Aubrey goes to preschool. A school filled with normal little three year olds. With two older siblings she couldn't wait to start going to school and so I found one for her, two days a week for a few hours. I was so excited for her...and for me...other mothers to meet!
I've been sort of a recluse in the friend department. Over the years, I have discovered that other mothers as a general rule don't want to visit very often...I can't blame them, for Hailey pulls their children's hair and doesn't play well with their children so they get bored. Oh they still visit...just not often. And plus, I worked a lot and didn't have the time to cultivate new friendships. