Saturday, May 21, 2011

I'm THAT girl, and frankly it sucks.

What am I supposed to say?  I write so that I feel better, but it's always easier to write when I feel great. Catch 22.  I don't want to be that girl.  But, I already friggin' am THAT girl. That girl that people will feel awkward around until they spend enough time to realize that there really isn't all that much awkward about my life.  Yes, I have a baby who has an extra chromosome.  He's still beautiful and smart and lovely.  But, I am THAT girl- whether I like it or not.  And I like it not.  It seems to be particularly awkward for people who are having babies. I ran into a Mom at Christian's preschool, who I used to really like.  The last time I had an actual conversation with her was the day I told the Mommy and Me class that I was expecting a baby with Down syndrome.  Actually, I didn't tell her directly.  I told a small group of Moms and the teacher of the class.  I had to leave early that day for an OB-GYN appointment and the teacher asked if it was okay to share the news with the rest of the class in my absence.  I said it was fine.  From a good friend in the class, I found out that this particular woman cried like a baby when she heard the news.  This year, my son and her daughter are in the same class.  I have felt and written about how I feel she avoids me.  Avoids all eye contact.  On Wednesday I saw her again--she didn't see me, or pretended not to see me, and at first I buried my head in my phone while I waited for Christian's class to let out.  Then I thought, Hell no.  I walked right up to her, stood next to her and said Hi!! How are you?  She smiled and said Hi, and then I asked, "So, how is life with 2 kids now?" (She very recently had a baby, who was with her.) She said, "Oh, I have three now.  We also have one in Kindergarten." (Oops.) I said, "Oh! How old is he now?"  She said, "She (oops again) was premature. She's four months, but had she been on time she would be two months old.  She's been a lot of work.  She had to be in the NICU for 39 days."  Wow.  I mentioned having a brief NICU stay for Elijah, but expressed some compassion for how difficult the experience is, and how I can only imagine how difficult a longer stay must have been.  The door to Christian's classroom opened and kids and parents flooded the doorway, relieving us both of the conversation.

I know some people are uncomfortable around me now.  I know some people are uncomfortable with what they actually don't know anything about.  A few weeks ago, a very close friend of mine and I were talking long distance on the phone.  She's always been one of those friends that I could be very open, honest and raw around.  And she is the same with me.  In this particular conversation, I was seeking a little advice that had something to do with people's reactions (specifically friends reactions) to this Special Needs Mom Cape and Neon Lighting that I apparently have branded on me forever. My friend said, "Well, I have to admit that I have been pretty uncomfortable when you talk about Elijah or Down syndrome.  But, then again, I've always been uncomfortable talking to friends who have children, because I don't have any kids yet.  I don't understand what they are going through and it has always made me a little uncomfortable."  I literally had to pull out my best possible acting to keep from breaking down into sobs right that second.  I understand what she's saying, I do.  It hurts anyway. I sobbed my eyes out after I hung up the phone.  I wish I could say that this was an unusual or unique scenario.  The reality is, it is COMMON.  It's just that this friend was the only one who decided to be open and honest enough to admit it.  People don't perceive my family to be a carefree one anymore.  That instead there is something heavy and burdensome that has come into our life.  Not that Elijah, per se, is burdensome and heavy- but perhaps that the experiences we have gone through in finding out prenatally, perhaps the extra odds of having some health complications, and the fact that we will have challenges in getting people to see Elijah, and our family by extension, as more alike than different than theirs. 

I feel the awkwardness- even when it's not spoken of.  I wish I could say it was all in my head, but it's not.  I'm learning to have a little tougher skin. To focus on what is actually true in my life: I couldn't love my family one ounce more.  Not even if the youngest member had come without an extra chromosome.  I am so head over heels in love with him, it is ridiculous.  I don't feel burdened by him.  I am 100% happy for my friends who are having perfectly healthy babies-- luckily, mine was too.  I went through some true life changing experiences in the process of coming to terms with Elijah's "Designer Genes".  It didn't leave me bitter or feeling gypped. I truly believe that God gave me exactly the right baby for me.  I don't have a magic wand for people to know what is in my heart.  I don't have a magic wand to keep people from feeling burdened or uncomfortable because my life has certain, newer challenges.  I have Time.  I believe that in time and with enough exposure to me and my family, that more people will "get it". It's not easy to be patient for that though.  Sometimes my heart does hurt from it.  I'm THAT girl, and frankly it sucks.

Something I read has stuck with me deeply though....In the blog or article (or who knows where I read it now...) a woman used to see this Mom at her kid's school who had a child with Down syndrome.  The woman used to watch this Mom and think that she had such a quiet dignity...a calm contentedness that she couldn't put her finger on.

I strive to be THAT woman.  The one with grace and dignity and a calm contentedness....Right now, I'm probably just a little too loud and bold and opinionated to be THAT woman, but that's what I'd like to be. 

I'd like to be THAT girl.



Becca said...

