Tuesday, January 25, 2011

Enough already??!!

Hello people.  My blog is about my life...specifically focusing on the fact that I have a young baby with Down syndrome.  It's my way of processing, dealing, documenting and perhaps offering hope to others.  That is what it's about.  Just thought I'd start there, because in case there was ANY confusion, I wanted to clear up that little fact.  I say this, because I heard an...interesting...comment yesterday.  Apparently an acquaintance of mine said (about me), "Enough with the Down syndrome already."  As in, stop talking about this major thing in your life- it's too much.  It is a pretty bitchy comment.  I didn't cry about it.  It didn't hurt my feelings.  I simply think this:  You have NO IDEA what it's like to be in my shoes.  It's easy for you to sit in your cushy, judgy armchair and say that I am talking about my son's disability too much, when your children are not at a specific disadvantage for medical, physical and developmental problems.  What is most ironic, is that this acquaintance, along with a large majority of my friends with children, talk about their kids all the time.  It's what we do.  We have nights out where we specifically agree to not talk about our kids, because that's how much we talk about them.  So, why is it that I don't have that right?  Especially when what came along with my youngest son, was an entire laundry list of what could be wrong, what might go wrong and what will definitely go wrong.  The comment doesn't offend me, per se.  It makes me realize that on the outskirts of my life, there is a very callous person who clearly has never been through one of life's major hiccups.  I hope I never get to the place in my life where I become so insensitive to what other people are going through, that I actually roll my eyes and say that they are talking about something....anything...too much.

When I was in my early 20's, I was in a very on again, off again relationship.  It was pretty draining, but I had my issues too, and I couldn't extract myself from the situation for many years.  My friends heard about the latest break up or make up every other week.  I am someone who has to talk things out in order to process my feelings, hear my words out loud, and get the advice of others in order to move on.  It works for me to do this.  (And obviously, it's not an uncommon solution or else there would be a lot of therapists out of business.)  There was a point where one of my closest friends said, "Enough already.  I can't keep hearing about how he hurt you and then watch you go back to him."  It hurt me to hear that, but I kind of got where she was coming from.  I had a choice in this situation, and I was the one who kept choosing to get hurt.  I didn't choose for my son to have Down syndrome.  I didn't choose for my son to be at a disadvantage.  I didn't choose to be pretty clueless about what Down syndrome was.  It was just how things happened.  I decided years ago that I never wanted to be like that friend. I wanted to be there for my friends- whether they never wanted to talk about something or whether they wanted to talk about it a thousand times. That comment stuck with me over the years, so when I got news that rocked my world, I realized that it would probably take a lot of processing- at the beginning and perhaps, ongoing.  So, I started a blog.  This blog. So that I could talk about Down syndrome in every. single. post.- if I want to.  Do I talk to my friends about Down syndrome and the ramification it has had on me and my family? Yes, I do.  Do I talk about it all of the time?  Not by a long shot.  To be really honest, I think that my acceptance and coping methods kicked in pretty quickly- especially compared to what some people-who have been in my shoes- say.  I also now have therapists who come to my house 3 times a week to work with Elijah.  I also now have a great community of women who have a child with Down syndrome.  Does this mean I'll never talk about Down syndrome with my friends? No. Because it affects my life daily.  However, it probably won't be as necessary to process things like I did in the beginning. 

I don't really care what this "acquaintance" said.  She's fairly irrelevant to me.  (I saw her about 5 or 6 times, socially, and I know for a fact that DS wasn't discussed at all a handful of those times.) I do care what my friends think.  But, I also know that if you're my friend, you had better be able to own up to saying something like "Enough about the Down syndrome already."  Which doesn't mean I won't stop talking about it, because that's part of who I am and how I "process".  You (this hypothetical friend) can settle into the fact that I talk about my life too much, and I can settle into the fact that you're kind of a shitty friend.  The best news is that the majority of "working things out" will happen on my blog.  It is set up in an amazing way: You don't have to read it. I don't check in to make sure my friends have read my blog. It is not required reading.  My mission for having this blog is about personal growth and about having a public forum for other people who are dealing with life's tougher issues to feel that they are not alone. 

