It’s Down Syndrome Awareness Month

Oh heyyyyy there! Happy, happy October! I think this is a favorite month for a lot of people because it’s when the temperatures finally drop (at least in TX) and it’s pumpkin spice everything! And I ain’t mad ’bout it.

This month is well-known for a few causes, including, but not limited to: Breast Cancer, Domestic Violence, Down Syndrome, and Depression Education. And while all of these are important causes, there is one that hits close to home – Down Syndrome. It is an honor to share her story on the blog today. Her name is Sonia and we met through my little sister many years ago. Since they have been best friends since middle school, it was easy to see her as my little sister too! She is beautiful inside and out, focused, intelligent, a go-getter, strong, and independent. Her story is more than captivating; it is inspiring, motivating, and courageous.

Down Syndrome Awareness Month is an opportunity to educate people. Without getting into too many details (because more deets are covered below), here are a few facts from the National Down Syndrome Society (NDSS) website:

  • Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down Syndrome.
  • Incidence of births of children with Down Syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down Syndrome are born to women under 35 years of age.
  • People with Down Syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society.

This year, I am raising awareness by sharing Sonia’s story and by participating in the upcoming Dallas Buddy Walk. We are thrilled to be a part of “Grayson’s Gladiators” team! Grayson is Sonia’s two year old boy who is conquering every single day by achieving things he was once doubted to complete. The Buddy Walk is the most widely recognized public awareness event for the Down Syndrome community. It is held each year in hopes of raising awareness, promoting inclusion, and raising funds for education, research, and advocacy programs.

“It’s not about celebrating disabilities, it’s about celebrating abilities.” – NDSS Goodwill Ambassador, Chris Burke

I think the best way to introduce Sonia’s story is to first share exactly what I wrote to her after she agreed to answer a series of what I thought were commonly asked questions. I began with listing out the things I wanted to cast light on throughout this blog post:

  1. Raise Down Syndrome awareness
  2. What’s it like raising a child with Down Syndrome
  3. Life is what you make it

Sonia,

Thank you for allowing me to dedicate a blog post to you and Grayson. As you are aware, I’ve created a FB page, From College to Profresh, and a new blog page, From College to Profresh, with the intention of forming an online community between young women transitioning from college to the so-called “real world”. And even though you have yet to enter the workforce, I think your story will have a positive impact on other young women facing a similar walk in life.

Becoming a mom during your last year in college was probably daunting – but please feel free to correct me on that. I put myself in your shoes and I know I would have freaked out a little bit! I know you handled it the best way you knew how, but in the end, only you know what you actually went through – emotionally, physically, and mentally.

I don’t know if you hear this often enough, but lady, you are quite the inspiration! You have literally put aside all of your desires, passions, and goals, to dedicate the very best to Grayson. He is on the path to success by breaking stereotypes and barriers all due to an amazing support system: you, Johnny, family, friends, mentors, teachers, and therapists. He is surrounded by a team of rock stars who believe in him every single day.

The below questions dive a little deeper on your motherhood experience so far. I hope your story gives courage to other young women going through an unexpected or unplanned circumstance, such as the calling of motherhood. The truth is, it’s not the end of the world, and there’s always an opportunity to learn. It may seem easy to lose sight of our goals because we tend to get stuck on the “what ifs” or “could have beens”. And we often forget to live in the now. I am the type of person who wholeheartedly believes God wants us to become our highest-self, He wants us to conquer our fears, He wants us to reach for the “impossible”. And we hold the power to do all of those things.

I look forward to sharing your story.

– Sonia

Her responses brought many emotions and tears.

