Wednesday, January 13, 2010

That Night

It was sometime in July, I think. July of '09.

6 months ago...

That was the last time I cried hard about Down syndrome.

I remember there were a bunch of us there that night. We were all sitting around the kitchen table eating dinner. All of a sudden, out of nowhere, the "R" word was casually dropped and just as quickly, my heart shattered - not just because of that, but that most certainly must have been a trigger. I put my fork down, forced myself to swallow what was lodged in my throat, and excused myself from the table. I went into the bathroom, braced myself on the sink and looked in the mirror. I told myself to breathe. Please just breathe. In and out. Shh. It's ok, it's ok.

I splashed water on my face and went back to the table. I said nothing, nothing! and pretended that everything really was ok. I pretended until I couldn't anymore and instead went up to bed.

Oh, I can remember just how hard I cried that night. I think it may have been the hardest I had ever cried in the name of Down syndrome. I felt worse that night than I did the day we had heard Dylan's diagnosis confirmed. I cried because I was sad, of course. But I now know that I was also extremely afraid, vulnerable, uncertain, and I was angry.

It was as if I had suddenly known that things were going to be different.

Earlier that day, on the beach, Cassidy had me in hysterics - she had busted my chops about something and we couldn't stop laughing about it. I remember hugging her so tightly, while laughing, and saying, "Oh Cass!! I just love you so much!". That night, I cried because I did not know what kind of relationship Dylan and I would have. What would it be like when he was 3? Surely he wouldn't be able to joke around with me in the way that Cass did? Would he even be speaking by then? Walking? Oh, it hurt to think about...

Also earlier that day, there was a young woman on the beach who had Down syndrome. I couldn't stop looking at her and thinking how surreal it all was that some day, Dylan was going to be a young man with Down syndrome. I couldn't picture it. How was it possible?

I cried that night because truly, I was a terrible advocate, and I knew it. I was horrified with myself - disgusted that I did not say anything in response to the "R" bomb that was so casually dropped in front of Dave and me. Yes, confrontation is very uncomfortable for me, but why couldn't I suck it up for my child? Why didn't I open my mouth and explain how the use of the word "retarded" in regards to making fun of someone, is not funny - how, as a matter of fact, it is offensive to my baby, my sweet baby who was asleep upstairs.

Oh, I cried because it all seemed to fall on me at once - this new reality. I was the mama of a child with Down syndrome. Oh. My. Gosh.


That was the last time I cried like that - the last time I felt like that. I think I've had small twinges every now and then, but nothing of that magnitude. And I am sure that there will come a time again, where I will cry more tears in the name of Down syndrome, but oh how I hope the pain isn't ever that severe. I can't imagine it ever will be, though. Seeing Dylan now...he makes me so happy. He makes my life...better. And I should think that that's more than enough for me...

Really, what more can one want? Besides happiness...and love...


Sheila Mitchell said...

Oh Laurie, you've hit a nerve with me. It's a roller coaster ride of feelings at first, which is NORMAL! But as time goes by you look back & think, how on earth did I do it? You learn, you grow, & knowledge is power! Dylan IS your inspiration, and yes, he will have you laughing histerically & give you many good memories just as Cassie does. I remember the fear & the 'not knowing', but I feel as tho I've been to 'H-E-double hockey sticks' & back with Mark. BUT he is the light of our lives and everyone else he meets. That is what you will get with Dylan, as you already know! It IS challenging & rewarding, and you are a strong woman and will only get stronger! There is a reason for everything, (I believe) we just don't know the reason right away. You & your family are an inspiration to many. I look forward to many more stories & photos of your journey, as you still inspire me! XO,XO

Angela said...

You're doing well! :)

I was hit hard with it all over again on Thanksgiving Day. Oh. My. It was hard. I was so sad and just overwhelmed. B had been sick for nearly five weeks and it was just a constant reminder of how we will always deal w/health issues in one way or another.

It was the first time since Jan or Feb that I had let it get me that down. (lol, no pun intended)

But I think with each time in the dumps, I get stronger and embrace it that much more.

This isn't easy, that's for sure, but at least it's not all for naught. We have beautiful boys and a wonderful new perspective...most of the time. :)

Adrienne said...

Been there, done that-cried that is, and HARD over DS. But it truly has made me a stronger person and I know my life has changed for the better. Thanks for sharing this.

