eyes all day. They are one of my favorite things about my girl. Can you imagine how much happier the day of her birth would have been if my Doctor chose to point those out instead of all the negatives?
What will she be when she grows up?
Author, College graduate, Artist, Business owner, Zumba instructor, Preschool teacher, Actor, Musician, Barista, Professional Golfer, Model, Body builder, Councilwoman
These are just some of the professions currently held by successful adults with Down syndrome. Before I had Sienna, I had no idea that people with Ds were capable of such amazing things. One day, you or someone you know might have a child with Ds. I hope info like this makes us all realize that everyone is capable of greatness.
The month of October is Down syndrome awareness month. If you follow us on Instagram (@thislifewegotblog), you know that we have been posting a fact, an anecdote, and pictures of Sienna each day of the month. Some of the posts have been more meaningful than others so I have decided to share a few of them. If you’d like to see all of them, please follow us on Instagram. Thanks so much! We hope you enjoyed learning along with us.
When you become a mom for the first time, your life is never the same. No matter how prepared you are, the questions come. Is this how much the baby should be sleeping? Is the baby eating enough? How much weight should the baby be gaining? How many wet diapers should she have a day? Am I doing this right? I remember calling and texting my best friends who were already mothers. Of course, I utilized the internet, but talking to other moms is a rite of passage. My cousin is pregnant right now with her first baby. She texts me with pregnancy questions. I can’t wait to get the text messages and phone calls once her baby arrives. I will be so happy to share my knowledge with her. It’s what we do as women. We support each other.
Before Sienna was born, I was excited to experience the infant stage again. I was going to enjoy the ride, because I wouldn’t be as worried. I wasn’t a first time mom anymore. But like everything with Sienna, what I expected to happen and what actually happened were two very different scenarios.
I’ll never forget how helpless I felt when I got home from the hospital with her. My husband and I were processing Sienna’s diagnosis in different ways and at different speeds. He has always been more introspective. He chooses to digest trauma internally while I seek connection and understanding from others.
I had announced Sienna’s birth and her diagnosis on Facebook days after she was born. I didn’t want to dance around it. I wanted everyone to know. While on the outside it appeared that I was handling everything with smiles and blessed hashtags, the truth is I was terrified. The congratulatory posts littered the thread. “Congratulations. She’s beautiful.” “God chooses special parents for special babies.” Did people really think I could do this? No one knew what I was facing. There was no friend to text with the questions I had. My friends didn’t know how to advise me or what to say. My Mom tried to support me as much as she could, but this was my journey. I felt alone.
What I soon discovered was that I wasn’t alone. The Facebook post announcing Sienna’s birth and diagnosis put the wheels in motion that would connect me to the Down syndrome community. I was soon connected to a local Pittsburgh mom that had a young child with Down syndrome. With that first connection, Pandora’s box opened before my eyes. Before I knew it, I was handed the tools I needed to break free of my isolation.
Within hours of making that first contact, support and understanding found me on Facebook in the form of the Down Syndrome Diagnosis Network or DSDN for short. Their mission statement is simple. You’ve got this and we’ve got you. As I was welcomed into my birth group, I was immediately connected to hundreds of mothers from around the country. As I scrolled down the group’s private page, I realized that the connection I was seeking was right in front of me. This was my new tribe.
“I can’t wake Sienna up to eat. I have tried everything. We’ve done cold wash cloths, a bath, feeding her in only a diaper. Nothing seems to be working. I’m worried. She needs to gain weight. Does anyone have any tips?”
The advice and support followed.
“It will be okay. It gets better. Try expressing breast milk and putting some in her mouth.”
“They’re so sleepy in the beginning. It’s normal. Did you buy a baby scale yet? You can get one on Amazon and it will give you peace of mind. This is the one I recommend. Hang in there, Mom.”
“Does she have a heart condition? There’s another group for heart mammas that is really helpful.”
“Do you know our kids have a separate growth chart? Here’s a link to it. Show your pediatrician.”
Every day I had a new concern, and every time I posted something I was rewarded with support, love, and knowledge. What issues did we face…..when should we start early intervention, what therapies were the most helpful, breastfeeding struggles, constipation, thyroid concerns, chronic respiratory infections, etc. The questions didn’t stop as Sienna progressed out of her newborn stage. I still find myself having concerns and questions, and there are moms in my group who are a few months ahead of me on this journey and they are armed with information.
