Celebrating Down Syndrome

Hello again! Remember, when I said that I was going to be blogging a lot more in 2018? Well, 2018 decided to throw me a few curve balls. That’s okay though, I am rolling with it. I am still trying to create space where there was none. I have so many topics that I am itching to write about right now….how Sienna chose to stop breastfeeding suddenly, the week Haley broke her arm and Sienna got a double ear infection, the fact that Haley starts kindergarten this fall, how I have no idea where we will be living, Sienna’s progress in therapy, etc. The list goes on and on and I promise that I will get to all of them even if it takes me through the end of 2018.

Ultimately, I decided that I cannot let 3/21/18 go by without acknowledging how amazing it was for our family, this year. March 21 is World Down Syndrome Awareness Day, because every person born with Down syndrome has 3 copies of the 21st chromosome. Get it? 3/21? Anyway, in 2017, we were on vacation for our first WDSD. We embraced the silly sock tradition. We rocked them at the pool and at our resort. We hadn’t told Haley about Down syndrome yet. She asked why we were wearing silly socks and I told her that it was silly sock day. We were teetering in this grey area. I was fully in love with my baby, but I was still discovering the implications of her diagnosis. I still had doubts in the back of my head about how our future would look. We weren’t quite ready to completely celebrate and embrace the day, and that’s okay.

If there is another mom out there reading this right now, and you aren’t quite ready to celebrate, I say to you, it’s okay. You will get there when you get there, and you should never pressure or force yourself, if you aren’t ready. I remember beating myself up a little bit about it last year, but my feelings were completely valid.

This year, I was ready and it came naturally. Nothing was forced. I didn’t have to push myself. Sharing Sienna and how amazing her and her fellow buddies with Ds are makes me feel good. Haley knows all about Down syndrome now, and she understands, to the extent that she can understand. She still has questions, but to her, Sienna is just her sister. She’s the same baby she’s been laughing and playing with since she was born. Haley doesn’t care that Sienna isn’t walking or crawling. She doesn’t care that she has to go to therapy 4 times a week. She loves her because she’s her sister.

I asked Haley how she would feel if we read her classmates our favorite book about Down syndrome, and taught them all about Sienna, and how we think she is very special. Her first question was, “Can I stand in front of the class and answer the questions with you?”, because Haley is a diva. I told her she could only answer questions if she knew the answers.

Haley’s preschool embraced us with open hearts. The teachers even had the brilliant idea to have the children decorate their own socks, before we came in. When we came in to read, “47 Strings; Tessa’s Special Code” they all had their silly socks on. It was such a great suggestion by the teachers and a fun way to get the kids involved. I am so grateful to Haley’s preschool. It is the absolute sweetest place in the world.

As soon as we were introduced by the teachers, we had the children’s full attention. They were all taken with Sienna immediately. The teachers asked the kids to welcome Sienna with a cheer. Immediately after their loud welcome, Sienna giggled and yelled her classic hiiiii. We explained why we were there and why they were all wearing their socks that day. We told them about Sienna having Down syndrome and what that might mean. We read the story (which is a fabulous story for little kids to understand Down syndrome) and then answered questions. The book discusses how everyone has a special code that determines what color eyes you have, your hair color, your interests, etc. Everyone has 46 strings in their special code, except people with Down syndrome. They have 47 strings and that just means that they might do things a little differently. I talked a little bit about her muscles, and how they make it hard for her to walk and crawl.

I knew walking into this that there was a possibility that the kids might say something that would hurt my feelings. I thought they might treat Sienna differently. I knew I had to give them grace. Kids have no filter and that is okay, especially when we are talking about this. I want them to ask every question they have, when their little hearts are being shaped. Teaching them about acceptance now will help Sienna in the future. Empathy can be taught. We can’t be afraid to talk to our kids about people being different. You’d be amazed at how much more open minded they can be when they learn these lessons at an early age. Haley comes with me to the Children’s Institute and we have seen some severely disabled children. Haley does not skip a beat. Just this past Monday, she walked right up to a little girl in a wheel chair and asked her if she’d sign her cast. It makes me so proud. She is being exposed to this at a young age and I am grateful for that.

As a mother to a child with a disability, I want other parents to know that you never have to be embarrassed if your kid asks a question about Sienna in front of us. Your kid might say something negative about her appearance in front of me, and that’s okay. Your reaction is the important thing. Create an open dialogue. Don’t hush your child and run away. You are teaching them that Sienna’s disability makes you uncomfortable and we don’t want that. Introduce your kid to Sienna. You and I can explain together. I will give your child and you grace. It takes a village. We all have to do our part.

