World Down Syndrome Day 

Today is 3-21, World Down Syndrome Day. A day in which the entire world gets together to celebrate the magic of an extra chromosome. Since having Ellie I have found a vast online community of families who love someone with Down Syndrome and today everyone has been telling stories and spreading awareness and I love it, a true community. And the feedback is amazing, times are changing, we are all seeing the beauty of our differences, it’s what makes us human, it’s the laugh lines that connect us all and enrich who we are. Last year I typed out 21 things about Ellie for WDSD and I’m going to do the same thing this year. 

1. Ellie chose today to say MaMa for the first time which I think was her way to make this day special for all of us. And as I am hearing more words and babbles, her voice has the softest, sweetest sound.

2. Ellie is a physical therapy poem. That phrase is quoted by our physical therapist. Ellie climbs stairs, walks everywhere, and rarely sits still. She is in the typical range for all children (!!!) with her physical abilities. 

3. Ellie has a contagious laugh. If you look at her and start laughing, she will too, and then everyone in the room starts laughing and it gets pretty crazy.

4. Guidelines recommend regular hearing tests for children with DS. Ellie has had hearing tests every 3 months since she was born. She passed her infant hearing test but all the others have been inconclusive. The nature of the test is not for babies. We know she can hear but don’t know yet if her small ear canals or any fluid are inhibiting her hearing. 

5. Ellie loves Veggie Sticks and Fruit Snacks with a serious passion. 

6. On the food front Ellie is self feeding. I provide some purées to make sure she gets all her nutrients but she would prefer finger food. In fact when I give her a cup of milk she holds it like a teddy bear so I won’t steal it back. 

7. Ellie loves animals, dogs in particular. 

8. Ellie has a wide array of doctors and therapists watching her. A cardiologist, a peditrician, an ENT, an eye dr, a family doctor, an OT, ST, PT, and a developmental specialist. These doctors do not invade our lives, they are our helpful guardians making sure I can play and love Ellie without constantly worrying if she’s okay. 

9. Ellie can play with toys for hours but would much prefer to play in the dog’s water dish or with pots and pans.

10. Ellie can utilize a lot of gestures to tell me what’s going on. She knows several body parts, can play along with songs, claps, waves goodbye, points, gives kisses, mimics sounds.

11. Ellie could dance all day and especially loves jamming in the car.

12. Ellie will be in typical classes for as long as possible, we will fight as hard as we can for this one. Inclusion is, in my opinion, what is best for all students.

13. Ellie has 6 teeth including 1 molar. 

14. Ellie loves her sister so much, she will follow her wherever she goes. 

15. Ellie understands so much more than she expresses. She can identify cards with pictures on them. Specialists are learning the best ways to teach people with DS, it is even thought they may be able to read a word before being able to speak it.

16. Ellie was born with a broken heart, but aside from the scar from her surgery you would never know. We have our year after surgery checkup on Tuesday.

17. Ellie loves other kids, she gravitates towards them and waves and laughs. And every time they laugh back. 

18. Although she has a very easy going personality, Ellie is not always happy. She has bad days like all us and when she’s upstairs in her crib and doesn’t want to nap, she let’s us know, in the loudest possible way. 

19. New things can be hard for Ellie. When we are in a new surrounding that may be loud or too dark or too light it takes her a bit to adjust. 

20. Years from now I will see that both my children have enriched each other’s lives, never holding each other back, only enhancing the possibility to be better than they could be alone. 

21. Ellie had a genetic test when she was born that outlines her chromosome abnormality, that clearly defines she has Down Syndrome, but that is the only thing that is set in stone with regards to her diagnosis. She will grow and learn and be her unique and wonderful self, just like everyone else. I keep her tests in the bottom drawer of my desk and have only looked at them once. They are not a manual for Ellie and they will never define her. 

 

 

 

 

  

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2 Responses to World Down Syndrome Day 

  1. Vicki Bartholow says:

    OMG! What a precious girl she is! I love her! She makes me laugh . Thanks for sharing! 🙂 VB

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