This past weekend, I finally had the chance to meet some of the women from my tribe as we convened in Chicago for the annual Rockin Mom Retreat. My birth group is not the only one. Every year there are new babies born and new groups are started. There are thousands of moms in our community. It all began because one amazing mom wanted to create support for new mothers. This Rockin Mom is Jen Jacobs and she is an example of what we as women can create when we choose to unite and lift each other up.
I was nervous to venture to Chicago on my own. I was leaving the girls, something I had never done before. While I knew these women from behind the screen of my computer, I had not come face to face with them and I was uncertain about what to expect. I had a safety net in my friend, Beth. She was a fellow Rockin Mom, but we also went to high school together. While we were not close in high school, simply because we ran in different circles, we were immediately reconnected through the births of our daughters. Beth is 6 months ahead of me on her journey and her wisdom and advice have been steadfast since the day Sienna was born. I was thrilled to get the opportunity to unite in person and face this weekend together. This was me the morning of the retreat heading to the airport.
When I arrived at the hotel, a sea of rockin moms filled the lobby. I looked around the room to see moms sporting unicorn gear (something too hard to explain but it is our mascot of sorts), moms hugging each other, some crying, some laughing, and everyone smiling. Emotions were high and there was an intangible feeling of kinship permeating the air. Every person I saw greeted me with warmth. As Beth and I stood in line to get our welcome packets, we immediately began connecting with other moms. Beth and I are in different birth groups so we had varying connections, but there is an overwhelming sense of family among everyone.
Friday night was our first glimpse into what the retreat would look and feel like. We decided to check out the exhibits first, not knowing what they would entail. As I turned the corner, I saw tables with exhibits from organizations that had the resources to empower me as Sienna’s advocate. Julia’s Way was a nonprofit group that had encouraged me in my breastfeeding journey. They were there passing out resources. GiGi’s Playhouse was a nonprofit that opened Down syndrome achievement centers around the country. We do not have one close to us here in Pittsburgh, but there was information on how to raise money to open a GiGi’s. Signing Time was there with resources about learning ASL and how to incorporate signing into your daily life. There were authors there as well. Mardra Sikora was there sharing copies of Black Day: The Monster Rock Band, a book that she had cowritten with her very successful, inspiring adult son with Down syndrome, Marcus Sikora. Mardra also cowrote The Parent’s Guide to Down Syndrome with Jen Jacobs. This book quickly became the bible in my house during the beginning of our journey. There were many other inspirational organizations there, but these were the ones that stood out to me personally.
After the exhibits, it was time for a reception dinner. My table had women from all over, including a mom who had ventured all the way from England to be a part of this experience. There was a veteran at my table, a mom who had been at the retreat before and had raised thousands of dollars this year, because she believed so much in the experience. Her family was from Texas and they were currently misplaced from their flooded home but she still felt the need to be at this retreat. That’s how meaningful the experience had been. We shared pictures of our children. We discussed their strengths and weaknesses. I learned some therapy techniques that I had not heard of prior to this. One mom even shared a video with me and allowed me to send it to my physical therapist to see if we could look into it for Sienna.
The connection as mothers was instantaneous. We all have one thing in common. We would do anything for our kids and we want to empower each other on our journeys. Do you know how rare that is in this day in age? I had never really thought about it, but I have been gifted with something very special. Sienna is enriching my life. Had she not been born with Down syndrome, I would never have experienced something this special. The sense of family in the Down syndrome community is rewarding and fulfilling. I’m not saying this path we are on is an easy one, but this is one of the beautiful aspects of this life.
After dinner, Jen Jacobs introduced us to our keynote speaker, Rachel Coleman, who is the creator of Signing Time. If you have never heard of Signing Time, it’s a wonderful educational children’s program that teaches kids signs using music and imagery. I expected this talk to be about sign language. While that was related to Rachel’s message, her story was about so much more than that. As she shared her experiences as a mother of 2 children with special needs, the room erupted into tears and camaraderie. I thought about trying to summarize what she did and the emotions she brought out in us, but it’s impossible. Either it’s impossible or I’m just not that great of a writer, but I know my limits. I was so inspired by what she said. There have been so many times over the past year that I have had an internal victim dialogue with myself. Why me? Why us? After hearing her message, I’m going to try to stop doing that. Everyone has their own struggles in life. Life is hard. Everyone’s life is hard. I don’t own the rights to hardship.
