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ETMB’s Mom of the Month: World Down Syndrome Day | East Texas Moms Blog

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East Texas Moms Blog is taking some time in 2018 to shine the spotlight on some moms in our East Texas community. We hope these stories continue to shine a light so bright, that it brings us together and let’s us know we are not alone in this journey!

 

TODAY is World Down Syndrome Day!! We caught up with a very special mom in East Texas to have her share why this day is extra special to her and her family and friends. 

Meet Ashlee. Read her story.

On the morning of December 8, 2013 after a fast and furious labor and barely making it to the hospital in time, we welcomed our sweet 7 pound 7 ounce baby girl into the world!! The moments that followed are ones I have relived countless times in the days, months, and years that have followed. My first thought was, “Is everything ok? Is she ok?”

And after a brief check and an all clear, she was placed in my arms and I was overcome with emotion to finally get to meet my sweet girl! Yet looking back now, deep down I think I knew something was different, unexpected even in that moment, but I kept telling myself, surely not. My husband is in the medical field and started asking a couple of questions to the nurse (the doctor didn’t make it in time) to which she gave vague answers and said the doctor would be able to answer them for us. Once again, I had this thought that something was off, but I kept holding my girl, desperately wanting her to be ok and welcomed into this world with nothing but joy. The pediatrician arrived shortly and after a brief exam, shared with us the words we had never anticipated hearing,

“Because of several physical markers such as low muscle tone, low set ears, a space between her first two toes, and a Simian crease across her palm, I believe your daughter possibly has Down syndrome. We will want to do genetic testing to confirm.”

Honestly the moments after are still somewhat of a blur. I remember feeling stunned, trying to focus on what the doctor was saying, and all the while thinking, “I still love you!” I think part of me was terrified of my response in the moment and that it would be anything I would regret later on. In the midst of listening and trying to process and absorb what the doctor said about possible heart problems, lung issues, hearing loss, or speech delay, I heard her mention that some baby’s with Down’s struggle with latching and breastfeeding due to the low muscle tone. Somehow I zeroed in on this information, looked down at my little Miss and decided that I didn’t know what would come next, but she and I were in it together and we were going to figure out this nursing thing!!! Looking back I realize it was the one tangible thing I knew I could do to help her, to work towards, and focus on in the midst of so much uncertainty. It was my survival mode.  There were some difficulties in the beginning, but I am so thankful we persevered because we did it!

Going into labor and delivery we did not have a name for our girl and to be honest it was hard in those first 24 hours to make that decision. Grappling with an unexpected diagnosis and what it could mean for our daughter and our future was daunting, then adding the weight of naming her made it overwhelming. Yet in the midst of all of this, we found peace and chose the name Brighton because we wanted to speak life and light over her and felt like she was going to be a bright light in this world.

Little did we know how well she would live up to her name!

In the days and weeks ahead, we had appointments and follow ups. We had her heart and lungs checked, her eyes checked, her hearing checked, and kept an eye on all of her major systems to make sure things were going ok. I am still amazed today that we went through each and every one of those appointments and came out the other side with no major problems. That is not everyone’s story and I do not take that for granted. At ten weeks, our little Miss Brighton, started physical therapy once a week and a second therapy that was a precursor to occupational therapy. She showed us from early on that she could be a determined little one and worked so hard even as a baby! Did I ever dream of having a stranger come into my home and have therapy twice a week with my baby? Absolutely not! But to this day, I am thankful for those women and how they helped us learn what we could do to help our Brighton and expect great things from her and not just accept progress or behaviors based on a diagnosis. 

That first year was hard.

As much as we loved Brighton and took such delight in her, it was still a challenge to process the shift in our life and how it seemed our whole family dynamic would be different. Therapies and doctor appointments became the new normal for us. I was very aware of her diagnosis and wondered if everyone else was too. There was even a time I remember walking through the grocery store and being stopped by people wanting to say hi and to see the new baby, all the while wondering “Do they know?” or “Do they only say she is cute because they feel sorry for me?” The hardest part was the time I met a young man and his mom, I started asking him questions and his mom quickly said, “Oh he doesn’t speak!” It was all I could do not to break down in tears right there in the library. Would Brighton be able to speak? Would we have conversations? Will I know her heart and what she loves and dislikes? 

