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

Nathan Palm

The Weaver Family

The Frannys

My SPCNS Family:

Diana Rodgers & Family

Heather Blum & Family

Allison Kappes Metz & Family

My NA Girls:

Erica Baselice & Family

Kristi Mortgridge & Family

Bridget Dever & Family

Carolyn Ochmanowicz Shimp & Family

Lori Tuminski & Family

Dana Grugan & Family

Nina Ingulli & Family

Maureen Skaates & Family

Marcelle Noushig Chamavonian & Family

Rae Ann Orapallo & Family

Julia Snyder & Family

Jessica Hoopes & Family

Brigette Wildermuth & Family

Erin Dewalt & Family

Our Incredible Neighbors:

Silianoff Family

Matt, Bea, and Asher Dias

Caruso Family

Laurel Roberts

Renee Ranier

Lauren Sims

AND anyone who donated anonymously!!!

Sienna says thank you!

 

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My #Metoo Story

Like many women I know, I have a metoo story. It set a precedent for me. Take a walk with me back to 1993. Meet 12-year-old me. I’m beyond awkward. I have braces with different color rubber bands. Puberty hasn’t hit me yet, and I have a god awful 90s haircut. I haven’t quite figured out where I fit in. I’m in 7th grade.

I went to a small catholic grade school in the suburbs of Philadelphia. I wasn’t interested in boys and they weren’t interested in me. I spent more time arguing with boys about football than flirting with them. There were less than 10 boys in my entire grade.

Back then, computer class involved breaking up into groups in a computer lab and playing games like, “Where in the World is Carmen San Diego?”. One random day, our teacher broke us up to play a game. She walked out of the room and said she would be right back. She wouldn’t return until right before the class ended. I don’t know what was going on in her personal life that day, but it was more important than teaching. She had partnered me with 2 boys that I did not like. Let’s call them Alex and Josh. Alex’s mom was the 8th grade teacher at my school. Alex pretty much did whatever he wanted. He never got in trouble. Josh was his sidekick and laughed at everything he said and did. They honestly reminded me of Beavis & Butthead.

I logged us onto the computer we were sharing and started to read the instructions. Alex interrupted and said, “I have a better game to play. It’s called Nervous. I’m gonna touch you and if you want me to stop, just say nervous and I’ll stop.” I had heard of this game from girlfriends in school. I had no desire to play this game. I said I didn’t want to, but he persisted. I remember his hand rubbing my thigh. I remember pushing it away and saying no. Josh laughed the entire time. I kept getting up and pretending to need something from my desk. More boys around the room got wind of what Alex was doing and they all peeked over, laughing while it was going on. At one point, Alex grabbed my hand and put it on himself over his pants. I yanked it away and asked him to stop. His next move was to quickly stick his hands on my breasts. Again, I pushed them away and asked him to stop. He just laughed and continued. It was agony. I didn’t ask for it. I didn’t want it, but I was just a kid, and there was no teacher in sight. I remember crying on the bus ride home. I remember girls on the bus calling me a slut.

I came home from school and I told my mom everything that had happened. I didn’t want to go back to school the next day. My mom wanted to march down to school and kill Alex. I insisted that she let me handle it. I just wanted the whole thing to go away. She said that I was old enough to know what was right and what was wrong. Standing up to a bully takes courage and she knew I would do the right thing. I wasn’t so sure. I barely slept the night before school.

I went to school with every intention of moving on and acting like nothing had ever happened. I got to school early that day. There were a few kids in class and one of the boys started singing, “Tell me lies. Tell me sweet little lies.” Then, he called me a slut and a liar. That was all it took. I snapped. Our home room teacher walked in the room. He was the only male teacher in the school and he was my favorite teacher. I asked if I could speak with him in the hall. He asked me if everything was okay. “No” I said while shaking. “Mr. Bellino, when I was in computer class yesterday, Alex was touching me and when I asked him to stop, he wouldn’t.” His face looked enraged. He told me I was brave. He said, “Thank you for trusting me. In order for me to help you, we have to tell the principal. I will be by your side the whole time. Do you think you can do that?” We marched to the principal’s office (a nun) and he said, “Tell Sister what you just told me.” I repeated myself.

The rest of the day involved various kids being called out into the hall and questioned all day long. The computer teacher acted shocked. She asked me how it happened under her watch. Meanwhile, she wasn’t in the classroom during the entire period. I simply said, “You weren’t there.”

