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Guest Post: Why I Celebrate World Down Syndrome Day

Today I have the honor of sharing Hustle & Heart blog with an amazing momma.  She runs a local networking organization, Richmond Housewives and is the mother to 3 beautiful children, twin boys and Charlotte, who has down syndrome.  In honor of World Down Syndrome Day she is sharing her story with us.  Lyla Taylor Boutique will also be donating 15% of all online sales today to Next Move Program, a local organization that provides jobs to young adults with disabilities.  

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Four years ago, I had no idea that World Down Syndrome Day existed. Shortly after, I would enter the Down Syndrome community kicking and screaming (actually just hysterically crying) with one phone call. I knew absolutely NOTHING about Down Syndrome and felt wholly unprepared to be a “special needs parent”. In a surprising turn of events, which I have learned that life loves to hand out, it is now one of my greatest joys to be my daughter’s advocate and educate others on this very important part of our lives. Today my family and I very happily celebrate World Down Syndrome Day to raise awareness for the rights, inclusion, and wellbeing of people who have Down Syndrome. With that being said, I wanted to take the opportunity to tell you exactly what Down Syndrome is to me.

It’s finding out at 21 weeks that your life will never be the same again and feeling completely unprepared for it.

It’s praying every day for the rest of your pregnancy that you will love her as much as your love your two “perfect” children….and feeling so ashamed about it. (Spoiler alert- my other kids are far from perfect and loving her has never been hard)

It’s seeing her for the first time and seeing those beautiful almond eyes and knowing in that moment that it really is true…and realizing that it does not matter anymore. You are so in love with this child not because of or in spite of her chromosome count.

 

It’s trying to balance life with SO many appointments and therapy sessions.

It’s crying happy tears while you watch her sleep and thanking God you were given such a gift.

It’s seeing another child on the street with those same characteristics that your daughter has and instantly loving them….and following them around Target very covertly until you get the chance to talk to their parents in a very non stalker way.

It’s admiring the hell out of the fight and determination that you see in her. It’s knowing that while things are much harder for her, she is up to the challenge.

It’s meeting new friends in this world that feels very new to you and them feeling like family. You are in this special tribe together and understand one another in a way that others just will not and cannot.

It’s finding out that she has hearing loss and will need hearing aids about six decades too soon and crying by yourself in your car. Then you strategize on how to make them cute.

It’s watching others light up around her. As much as you want to deny any difference, you have to concede that there is something truly special about her.

It’s always feeling like you should be doing more, even though you often feel exhausted.

It’s finally letting go of those stinking milestones and just trusting that together you are going to figure this thing out. You aren’t on anyone’s timeline anymore


While Down Syndrome is just one puzzle piece of Charlotte, I can’t deny that it’s a large one- and it’s one that I wouldn’t change even if I could. On World Down Syndrome Day, let us celebrate all things that Down Syndrome is: sometimes challenging, funny, awe inspiring, and always beautiful.


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