  1. How would you first describe your story?
    • My first immediate thought when I found out I was pregnant was school. I had one year left at the University of North Texas (UNT). School was always my main priority in life. I felt like I let my entire family down since I was a first-generation college student. My little brother looked up to me as well and I always tried to be a good example for him. I had just turned 21 and Johnny was headed towards 22. Believe it or not, I honestly had no idea I was pregnant until one day while getting ready for school I began to feel extremely dizzy. I told Johnny I had a gut feeling that I might be pregnant. His immediate response was, “I highly doubt you’re pregnant but let’s go get a pregnancy test.” Once I took the pregnancy test I was nervous and anxious to know the results. Those five minutes of waiting felt like FOREVER. After what felt like eternity, the test came back positive…my heart stopped. I didn’t cry, I wasn’t angry, I just smiled at the results and held my tummy tight. In my heart, I knew God had this plan for me long before I did. Afterwards, I told Johnny. Johnny didn’t take it well. He cried, he screamed, he was in disbelief. He wasn’t in a great position life-wise and he was already going through a lot. The next people I told was my parents. I’ve always had a great connection with my mom, and in the end, I knew both parents would support me no matter what. If I hadn’t had their support, I don’t know what would’ve happened but I’m extremely thankful I did. I ended up graduating from UNT with my bachelor’s degree in Communication and minor in Spanish. It was difficult to finish school but I did it for my baby boy. My goal was to finish school before my due date, which was set for October 20th, 2016. Mind you, I was set to graduate in December 2016. The only way to graduate before my due date was to take 15 hours of summer classes. I didn’t want to be another statistic of a pregnant college drop-out, so I went to my advisor and looked at her straight in the eye and said, “I want to graduate this summer. Sign me up to all 15 hours of classes.” She probably thought I was crazy but I was dead set on graduating no matter what. Nonetheless, I passed all my summer classes and graduated. It was a relief to be done with school and finally be able to enjoy my pregnancy.
  2. Before you held Grayson in your arms, did you ever feel having a baby would impede your career/life goals? If yes, how did you overcome those feelings?
    • My plan before getting pregnant with Grayson was to graduate, move to Houston to work in PR, and enjoy life with my best friends. Not once did I think, “Have a baby by 21”. Of course, things changed right away once I found out I was pregnant. My dreams and goals (other than graduating) had to be put on pause. I actually only planned to be a stay-at-home mom for six months and then pursue my career…not knowing God had other plans for me, yet again. Another little surprise came along with Grayson. (I’ll answer this question more in depth in question #3.)
  3. When or how did you come to find out Grayson was diagnosed with Down Syndrome?
    • I found out Grayson was diagnosed with Down Syndrome at birth. I had a screening test and an amniocentesis that checks for specific things such as Down Syndrome. Everything came back normal. It completely took us by surprise. I knew right away Grayson had Down Syndrome. My momma gut and heart knew something was different about him. I saw it in his eyes, his ears, his toes, and his nose. The almond shaped eyes, the button nose, the low ears, sandal toe gap, and his tongue thrust. IMG_5838The first person I confessed my thoughts to was my sister-in-law. I looked at her and said, “He has Down Syndrome, right? It’s not just me that sees it.” She responded, “No, don’t worry, He’s fine.” I didn’t believe her. I had many thoughts racing through my mind. You know like in a movie when everything just slows down and all you can hear are your thoughts and nothing else? That’s exactly how I felt. I couldn’t hear Grayson crying in the background, I didn’t hear the doctor talking to me, I didn’t hear anything, but my thoughts. The doctor took Grayson away for the normal routine check-up and I was stuck on my bed…with my thoughts. I asked to speak with the pediatric doctor to confirm everything but the doctor never came. I didn’t sleep the first night in the hospital. I was googling, “How can you tell if a baby has Down Syndrome”. A list of things popped up and I’m pretty sure I read them all. Every thought I had about Grayson was slowly confirmed by the list I found online. Almond shaped eyes? Yes. Sandal toe gap? Yes. Low ears? Yep. I was holding on to the little hope I had to answer ‘no’, but by the time I finished, all the questions were checked ‘yes’. Finally, it was the next day, and I was hoping it was all a dream. It wasn’t. I saw my baby boy and his sweet almond shaped eyes. I remember holding him tight and just taking it all in, and while I was holding him, my OBGYN walks in. He says, “I hear y’all have some concerns? Let me take a look at him.” Dr. Gordon sits next to me in bed while holding Grayson and examining him. My heart was racing, and for the first time, I had zero thoughts. Dr. Gordon then says calmly while still examining Grayson, “It looks like he has trisomy 21 by the characteristics. The low ears, almond shaped eyes, etc.” I waited until he walked away to burst into tears for the first time. All my thoughts had been confirmed right then and there. Our entire world flipped upside down at that instant and my heart completely dropped. I was torn to pieces. My sweet boy that I had carried for almost nine months was diagnosed with Down Syndrome. We cried, we yelled, and we even asked God ‘why…why our family, why our baby boy’ but then things slowly began to change. I reached out for help because our son needed strong parents that understood Down Syndrome. As we began to understand Down Syndrome, our worries slowly began to fade away. Grayson will be able to walk. Grayson will be able to play sports. Grayson will be able to speak. Grayson will be able to go to a university. Grayson is capable of reaching any goal. Will he need a little more help than others? Yes. Help does not mean he is not capable. All of Grayson’s future endeavors are reachable. I see hope, beauty, and so much love in him. He is my strength to keep going and continue to fight. There is nothing down about Down Syndrome. My baby boy is already breaking down stereotypes one day at a time and he will continue to do so. What the world may view as broken or damaged, Grayson has taught me what true beauty really is. The probability is 1 in 2,000 at the age of 21….I’d have to say God really blessed us with a sweet angel and we wouldn’t trade him for the world.