The boys around the room started yelling at me, asking why I had brought them into it. I hadn’t. I’d only mentioned Alex. He threw them all under the bus, insisting they had told him about this game and they’d played it with other girls. My mom was called down to school. A little before lunch, I was called out of the room and asked to go into the church. As I walked down the aisle, I saw Alex and his mother (the 8th grade teacher), let’s call her Mrs. Alvorado. My Mom was sitting there too. I slowly walked down the aisle. My Mom looked so proud of me, but I’d never been more scared in my life. Mrs. Alvorado ran that school. She’d been teaching 8th grade there forever. She had a reputation of being tough on girls. The next part, I barely remember. I just know we walked out of the church vestibule agreeing that Alex being suspended for 3 days was sufficient. He mumbled, “Sorry.” under his breath and refused to make eye contact with me.

After his suspension ended, teachers kept our desks separated. We still attended every class together. As time went by, Alex got more and more comfortable and went back to his troublemaking ways. He called me names under his breath, when no one was paying attention. Everything that came out of my mouth invoked an eye roll or some joke on my behalf. Worst of all, was the judgment that came from female teachers and kids in my grade.

My grade school went up to 8th grade, then it was off to high school. I just had to get through one more year. I had a best friend who remained loyal to me through it all. If it wasn’t for her, I’m not sure I would have made it. Over the summer, my mom was told that we had two options for 8th grade. I could either switch classes and have Mrs. Alvorado as my teacher or stay in the same home room class with Alex. If I switched classes, I wouldn’t be with any of my friends. These were all the same kids I’d been with for years. I was terrified of Mrs. Alvorado. I had been handling Alex’s harassment for months. If I had to, I could endure it, but I didn’t feel comfortable trusting Mrs. Alvorado to grade me with an unbiased viewpoint. My grades were extremely important to me. I told my mom that I’d rather stick with the same home room.

Eighth grade was one of the toughest years of my childhood. I could go on and on about it. I cried so many days. I never wanted to go to school. The female teachers treated me differently after that. They were friends with Mrs. Alvorado. I felt like they didn’t believe me, or they were judging me for tattling. I learned at an early age that telling the truth and exposing inappropriate behavior resulted in more hardship for the victim than the perpetrator. It shaped me. It was the culture of not tattling.

Not everyone in this story was a villain. Mr. Bellino checked in on me often. He wasn’t my home room teacher in 8th grade, but he wanted to make sure I was okay. He was more supportive than any other faculty member in the school. I’ll never forget him and all he did for me. Teachers have the ability to make a huge impact on our children.

I ended up at an all girls high school in the city after that. Not one girl from my grade school went to my high school and that’s the way I wanted it. We ended up moving into the city and I put it all behind me.

As I grew up and attended college, I had a summer internship. We had a team building day and alcohol was involved. I was under age, so I didn’t drink. At the end of the night, I ended up in a car with one of the male managers. He shouldn’t have been driving. He pulled into a gas station and tried to stick his hand up my skirt. I pushed him off and asked if we could please leave. Thankfully, he stopped and we drove home. I quit my job the very next day. I ran away from it, because I knew coming forward wasn’t an option. I couldn’t bare the idea of seeing him every day. I knew it wouldn’t solve anything and people might not believe me.

This is the culture I grew up in. I learned at an early age that telling the truth can make things harder for you. I think about all of the victims coming forward now. I pray that they’re being protected, that they are not being met with judgment. We have to do better. I want my girls to grow up in a culture that supports truth tellers.

I worry about them. Haley is affectionate. She will talk to anyone. She is caring and giving. I love all those things about her. I see so many great things headed her way in the future, but I worry. I worry that someone will take advantage of her. Then, there’s Sienna. I try not to think too far ahead, but I am terrified to send her to school. Did you know kids with intellectual disabilities are 4 to 10 times more likely to be victims of abuse? How will I protect her? What if she isn’t able to communicate yet? I know I can’t mentally go there, but it’s looming. It’s the future and I have to be ready for it.

This post was one of the hardest things I have ever had to write. I have gone back and forth about sharing it dozens of times. Miscarriages and infertility…..no problem. Sienna and how amazing she is…..get me a computer so I can write. This, well….this stuff is hard. Even 25 years later, it’s hard. Stuff like this leaves scars. It doesn’t go away. For me, the aftermath of what happened was harder than what actually happened. Let’s support all women coming forward, baring their souls. It takes courage to put yourself out there. I applaud all women coming forward in this movement. You are leading the way for my daughters. Thank you. I’d be a fraud if I didn’t share my story too. #metoo

 

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Create space where there was none.