On another note I know what you mean about avoiding confrontation and standing up for your son. I think I would've done the same thing if I were in that situation, who wants to make people feel uncomfortable? But you know, they made you feel extremely uncomfortable and that isn't fair either. As far as the r word is concerned, I think for me the best way is to post things on my blog and in my FB status. People need to know that it's a hurtful word. I hate that any time I'm around a group of people I'm so afraid someone is going to say the word and I'm going to feel hurt, mad and awkward all at the same time. And it shouldn't be that way. But I also think as parents of children with special needs we need to have thick skin because truly most are not in any way trying to hurt us personally of course and everyone makes mistakes but I guess it's our job to let them know when they make those mistakes. It's hard though, I know.

Kimberly said...

I have already seen Dylan crack you up and 'joke' with you. With his faces and sneaky ways.
I can't say I know exactly how it feels but I have heard it a few times and not said anything, when I usually do. If I don't say anything I regret it. I think it is just they way you approach it. It is hard to confront someone, but I feel like I am doing wrong by D and MANY others if I don't.
You are doing amazing L.

Rachel said...

I haven't really had many opportunities that needed me to advocate for Ds or Aubrey, but I, like you, don't like the confrontation. Not to say that there were not tears, or that there won't be more. It is not an easy road, but I do think that there is more joy with her than the other girls. Her accomplishments are so much more exciting because she works so hard to get there. My relationship with her is and always will be different, but in a lot of ways, there is more joy there and that is something to treasure:)

Kelly said...

It is very emotionally overwhelming to hear the "r" word (even if it is not directed to our children). Confrontation "is" a very difficult thing, but educating others as "advocates" for our children is ALWAYS OK! I believe that all of these emotions are part of what this journey is feel, to live, to love and to grow! Laurie, you are an inspiration to all.....just look back at your blogs, you and Dylan already have so many wonderful memories! And something tells me there is so much more to come!

Hector and Jennifer Varanini Sanchez said...

Love it hit the nail on the head with this post. Life is BETTER with our children with DS. Plain and simple.

Kelli said...

Wow Laurie...thank you for sharing because I could truly sit here and understand how you were feeling in that moment. I think we will probably go through these ups and downs through life, but maybe they will get further and further in between.

I too have had a hard time when the R word has been mentioned in my presence. I have such a hard time with confrontation that I have not said anything, yet felt horrible afterwards that I didn't say anything for Colin's sake. I'm slowly learning ways that I can approach this without making all involved feel uncomfortable.

Thank you again for sharing...

Anonymous said...

We can not imagine somone saying that.I have sat here for a long time before writing to you about this.I have never been told i was speechless but i am speechless now.I know one thing for sure,you have been picked to love and care for Dylan and the rest of the family by a more Powerful God .He will take care of us all. God Bless
Stay Strong
We love you all.

Tim and Kelli said...

Oh man some of posts sound exactly like what is going on here.
I also have a hard time thinking about Brooke and what she has done/does in terms of what Lindsey will be doing at that age. I can't help it. They are so close in age.
I am not good with confrontation and although it hits me hard I know that they are not doing to intentionally hurt me or my family.
You are doing a wonderful job with Dylan and he is an amazing little guy.

Loren Stow said...

What a beautiful and honest post. Your words are so powerful and you've shared something valuable, that many of us can relate to.
I think that the only thing I can say is... do your best - and - take it one day at a time. Don't look too far ahead, because you can't know what the future holds - love and cherish Dylan now, because he's beautiful and perfect and yours.
I can assure you, when Dylan hits 10, 15, 25 years old, you will still love and cherish him because he'll still be beautiful and perfect and yours.

Kristen said...

I have been there. I have left a situation instead of being confrontational and then I have kicked myself later. I have also completely called people out and embarrassed the bejeezees out of them too. :) Finding the perfect balance between educating and humiliating back has been hard for me. I tend to pull the offender to the side and have one-on-one chats versus calling them out because I have found that they just get defensive and what I am telling them simply goes in one ear, out the other and then they get rude from being on the defensive.

Just the other day, I saw a post on someone's Facebook wall that said, "Your girlfriend is a 'r'". I could have called this girl out right then and there, but I prayed about it and wrote her a heartfelt message. She responded apologetically, but did not use people-first language, so I was able to educate on two levels that day.

That was a long-winded response to say that I know exactly what you mean. :)