  4. What is the most commonly asked question after people hear your story?
    • The most common question we get is ‘How?’ How did Grayson come to have an extra chromosome. What people do not know is there are three types of Down Syndrome. Grayson has Trisomy 21 (T 21), which is the most common. There is also mosaic and translocation. T 21 is like rolling a dice and landing on a 1. It just happens. 1 out of 2,000 was our chance to have a child with Down Syndrome and we for sure hit the jackpot.
  5. What has been the most challenging thing about motherhood (not related to raising Grayson)?
    • I’d have to say the most challenging part about motherhood has been postpartum depression (PPD). I was depressed for the first 2-3 months to the point where I would cry every day and not eat. I think I hit PPD because I’m a planner. I plan everything to the T and when things go south I tend to freak out. I was a young mom, fresh out of school, and juggling doctor appointments and therapies for Grayson. I was overwhelmed and felt alone. What helped me get out of PPD was speaking with other moms who experienced the same season I was in. Through connecting with others, prayers, a lot of faith, and self-care, I was able to get through that season.
  6. What has been the most challenging thing about motherhood (related to raising Grayson)?
    • Society. The ignorance some people have is baffling. Doctors telling you your son won’t be able to reach certain milestones because of xyz or family comparing Grayson to other typical children. I have learned to use ignorance as fuel. Fuel to keep going and proving that Grayson is capable of doing anything.
  7. In your experience, what is the number one myth about children with Down Syndrome?
    • The number one myth would have to be their capability. Society has held this stigma how children and adults with Down Syndrome aren’t capable to do everything in life. They can drive. They can get married. They can even get tattoos (*GASP*). They are just like any other human being.
  8. How do you raise Down Syndrome awareness? What do you want people to know about it?
    • Grayson and I have spoken at Texas Woman’s University along with Grayson’s Physical Therapist and my Mentor Mom (who also has a child with Down Syndrome). We shared our personal stories and explained what Down Syndrome really is. I want people to know that Down Syndrome is not scary. It is an added plus to society and society shouldn’t limit them. They are more than capable to do anything they set their minds to.
  9. How has motherhood changed your life?
    • Because of motherhood, I am the person I have always wanted to be. Grayson has changed our lives for the better. It has made me reflect on who I really am and on things I needed to change. Because of Grayson, I know patience. Because of Grayson, I know perseverance. Because of Grayson, I am perfect in my imperfections. Because of those reasons and so much more, he is my hero. He has taught me more about myself than I have in my lifetime. I will forever thank him for that.
  10. What ways do you recommend on making new and impactful friends? I think like many of us, our circle gets smaller and smaller – can you agree this has happened to you too?
    • I have made new friends by bonding through commonalities such as Down Syndrome. I relate to people that have endeavored the same season I have. Losing friends is a bittersweet feeling. It’s bitter because they once held a special place in the season you were once in and its sweet because they have made you realize so much more to life. My circle is more of square. I have always trusted a few people in my life and they have always been my rocks in different seasons. That’s how I know when a friendship is forever. They do not run when I hit a different season in life, nonetheless, they are right there cheering me on.
  11. If you could go back to Sonia during her last year in college, is there anything you would tell her?
    • Dear Sonia, stop planning your future, and let God plan it for you.
  12. What is Grayson’s latest milestones?
    • Grayson is perfecting his walking and running day by day. He’s learning new signs every week (we’re at 8 signs now, yay!). We’re currently waiting to hear back from an amazing private school, Kinder Frogs. It’s an all-inclusive school that meets Grayson’s needs and we’re very excited for him to begin school within the next year. Once Grayson starts school, momma bear will be ready to press play on all her career goals. My hope is to become a school advisor at a university. I want to be able to help students that are going through the same season I endeavored during my last year at UNT. I want them to know they can still continue their education no matter the circumstance. There is always hope. Processed with VSCO with t1 preset

If this isn’t a story that represents faith, perseverance, persistence, and determination, I don’t know what is! Grayson is blessed with an amazing support system. Through this story, I took away a huge lesson – I am perfect with my own imperfections. Therefore, it is important to accept and love me as I am. Of course, this doesn’t mean to not improve in the areas I can definitely change for the better. After all, as I stated above, I wholeheartedly believe God wants us to become our highest-self. And we hold all the power to become that Being.

If for some reason you are in the Dallas area on Sunday, November 4th, please feel free to join Grayson’s Gladiator’s team! It’ll be a grand time! If you are unable to attend, but would like to contribute to this cause, you can do so by clicking here. Thank you in advance for your support!

Hope you took away something positive from today’s post. You can keep up with Grayson by following @graysonsgoldenadventure – he keeps his momma on his toes and is the most precious little boy!

Love always,

Mrs. Profresh

Ps. Also, if you are a regular reader of mrsprofresh.com, thank YOU. I did not expect such positive feedback on the self-care tips blog post! You have no idea what it means to me to know you enjoy reading what I share. On that note, no matter where my blog takes me, you can bet I will always shine light on matters (or causes) I care about most – especially if that means supporting my circle of love.

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