Thursday, January 26, 2012

Momentarily- it brings me down

This morning a dear friend on FB posted about how she learned today that the kiddies in her 2yr old’s class can count to twenty. And she had a Ds mommy breakdown.  

I assume the differences in her son and other peers his age became very apparent at that moment.

(First I must say, neither one of my girls could count to THREE at that age.)

And I know this mommy, and she is a really amazing mommy and she has unbelievable love and faith in her son (don’t we all). But sometimes getting slapped in face with what it (ds) really is, is harsh.

In reality I think we all have our Ds "sad" moments, or whatever you wish to call them. Some of us might have them more frequently than others, and some of ours might be shorter lived than others, but I guarantee you they are still there. No matter how you feel about Ds.

I know most of the time I have positive things to say about Ethan and most of the time it seems like nothing in regards to DS fazes me. For the most part, it is true. I was able to accept Ethan’s diagnosis within a week, I didn’t love that he had Ds, but I accepted it. I later came to have an “understanding” with Ds, and we became tolerable acquaintances. You know, like a coworker you have to work with that you neither hate or love, but they are just there and you are able to tolerate them well and sometimes you even like them and you even go to lunch occasionally and you actually enjoy it. Yeah, that has been my relationship with Ds.

But lately, this “friend”  that I neither hate or love, is starting to annoy me and frustrate me.

Yup Ds is finally starting to annoy the crap out of me.

I love everything positive that has come out of my life because of Down syndrome. I appreciate the change in myself and my husband. I love that I can honestly say that we are better people because of it. Honestly, I appreciate my children more now than ever. I truly understand how blessed I am now.

But who am I kidding, Ethan’s delays are becoming more and more apparent. Really, it is what is and I can live with it, but sometimes it momentarily brings me down. Not for long, not for days or hours nor minutes, just split seconds. I know I cannot dwell on the negative. I can’t benefit Ethan if I stay in my funk.

But damn. It sucks.

To know that Ethan is a 2yr old little boy that functions more at a 1yr old level. To see your child struggle in areas where other 2yr olds are just flying by him.

The thing is, I am NOT in denial. I am around A LOT of people with Down syndrome. We have many dear friends with children with Ds of all ages. I’ve seen them all! From the ones that can talk your ears off to the ones that are nonverbal at age 20. So I know that anything is possible. And in all honesty, I will handle whatever comes our way and I will make the best of it. While it might momentarily bring me down, I know it will all be ok. But I just know that anything can be our reality.

Sometimes I think to myself, “what if Ethan is nonverbal?”

And I know it sounds ridiculous, I know. He is only 2.5yrs old, his speech is naturally delayed because of Ds and there might be other underlying issues. I can’t predict what he will or will not be as an adult or as a person in general. I feel in my heart that Ethan will talk, but at a later time, just not today or tomorrow. And I know it is “typical” for kids that are usually walking earlier than other kids with Ds, they might be lagging behind in speech  and those who arent walking have better speech.. I know, I really do know.

But at those brief moments when that thought crosses my mind, it momentarily brings me down.

Every day I tell Ethan, “Say {insert word} ” to try to get him to repeat a word back to me. I’ll gently grab his jaw and move his jaw for him.

Lately whenever I tell him to repeat a word he’ll grab his jaw and move his mouth for me… or he’ll just move his lips but NOTHING comes out. NOTHING. Not even a squeal. I see the desperation in his eyes, with a slight hint of disappointment. Right after he does that he runs off as if trying to hide the fact that he can’t do what I asked him to do. OR he’ll throw himself at me and starts to wrestle as if to change the topic. I’ll scope him up and kiss those tiny adorable lips, and I tell him it’s ok.

It’s ok Ethan. I’ll wait for you.

I cant say it doesn’t break my heart, because it does. Momentarily.

He might not be talking yet, but he is still an amazing little guy full of many things I wish I could be. How blessed is he, that he will never know some of the pains I know. My sweet sweet child.

While Ds can momentarily bring me down, there are things that are amazingly beautiful that have come out of it and my love and joy for Ethan is infinite.



  1. I don't really know what to say about this post...Other than I loved it, it spoke to me, moved me...And when I read the words "It's ok Ethan. I'll wait for you." I cried.

    Thank you for sharing this Erika.

  2. What an excellent post! We are not around a lot of children with Ds, but we are in a weekly playgroup with "typical" kids Ellie's age. At times, I do have those "sad" moments that you described and I do believe it is normal. Hearing you write about working with Ethan to speak brought tears to my eyes. You are not alone! It is like that over here. Nothing. I hear nothing too. Anyway, Erika, this is a beautifully written post that I believe hits very close to home for many of us.


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