What does a Down Syndrome mom look like?

I want you all to know that when I talk about the difficult times after I gave birth to Nicholas, it in no way means that I am upset about his having Down Syndrome.

There are two reasons that I talk about it so often. The first is because when I was going through it, the one thing that uplifted me when I least expected it was reading the blogs of other moms who have experienced it and realizing that the feelings that I was having were not bad. I learned that I didn’t have to be ashamed of them. If I can provide that comfort to even one other mom, then I will feel like I have done my job.

The second reason is that it has shaped who I am as a mother and as a human being. I feel like I have found my purpose. I can finally use my passion for writing for a cause that means everything to me: the acceptance of people who are differently-abled.

So, this weekend I am going to continue to tell you about those dark days. Please do not confuse this with disappointment, because I could never be disappointed in my son.

I couldn’t find something disappointing in this face if I tried..

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I didn’t know that other parents go through this dark depression and anxiety after their diagnosis. I didn’t know that the mourning that I felt for the son that I had imagined having was something that other parents experienced.  I thought it was just me, and that thought turned my stomach.

There were six long days in between Nicholas’s genetic test and his official diagnosis. Six days for us to talk ourselves out of the inevitable.  We told ourselves that his physical traits were just traits passed down from us.  We stared at him, and silently but surely analyzed his physical features.

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Nicholas just a few days old.

I had all of this time to imagine my future in two different ways.  One of the thoughts that was looming in my head that I couldn’t possibly be a Down Syndrome mom.  I don’t look like one.  They are old ladies who wear elastic-waist jeans.  They have permed hair and glasses.  I have no idea where I got this image from, but it was there.  So, I thought that the test should come back negative, because that’s not me.

I was completely ignorant to the fact that it is not just older women who gave birth to children with Down Syndrome.  So, when we got the phone call from the pediatrician with the results of the blood test, I had to hand the phone to my husband, because I could not speak through my tears.

The days following were filled with a lot of thinking.  I was lost in my own thoughts most of the day.  I didn’t want to have visitors.  I didn’t want to talk about it.  I just wanted to think.

Becoming immersed in the community of Down Syndrome moms is what pulled me out.  I watched their happy families on Instagram.  I saw their kiddos succeeding, mastering their goals, and having friends that were both typical and carrying that extra chromosome.  I started to see that everything will be alright.

So, even though I can’t tell you what a DS mom looks like, I can tell you some things about them.

They are brave.  Brave enough to fight every day for their children to be treated well by the world.

They are strong.  Strong enough to bear the ignorance that the world has about Down Syndrome.

They are compassionate.  They see their child, and other children, for the things they can do, rather than the things they can’t.

They are advocates.  They dedicate themselves to educating their communities about Down Syndrome.

Thank you, moms, for sharing your lives with us, making new moms feel welcome in this community, and inspiring new advocates along the way.

#advocatelikeamother

 

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