I think it's fitting that I may have said "Down syndrome" in this post, more than in any other post.

Down syndrome. Down syndrome. Down syndrome.

So, Enough with the Down syndrome already??!!   I think that Miss Judgy pants should get an Enough already.  Enough with the judging of a situation you know nothing about.
Yeah, Enough already.
Comments welcome.

10 comments:

Jessica said...

How hurtful that someone would make such a comment. There will never be "enough" of what you talk about here because this is your space to say what you need to say when you need to say it. Expressing any less than what you are feeling is not doing you or your blog or your boys any justice. Keep on just as you are. And to your "friend"....

Down Syndrome, Down Syndrome, Down Syndrome, Down Syndrome, Down Syndrome

skiingthroughlife said...

I totally hear you and get you. I am on my DS soap box all the time, and you know what I can totally tell who my true friends are these days. You are an amazing mother and have been blessed with the gift to communicate for those who cannot. You know many parents with children with all sorts of disabilities don't know how or don't have the resources to speak up for their children, then God gave you Elijah because he know you would, you can and you will.

If you want to talk about it all day long, you go on with your awesome self. Promise we will be here to listen.

This journey is of Grace, Forgiveness and perspective. It seems like all three area always at play.

Hugs to you mamma. rock on

skiingthroughlife said...

I totally hear you and get you. I am on my DS soap box all the time, and you know what I can totally tell who my true friends are these days. You are an amazing mother and have been blessed with the gift to communicate for those who cannot. You know many parents with children with all sorts of disabilities don't know how or don't have the resources to speak up for their children, then God gave you Elijah because he know you would, you can and you will.

If you want to talk about it all day long, you go on with your awesome self. Promise we will be here to listen.

This journey is of Grace, Forgiveness and perspective. It seems like all three area always at play.

Hugs to you mamma. rock on

Katina Childs- Muller said...

Jennifer... I found it hilarious that as I read your blog the song FU was playing... Fitting... I'd like to tell your "friend" that Mom's of children with special needs have challenges everyday that we wish could magically disappear. That we don't need her kind in our lives at all. Cause her "special needs" are not tolerable. Because hers are curable. It sounds to me that she may be an attention whore and doesn't like the attention and interest that people have in your journey. Keep sharing... your journey is a blessing to sooo many. Me included my friend. I feel as though our hearts sing a song that many could never even hear....
With love and respect and gratitude!!!
Kat

Becca said...

Wow. Like Down syndrome is a hobby of yours or something. That woman had a lot of nerve, but she sure did spark a great post! I know what you mean about needing to talk about it more at the beginning, as we work on processing the information we've been given and the life-altering ramifications. But a comfort level is eventually reached and it doesn't consume every conversation with every person. But it never stops being a part of who we and our children are, and is *not* going to go away.

Jenny said...

LOVED this post!! And laughed my ass off when I heard the song that goes with it!! I LOVE your blog and you are right...If someone doesnt like what you talk about then they can stay off your flippin page!!

Alistair said...

You go girl, Khadijah and I always read your posts and find them inspirational. FU you to those who are too ignorant to know just how ignorant they are!

Bonnie@TheFragileXFiles said...

I wonder sometimes if people think my kids and their Fragile X is something I go on and on and on about.....and then I decide I don't care what they think -- it IS almost my whole life. I wish it wasn't. But like you said, those who don't like it don't have to be my friend!

Laura said...

Like!

Carol said...

You go girl! You have every right to share your life's moments with your friends. If Miss Judgy pants doesn't get it, don't waste your time trying to make people like her understand. Until they are ready, they won't get it. Although your grandfather has been gone almost three years now, my mom felt she had to appologize for having some bad days over the holidays. I told her she could share how much she missed dad anytime, anywhere. He was her life. Her identity is shared with him. I felt honored that she wanted to share those emotions with me! So those who love you want to know what is going on with you. I may not be able to walk in your shoes, but your sharing helps me try. Thank you for that. Love and lots of hugs to you Jennie!

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