Back to story time…when I was done reading, the questions came…..”My mom says Sienna will have a hard time learning new things.” This one was a little tough, because truthfully she might, but we don’t know that for sure so my way of responding to this one is….we don’t know what her strengths and weaknesses will be until she starts going to school, but she’ll go to school and do all the same things you will. “Why do some people have Down syndrome?” Great question for a 5 year old!!! I said my standard answer to this one. God makes people in all different shapes and sizes and he loves us all the same. He made Sienna with an extra string. It just means she does things a little differently, but different is okay. “When will she walk?” We don’t know when she will walk but she goes to therapy to help her learn how to use her muscles because they are different than ours. We talked about how one of the kids in school has a sister the same age as Sienna but this sister is walking. Sienna isn’t walking yet, but she is doing a ton of talking. There were lots more questions. Haley even took off Sienna’s orthotics (her idea) and passed them around the room for everyone to see. She stood proudly next to me, calling on her classmates.

After story time was over, it was time to play. Sienna and I stuck around for a while. The children all took turns waiting on Sienna and serving her different play food from their kitchen. They sat next to her, talked to her, hugged her, and giggled with her. It made my heart so incredibly full to see how much love these children had for my sweet baby. They knew she was different, but they didn’t care! If I could freeze them now, I would. I hope this is what the future holds for my sweet Sienna. I hope she grows up in a world full of people that embrace her, and don’t focus on what is different about her. These sweet kids did not care. They saw a happy little baby and they loved her.

It was a wonderful day for all of us. It was great for Haley, because she got to teach her friends about her sister, which made her feel special. It was great for Sienna, because she loves kids and socialization. It was great for me, because it reaffirmed that being her advocate is a gift. It is something I need to continue to embrace.

How else did we celebrate WDSD? I continued my fundraising efforts for the Down Syndrome Diagnosis Network. I am so close to my goal of $3,000. This money will help so many families facing a Down syndrome diagnosis. They have been my lifeline during some of my family’s darkest days. The fellow DSDN moms are my other family. I have learned so many things from them. They are my friends and my cheerleaders. No one gets my journey more than them. I wouldn’t be so passionate about raising money for them if I didn’t truly believe it made a difference. I cannot thank all of you enough for your support with this cause.

AT&T Sports Net was kind enough to donate AMAZING Pirates tickets to raffle off to anyone in Pittsburgh who donated $21 or more. Winners will be announced soon! Huge shout out to Katie Walos for your help with this.

Flynn Construction donated $500, and in addition to that held a fundraiser on 3/21 that raised $375. A huge thank you to all of the Flynn employees that donated to our cause. Rachel Smith, their Human Resources Generalist, was kind enough to take time out of her personal life to help coordinate these ideas and make ribbons to sell. Thank you so much, Rachel! We also couldn’t have made the ribbons if I didn’t have my extremely talented friend, Rebecca Franceschi, to coordinate the craftiness.

We also have another local fundraiser coming up on March 31 (Easter Eve). We will be filling local yards with candy filled eggs, and a note from the Easter Bunny. $25 for 20 eggs and $50 for 40 eggs. We already have 9 houses signed up!!

I have another huge thank you to give to my very dear friend, Diana Rodgers. Not only has her family donated, but she also organized a Matilda Jane party and 20% of the proceeds went to DSDN. Her party got us over $350. She also organized a meal train during one of the toughest times of my mom life. My SPCNS moms are my other mom tribe, and I am so grateful for them.

I have lived in Pittsburgh for 10 years and I have a great network out here. In Philadelphia, I went to an all girls Catholic high school, Nazareth Academy. I have not seen some of these girls in 20 years, but I had dozens of donations to DSDN from my fellow alumnae. Oh dear, my dear NA! I love you ladies!

If you haven’t donated yet, here’s a link to our fundraising page: https://dsdn.networkforgood.com/projects/45129-shannon-striner-s-fundraiser

THANKS to everyone who donated:

Bob and Carole Brauckmann

Dave and Lisa Glenwright

Jim and Linda Daly

Tom and Carole Leeland

Tarah Leeland

Greg and Kathy Silenok

Donna Brauckmann

Mary and Bob Dunphy

The Lenhart Family

The Foster Family