Today is World Down Syndrome Day 2020!

Today is World Down Syndrome Day! We celebrate on March 21st because Down syndrome occurs when there are 3 of the 21st chromosome, which happens at conception. So for World Down Syndrome Day this year I will give an update on Gigi. In the past I felt compelled to spread awareness about Ds but lately I’ve been posting less and less about her and Down syndrome in general because these days we are just living our normal lives.

Gigi is, in many ways, your typical 5 year old. She goes to school in an inclusive setting with mostly typical children and a few who have special needs. She takes the bus home; the ride is about 30 minutes. She’s getting ready to read! She often speaks in full sentences and is completely aware of everything you say, so never assume that you can speak in front of her and that she won’t be listening and absorbing. Yesterday Carina was complaining to Lia that she would spend her birthday cooped up in the house. Gigi leans over, hugs her, and says, “Don’t worry, Carina, I won’t let you down”. I can’t wait to see what her plan is to not let her down today, but in all likelihood she forgot about that promise. This morning at breakfast Lia wanted to lick the whipped cream bowl but Gigi said, “It’s Carina’s birthday”. So now you know who’s boss.

Gigi can dress and undress herself. In fact as I was writing this I told her to go get dressed. Before I knew it she was back with her shirt (backwards), socks and pants on.

However, she didn’t change her diaper (I didn’t expect her to). Yes, she’s still in diapers, so we definitely have our challenges with her. She wants one of her parents to sleep with her at night too. She has times during the day where she moans and drools for stimulation which can really wear on your last nerve.

She has the sweetest disposition. Always complimentary, telling you that she likes your hair or shirt or your head. Gigi often uses please and thank you. But don’t get me wrong, there are times when she doesn’t want to listen. She doesn’t understand time out or get threatened at all when I count to 3.

Gigi loves babies, yoga, and music. She likes to wear dresses and jewelry. She thinks poop is hilarious and will change the words to a song just to add the word poop to it. She loves school and schoolwork but is terrible at holding a pencil and can’t write a single letter. She really can only draw a circle. She’s wobbly on stairs but jumps and climbs pretty well. She doesn’t care for vegetables and fruit but loves cake. Gigi hates having her hair combed. She gets overwhelmed by large groups of people.

Health wise she sees her specialists less. She was officially released from cardiology over the summer because the holes in her heart have closed. I’m afraid to say (because I don’t want to break the streak) that she’s been handling colds like a champ this year, but her history has lead her to pneumonias and hospitalizations with your everyday viruses so we’re a bit panicky about COVID-19 but are used to living extremely carefully from October thru March because the flu terrifies us always.

Some of what I’ve mentioned above may be common for kids with Down syndrome and some of it may be particular to Gigi, but overall each child with Ds is unique with their own strengths and weaknesses and not much different from any other kid.

One thought on “Today is World Down Syndrome Day 2020!

  1. That was a wonderful piece.. thank you for sharing. My daughter is 24 years old and how the time has gone by so fast.. Every day she will make you proud in so many ways… God bless you all!


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