The Hailey Herald

The Hailey Herald

Friday, April 18, 2014

Down syndrome...the Afterthought

Each year of Hailey's life has been so incredibly difference.  Year 1, started with an explosion of emotion...fear, denial, sadness and guilt.  All of those eventually passed and evolved into relief (after a successful, uneventful open heart surgery) and acceptance.  Her first birthday party brought a lot of tears.  We had made it.  We made it through the abundance of information about different facets of Ds, the therapy and the multitude of doctor and therapy appointments that we had never encountered through with the boys, and finding where we fit in the Down syndrome community.  It was as if we were wearing a medal of honor.  We did it. 

Hailey's second year calmed down some.  We still had appointments, but they had slowed down because fortunately she had been healthy.  She was walking with assistance and gaining independence.  We still had therapy frequently.  That birthday was a celebration.  The fear was gone.  We found our niche in the Ds community and the dust had settled so to speak. 

Year 3 was even better.  Hailey was walking and exploring her world.  Knock on wood, she was healthier than the year before with the help of allergy medicine.  Hailey's speech started to improve and she was interacting more with her brothers.  She was finding her niche in our family.  Her 3rd birthday just was.  We celebrated Hailey and where our family is. 

That first year had me so scared and overwhelmed that I didn't think there would ever be a day that I didn't see Down syndrome in her face.  I was afraid that every minute of every day would scream "I have a daughter with Down syndrome".  I thought it would consume every thought and every activity that we did.  I feared it would overtake our family.  I was so scared that every part of Hailey's personality would revolve around Down syndrome.

The past two years have been much more relaxed (or I have chilled out and started to enjoy life more).  I love seeing the personality that is emerging from that petite body.  I have had several people comment how much personality is busting from this little girl.  She is compassionate.  She sobs when someone else is hurt or upset...almost more than she cries when she is hurt.  She is nurturing.  She still takes such good care of her babies.  Feeding them, rocking them, singing to them and reading books to them. 

She loves her family. 

Just recently, I caught Hailey "introducing" all of her family members to her Doc doll and her bunny chair.  One by one, she went through each picture announcing who it was and nodding at her "audience" and saying "right?"  She is funny and inquisitive. 

Showing her "audience" her family

She is funny, rotten, sassy and mischievous!

She is so much fun and so frustrating at the same time.  But I can guarantee, when I look at this beautiful phase...Down syndrome is not what we see.  We see our beautiful 3 year old...this face just screams Hailey!


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  2. she is so cute!!!! and getting to be so big! I can't believe it.
    will you guys be going to the ndsc convention? moxie and I will be there and i'd love to meet you and hailey... :)

    1. Thank you! Thinking back to where we started, I can't believe how big she has gotten! I can't wait to meet you!!! It will just be me though...I think that might disappoint some people! I might try to find a way to bring her Friday evening. The rest of the family is just hanging out in Indy while I go to the convention.

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