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.