what I want you to know: adopting a child with down syndrome.

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. (If you are new to this blog, regularly schedule programming will resume after the holidays, but you can check out the “Best Of” section in the meantime). If you would like to submit a story to this series, click here. This guest post is by Ursula..Photobucket

I want you to know that I am madly in love with my daughter.
I wish that went without saying.  I want you to know how many times a week people ask questions or say things that make it clear it's not obvious to them.  Comments like "Wow, your son seems to really like her just like a sister;"  "You are so amazing to be doing this;" or "I could never adopt a child with special needs."  I want you to know that the fact that my love for my daughter ever is met with a need for clarification makes me want to scream and cry.
We adopted Joy when she was 2 weeks old. We weren't planning on adopting a child with Down syndrome, but we were open to whatever baby God sent us, and there she was.  I am her mama.  The person who, along with my husband,  has held her, clothed her, fed her, rocked her and taken care of her for every day since she was 2 weeks old.  I am who holds her when she is sick and cheered for her when she took her first step.  I am blessed to have a biological and adopted child, and I can tell you that while the mechanism of arrival is dramatically different, the feelings I have for my children are not.
I want you to know that parenting a child with a developmental disability is hard.  Really hard, but not because of Joy.  Until we had Joy, I never realized how much our words and views of people are shaped by a belief that what matters is IQ.  We may not say that directly (or even think it aloud).  But how often do we describe things or people we don't like as stupid, dumb, idiotic, or even retarded?  I want you to know that as a mom to a kid with Down syndrome those words hurt.  I want you to know that I don't think there's any reason a person needs to use the word retarded to describe things they don't like.  It is a slur.  It may not be meant as such, but it is.  I want you to know that one of the best gifts you could give people with intellectual disabilities and their families is to expand your vocabulary and come up with other words to describe things you don't like.
I want you to know that everything God values my daughter can excel at.  She can grow up to be a woman of character who loves and cares for others.  She can know and share God's love.  She could also grow up to be a total jerk.  Just like any other kid. 
I want you to know that my daughter is not Down syndrome.  She is Joy Aanya.  She likes broccoli, Stefano on American Idol, loud drum beats, and laughing.  I want you to know that she climbed to the very top of a chick-fil-a playland and put herself down the slide before she walked.  She is strong and determined.  She loves her dogs.  She is smitten with her dad and brother.  She has the cutest toothy grin.  She has an amazing sense of rhythm.  She is not always happy and she is incredibly stubborn.  She is ours.
I want you to know that if you really want to support me, the best gift you could give me is just letting Joy and my family be who we are.  Include us.  Include Joy.  There have been some lonely moments in the last 2 years.  We quit being invited to a playgroup the minute the leader found out she had Down syndrome.  Some people we thought were close to us have vanished.  Others have shown up for us in the most amazing ways, but it has still been lonely at times.
My husband and I are not saints nor are we fools (at least not for parenting Joy).  Her diagnosis is neither tragic nor amazing.  She's a kid who does stuff slower than other kids and needs more help learning how to do them.  That's pretty much how Down syndrome affects her and us.  People either pretending she's not delayed or is "just like all other kids" or acting sad about something we're not grieving is not helpful to us.
I want you to know that since becoming Joy's mom, I have fallen in love with our church. Because we don't have to explain ourselves or who we are there.  We don't get asked weird questions.  We can just sit around with other parents and talk about our kids.  We can laugh and cry and pray.  We belong.  I know not every church is like that.  I'm so thankful ours is.  I want you to know that if you know families that have children with disabilities, the best gift you could give them is just to welcome them, tell them what's great and hard about your family, and listen as they tell you the same.

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