It’s 2018. I’m ready to implement some changes into my life and our routine. Our overwhelming and demanding schedule has me feeling drained. Something has to change. I am running on empty. I know I am not the best version of myself. So, I started reflecting on what changes I could make to give myself more energy, make my body feel better physically, and accomplish everything on our daily task list. What New Year’s resolution could help with that? I knew that I didn’t want to give anything up on our schedule. Sienna is finally starting to make some significant changes in her physical capabilities and I attribute that to our additional PT sessions at the Children’s Institute. I started to think about how great I feel when I am making time for yoga. I need to make that a priority. I always walk into a yoga class with one goal in mind; to create space where there was none. I repeat this mantra to myself throughout every class. It’s easy to get in your head about petty nonsense, even during yoga. I catch myself clenching muscles, looking in the mirror, criticizing myself. How do I look doing this pose? My inner dialogue goes like this, “I look awful. I’ve let myself go this year. STOP!! Create space where there was none. That’s all you need to do.” Then, I refocus. My mind does wonder, but I always come back to this mantra. It always works for me. It grounds me and gives me a safe, reasonable goal and it forces me to take things as they come with one simple strategy. I started thinking about how I could take this same simple goal and implement it not only physically to my body, but figuratively in my life.

So, what are some areas in my life where I could apply this goal? Well, my blog, for instance…this is my own space to create what I want. I can share my perspective, my family’s experience with a kid with Down syndrome, my life as a stay at home Mom, my experiences and innermost thoughts. I’ve let it slide these past few months and I tried to dig deep and think about why that was. No excuses. Believe me, I’ve got the excuses. It’s easy to make them especially when your life is consumed. But pushing that to the side for a minute, why haven’t I been writing? I enjoy it and it’s been therapeutic. Why had I stopped writing, aside from the I’ve been busy BS? It’s the same reason I lose sight of that mantra during a yoga class. Insecurity. Self involvement. Fear. I’d be lying if I said everyone in my life was supportive about this blog I’ve created. Some people think I share too much and they let me know it. People have made comments about me being too into this Ds thing we live with. For the record, I’ll advocate and share to my heart’s content and if you don’t like it, don’t read it. Some people have just been completely silent about the blog, and that got in my head as well, because like I said I am self involved. That’s not to say I have not had positive feedback as well, but I focus on the negative because that’s what I do. So, the motivation to write dwindled as the inner dialogue got more and more judgmental. I had thought about sitting down and writing my own metoo experience for the blog, but I caught myself asking friends and family if it was going too far, sharing too much. So, I’m making a vow right here and now. No filter. No limits. I’m keeping it simple. I’m going to create space where there was none. I can’t promise I’ll do it every week, but I’m going to try. If I catch myself questioning if I’m sharing too much, too little, how I sound, I’m stopping those thoughts and telling myself to stick to the mantra. Create space where there was none. 

Where else can I apply this goal? Time. Have I mentioned we don’t have much of it? Our days pretty much go like this:

6-7 am The kids wake me up
7 am – 8:45 am Cook the girls their breakfasts. Dress them and get us out the door.
9 – 11 am Take Haley to school. Guzzle caffeine. Get Sienna to whatever therapy we have that day.
11 – 11:45 Get Sienna lunch and get her down for a nap. Go pick up Haley from school.
12-2 pm Make Haley lunch. Do a load of laundry. Shovel crumbs on the counter down my throat. Finally, take a shower.
2 – 4 pm Sienna is up. Feed her and Haley a snack. Start to clean up the crazy house. Figure out dinner and start to make it.

The rest of the day depends on whether or not Jason is traveling. Most of the time, we have errands to run too…food shopping, target runs, Haley’s gymnastics and art classes, doctor’s appointments. But I know I’m not the only one with a crazy schedule. I have to find a way to create space where there was none. I have to force myself to find it. Every day, I’m going to tell myself to create 30 minutes for myself. I have to manage our time more wisely. Do you know what would help with that?