She sang this song and there was not a dry eye in the house. I was ugly crying, Kim Kardashian like ugly crying.
If you don’t listen to the song, here are the lyrics that brought out my ugly crying.
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly Or is it now my role to simply believe? You’re just one of those mysteries That may never be solved in time But you do — you do — you shine And Sammy will do what Sammy will do when Sammy is ready to do it
And just to really hammer the ugly girl crying point home….
I strongly suggest looking up Rachel Coleman’s story and reading it from her perspective, because I cannot possibly do it justice. She captivated us for 90 minutes and I could have listened to her talk for 90 more. I was spellbound.
And as if that wasn’t enough crying, Mardra Sikora shared a letter she wrote to herself about her son, Marcus titled, When He Grows Up. Here is a link to it.
Mardra’s presence and her letter were truly uplifting. I’d be lying if I didn’t admit that I always worry about the future. Sienna has taught me to be present in each day and not to look too far ahead. I have no idea what her future has in store, just like I have no idea what Haley’s future has in store for her. Seeing Mardra and the way she speaks about her son makes me realize how much my daughters are both capable of achieving. It’s something that room full of women needed to hear.
When Mardra was done, Jen gave us all charm bracelets. We would be receiving various meaningful charms throughout the weekend. I was absolutely blown away by the thought and detail that went into planning this weekend. Jen and the women who put this together truly wanted to lift us up. As Jen was wrapping up the night, her phone started to receive a FaceTime call. She let out a shriek over the microphone as her phone was ringing. She turned her phone on all of us and said that it was the cast of Born This Way. It was a beautiful way to finish up the evening. Don’t get me wrong. That wasn’t the end of the evening. Beth and me made our way to the bar and rocked out with our fellow moms. That part of the evening is something I won’t be sharing on my blog, because some things need to be just mine.
The next day I met more women from my birth group. I hugged familiar faces and shared in the experience with them. We were inspired more by Nancy Gianni, the founder of GiGi’s Playhouse. She is another example of what a mother’s love can accomplish. She truly wanted a place for her daughter to be supported and thrive. Because of her, these Down syndrome achievement centers are all over the country and more are popping up. I am very interested in seeking information about opening one in Pittsburgh. The Pittsburgh Ds community is incredibly supportive. I really feel that a playhouse would flourish here and so would our children, but that’s another blog for another day.
One of the best portions of the weekend, for me personally, was the breakout session. We all could choose which session we wanted to attend. I chose to attend the writing/blogging session hosted by Mardra. She armed us with information and inspiration. I met other moms that enjoyed writing. We all shared our goals and offered support and resources to each other. Again, this was another example of more women lifting each other up.
After the break out sessions, we all worked on service projects. We heard from two moms whose children fought the Leukemia battle. Moms facing similar circumstances stood up as we cheered them on. More tears. When your child receives a cancer diagnosis, Down syndrome really seems minimal. A cancer coalition is in the works and we created bags for these families and wrote supportive notes to include. We also put together welcome packets for new families in the Ds community. I remember receiving one shortly after Sienna was born.
The rest of the day involved some pampering, tips on how to take care of ourselves, and lots of group photos.
We wrapped up our day at Joe’s Live for some stand up comedy and an 80s hair band. I made more connections with moms over beer and laughter. I don’t remember a lot from the evening, but I know I had fun.
I thought I was all cried out until I got home and a package from my mom was waiting. She had purchased an Alex and Ani bracelet. The inscription read, “Since ancient times, sea-travelers have journeyed to unexplored territories, answering the call of the unknown. Their discoveries are the stuff of legends and their adventures mapped the world as we know it. Like the fearless explorers who ventured off the beaten path, lose yourself to the will of the journey, and follow the divine accidents that steer you to treasures untold.” Sienna is a divine accident and I cannot wait to see what treasures she has in store for all of us.