Such an interesting post. I may be deluding myself, but have never felt that people are uncomfortable around me (the non-Ds friends). I always thought it was because I was still the same person, wasn't burdened by the diagnosis, and act just as happy (and loud and opinionated!) as the next person. I have no doubt you're the same way...I wonder why your experience has been different. Could it be a regional thing? I'm sorry to hear about that, though, and especially with your close friend you felt you could talk to about anything. That's got to be such a blow. :-( ((hugs))

Laura said...

Dear Jen,

Your friend did you a favor by being honest with you... I remember being at a crossroads in my life a few years back... I had one brave friend that loved me enough and trusted me enough to be honest with me. It was one of the single most important conversations of my life. (I will tell you one day if you want to hear about it; girl talk) If her words give you insight into what is going on with chance encounters at pre-school pick-ups. But the burden is not all on you to be gracious and dignified... to know and understand you are just a Mom like all of us thrust into this new world of uncertainties. I have more questions than answers these days (whose needs trump? Husbands for couple time or babies for Mommy time in that morning bed snugggle?) it is also on mothers of three at pre-school pick ups etc. Logically, you are the same person you always were facing new challenges like all of us, just your subset is slightly different. I am not a sage, but maybe dignity comes when you stick to learning your life lessons as they come your way and allow others to be on their own course when it comes to their life lesssons instead of see yourself as the catalyst (ok, now I digress into my own issues, let Kathy tell you how she saved me from myself).. the point is, great post, great insight, great God.

carrie said...

Weither you believe it or not, I feel you are THAT girl, you do have grace, dignity and calmness. I see it every time you are with your children. When really they need to see that more than anyone else. You will always run into people and your children will always run into other children who just don't "get it". Don't waste your time or theirs. Surround yourself with people who do "get it" and teach tolerance for those who don't. Great post.

Jenny said...

I can totaly relate to this! I feel this also with my friends and some extended family. Sometimes there is just an uncomfortableness in the air...People will actually ask about our other children but are afraid to even mention Russells name. It bothers me. A LOT! And it hurts...I mean Russell doesnt have the plague, he's not this suffering diseased person we are ashamed of. Why does it make people uncomfortable? And I too want to be that woman with grace and dignity and a calmness about her.
Loved the picture at the end. You have a beautiful family.
Great post! Thanks for sharing :)

lisamartsolf said...

Your are THAT girl! You are Elijah's advocate, his warrior and his loving mommy! You know who your "family" is on this journey and those that are uncomfortable is only their ignorance lending a hand to the mirror you may possibly reflect in their own life. Those of us that know you and love you and your Elijah simply and beautifully without pity but celebration for this beautiful little boy that blessed all of us by his presence. We are truly honored to know this little boy and we love all of you! :)

thea said...

I have nothing wise or insightful to add, only my observation. You are a wonderful combination of grace and dignity sprinkled with the fun, frazzled, zaniness that comes from being a wife and mother. Perfectly imperfect. I don't see your family as any less carefree then the next. And who's family really is all that carefree anyhow?? Maybe I just see the commonality, and not the difference.

Sorry it's been a funky feeling week. Hopefully the love from friends and family will see you through it. xoxo

Linda said...

I completely agree with you! I could go on and on but I will probably just send you a private message. I also had a prenatal diagnosis, and after I made it public that our unborn baby did in fact have Down Syndrome, I watched people avoid me like the plague. Now, as I take Lila to our regular pediatrician, or gymnastics, or private preschool, or ballet or even sometimes our therapy center, I get the same thing.

Okay- I really am going to send you a private message. I feel you girl!

Runningmama said...

I just found your blog from another that I read. I have a daughter Emily with DS that just turned 2. I can say that I have experienced the same thing as you to some degree with certain people...the good thing about it is that I can tell a lot more about the character of a person by the way they react to Emily. I am your newest follower :-)

Kelli @

Bethany said...

I'm sorry you have had these experiences girl! I think it is normal for all of us, honestly. Some of us just choose to ignore it, or for me, I usually butt it in the head and purposefully talk about DS and stuff with those who I know are really uncomfortable, to let them know it is ok and I'm the same Bethany that I was before I landed two chicks with an extra chromosome.

Anyway, while reading this, I was thinking to myself, "PLEASE! Jen is such a bubbly, warm girl ... anyone who shys away has their own crap to deal with."

Hugs mamacita, can't wait to see you again!

Anonymous said...

Hi Jen,
I have been reading your blog for a while. I just wanted to say this is a beautiful post. I don't have a child with Down's syndrome, but I am am an adoptive parent to a child of another race, so we stand out, and due to our ages people perceive that thers is some "heaviness" to how we got here. And you know what there was, but he is the greatest blessing. You are different, and you are wonderful.
I also wanted to let you know that one of our son's greatest fans is a 50 year old man with Down's Syndrome who lives in our neighborhood. He lives on his own (family check in on him) but he lives alone, and he retired - yes retired from his job last year.
Knowing him is really a blessing, so there is much to look forward to.
Best, a fan.