Growing up I had only known one person with Down syndrome and my husband had not known anyone. His only understanding was from the small amount he knew from school and those were medical generalizations that made it seem that all people with Down’s were the same. The mental struggle for me to process the stereotypes was very difficult. At the same time, I didn’t want to hear about the young woman who had a job or the man who opened a restaurant. Well meaning attempts to be encouraging at the prospect of my daughter’s future left me frustrated and unwilling to listen. She is just a baby!!! Let me enjoy my baby and not think about her at 25! We fought fiercely to create our new normal that first year and well into the second. We talked about Down syndrome a lot. I worried about the day to day, while he worried about the future and what that would look like.  Fast forward three years down the road and we rarely have a conversation about Down syndrome, it’s more of an aside and not a focus. It is a part of our daughter that is there and even something we celebrate, but not something that is dwelt upon on a daily basis. It’s not overwhelming like it used to be and doesn’t feel consuming.

Yes, we still have challenges and areas we have to work though.

We work daily to help Brighton develop the correct technique and muscles for speech while also using the invaluable gift of American Sign Language to bridge the gap and further our communication. Another aspect it that while her older brother loves her fiercely, it is a process of learning why Brighton may need speech therapy and he doesn’t or helping him understand why it may take a little longer for her to recover from being sick and therefore she may get to miss school when he doesn’t!

At the same time, I am not a huge fan of the title “special needs” because while Brighton does have some unique struggles that her siblings may not have, each one of my children are special, each one has their own set of struggles that the other doesn’t, and each one is special to me in their personalities and gifts! 

Having a child with a diagnosis can be very difficult and often isolating, but in my brief seven years of being a parent, I have realized something, being a parent of any child can be very difficult and often isolating. So with that in mind, I strive to do the best that I can for each of my children, for they each have strengths and weaknesses, joys and challenges, that I learn from daily, regardless of how many chromosomes they may have! 

If someone were to ask me what I want others to know about Down syndrome I would say this…

Brighton is our daughter first and having Down syndrome is just one aspect of who she is. It does affect parts of her life and there can be health and developmental struggles that go along with it, but it does not define her and it certainly does not confine her! She is more alike her peers than different. From church, to school, to her friends at Chick-Fil-A, she truly does bring light wherever she goes, but she is not a perfect angel! She gets upset, fights with her brother, and has quite the stubborn streak. She is also four and while some things take her a little longer and her stature may be smaller, she challenges for independence and tests boundaries just like most four year olds! Brighton can be incredibly silly and make us all laugh, but she is also compassionate and acutely aware of when someone is hurt or upset. She is my helper, loves to clean, sing, have dance parties, and asks weekly to go swimming! 

Raising a child with Down syndrome is nothing I would have ever planned for, but am humbly thankful for the gift of having it be a part of our lives. Because our story has taken this turn, my eyes have been opened to an amazing group of people who have so much to offer and yet who have to fight either as self advocates, or through their parents, to establish their worth to a world that often deems them as unworthy. There are strides being made in so many areas and social media is playing such a huge role in this! There are organizations such as Ruby’s Rainbow that is a college scholarship program for those with Down syndrome, Changing the Face of Beauty that advocates for diversified representations of disabilities within advertising, or an adoption agency that seeks to find homes for those who would otherwise spend their lives in institutions all because the were born with 3 copies of the 21st chromosome. The amazing thing is, that these life changing organizations were all founded by mom’s of children who have Down syndrome. Moms who are out their changing the world everyday, as a result of having that extra chromosome in their lives! I can imagine that if you were to ask any one of them what makes them special or gifted to do this, they would agree- it’s not about them and anything special they can do, but rather showing the world our kids are worth it! 

A little over four years ago if someone would have asked me about the significance of March 21st, I would have come up blank because I truly had no idea. Yet now I find myself a part of a community I never imagined we as a family would be a part of and yet I am incredibly thankful for how we have changed, I am changed, and the journey that is still to come! So know that today, around the world, if you see someone wearing crazy or mismatched socks, t-shirts declaring “More alike than Different” or that we are “The Lucky Few,”  know that we do this because we celebrate these wonderful people in our lives, their intrinsic value, and how our world would not be the same without them. 

Happy World Down Syndrome Day!!


 

Ashlee

Ashlee is Momma to Henry(7), Brighton(4), and Emmeline(11 months). Prior to becoming a stay at home mom she was a dance teacher and choreographer for the Studio on Main in Lindale and the TJC Academy of Dance in Tyler. While dancing and teaching is still a passion and she looks forward to doing that again some day, she directs her creative energies into creating a home for her family, keeping up with her three littles, and giving a go at running. To see more about Brighton and living life with Down syndrome follow along on Instagram @livingon_thebright_side.

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