Organization. 2018 is going to be the year I purge. No more holding onto junk. I’m taking the 2018 30 day #declutterlikeamother challenge. This week we have been focusing on bathrooms and closets. You should see all the space I’ve created by tossing old makeup and kids’ bath toys. It feels good. If I have this house more organized, I will get things done more quickly and it will ultimately help with that time dilemma I am dealing with.

What else? Motherhood. Lately, I’ve become so consumed with checklists and Sienna’s therapy goals. I need to take a page from Haley’s book. I’m dedicating more time to playing with the girls. I want to be silly with them. The dishes can wait. The laundry will be there when we’re done. I’m not just finding a craft to do with them to kill time. I’m pretending to be a giant that’s chasing them in the woods. I’m taking the cushions off the couch and pretending the carpet is hot lava that we can’t touch. I’m reading books to them every day, not just at bed time. I’m creating memories, space where there was none.

You get the idea. I don’t know if this mantra of mine will work, but I’m happy to start the year out this way. My big takeaway is that I cannot let fear, insecurity, and self involvement take over. I have to be okay with owning and enjoying this space I’m creating. Thanks for reading.

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The Evolution of Happiness

If you would have asked me one year ago if I thought I would be celebrating Down syndrome Awareness Month with the ferocity and appreciation I have today, the answer would have been, “Hell no.” It’s amazing what can happen in a year. So much has changed, especially myself. For any mothers out there still struggling with the diagnosis, hang in there. Be patient and kind to yourself during your journey. I don’t know what the future holds, but I have learned to celebrate each day. Kids grow up way too fast. During Sienna’s first year of life, I chose to live in each moment. We conquered one challenge at a time and that way of thinking has translated into a higher quality of life for all of us. It’s a transition for which I am grateful.

As most of you know, last week I spoke with a group of students studying to become genetic counselors. One of the questions I was asked during their class was, “How have your dreams for your child’s future changed since her diagnosis?” It’s an insightful question and it forced me to dig deep. What dreams do I have for both of my kids and their future?

I thought about how I was feeling while I was pregnant with Sienna. It’s different with your second child. You already are aware of the sense of magic that comes with motherhood. You’re more selfless. You know the sacrifices you are going to have to make, and you’re prepared for them. Before Haley was born, I had dreams about her future. After she arrived, those dreams changed. They’re evolving every day based on what she wants out of life. The truth is her dreams belong to her, not me. All I want for her is happiness in life. I want her to do whatever it is that will bring her that. Whether she wants to be an astronaut, a makeup artist, a mom, an ice cream shop owner, or all of the above like she does now, I am going to give her the tools she needs in order to achieve those dreams.

Is that different for Sienna? I thought and thought on it, and I kept coming back to the same place. It is no different. Her dreams for the future will grow and change with each passing year and I will let her know that she is capable of doing anything. I will give her the tools to accomplish her dreams and I will stand on the sideline cheering her on, advocating for her all along the way. I will fight for both of my girls every day.

If you would have asked me 10 years ago if this is the direction I saw my life going, I would have laughed in your face. Would I be living in Pittsburgh? Ha, fat chance. Philadelphia is the best city in the world. Why would I leave here? Would I have quit my successful career in order to stay home and raise children? Ummmm, have we met before? I love working and I would never give that up. Would I be raising two girls, one with special needs? I can’t do that. I give people so much credit who can, but that’s not me. Also, I am going to be a boy mom. I’m a sports addict. I hate princesses. Well, here I am living this life we got (pun intended) and traveling this unexpected journey and guess what? I am happy. I am blessed. Being a mom to both of these girls enriches my life beyond my wildest dreams. One of my dreams in high school was to become a writer, and here I am pursuing a passion I had long displaced. My girls led me to this place and I am grateful to them for that.

Thank you for reading all of my posts on Facebook and Instagram this past month as we celebrated Down syndrome Awareness month. As we transition into November, I will be getting back to weekly blogging, still sharing stories about this life we got.

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My Rockin Mom Family

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.

https://www.youtube.com/watch?v=GmW-84Qh9I0

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.

https://mardrasikora.com/grows/

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.

Our Rockin Mom bracelets

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.

Mardra Sikora and me.
The girls from the writing break out session
“Writing is self care. It’s not another reason for self guilt.” Mardra is very wise.

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.

These are the girls that are in my birth group.
A mom from my birth group. I was so happy to meet her in person.
Beth and me

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.

More pictures from the weekend…

Heart Moms

The best homecoming!
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