Monday, March 14, 2011

sometimes it is just so hard…on my heart.

     One thing I have said over and over:  The hardest thing about having a child with Down syndrome is not the Down syndrome itself, rather the misconceptions I have to constantly face and invalidate.

I can handle the doctor’s appointments, the therapies, the evaluations. I tackle those things, even when they seem overwhelming.  I can handle that. I can also very easily do the milestone delays. I know in my heart that God has given Ethan the ability to reach his milestones, it will just take him a little longer and a little more patience from others. 

But to consistently feel like I have to be on the defensive and to consistently have to educate others, it becomes weary.  I have learned to choose my battles. Sometimes I say nothing at all when given a chance because not every chance given is worth the effort. And sometimes, the people are not worthy of my time.
Honestly, I don’t care much for hanging out with people who don’t have a child with Ds. I don’t want to be stuck in a room when some random person slips with some awkward comment that somehow affects me, my son, and my family. I like my comfort zone. I like my friends who are parents to a child with Ds. I like my handful of friends (who don’t have a child with Ds) who respect me and my son and truly “get it”.

I have admitted many times already, that before Ethan I never had any direct contact with anyone who had a child with Ds (or any other intellectual disability). I knew NOTHING. I used words that dehumanized individuals with disabilities. I was an ignorant person. NOBODY ever told me otherwise. But now God has told me otherwise… I thank God for the opportunity he has given me, to parent His child.  I know better now. And listen, God has placed us in each other’s path for a reason. Make something out of it.

But DANG it, sometimes it is just so hard…on my heart. 

I look at my son, and I see a beautiful human being. Just like his sisters. Just like any other child. 

And why do us parents have to fight so hard for something that should be a given. 

Why do I constantly have to remind others how valuable Ethan’s precious life is. 
And now with this non-invasive prenatal test for Ds coming out soon and how some doctors are marketing it as a way to eradicate this “disease”!!! Down syndrome is not a disease! And since when is it acceptable to want to eradicate a specific set of human beings.  These doctors and researchers with no firsthand knowledge or experience with people with Ds… who only see $$$$ signs instead of the actual value of life. It is sickening. 

And how many times do I have to tell family and friends about how demeaning the word “retarded” is. Plain and simple: You are related to Ethan (or you are a close friend of ours). The word dehumanizes my son. You are placing less value on my son’s life (even if you aren’t directly talking about Ethan). Seriously, it is much easier to just make the change than to sit there and try to tell me why the word is not offensive. 

Seriously... do you really think you are going to change my mind on how offended I should be? Do you really think your lack of knowledge and experience qualifies you to tell me otherwise? 

I live this life, day in, day out. With my son, who has an intellectual disability. I think I know firsthand. I am the one that has to fight for his rights; I am the one who has to stand up for him. I hold him tight in my arms when he faces discrimination. So don’t you run your mouth like you know better than me. 

Until you have to parent and love and care for a child like mine, you are disqualified to try to prove me wrong.


  1. I hear ya mamma! Hang in there my friend!!!! So glad I have people like you in my life to know that I am not alone. I adore Ethan!

  2. Well said!! I felt and related to EVERY word in this post!!

  3. I am so sorry there is such a rough road of this for way too many of us! I am grateful to have people speak out!


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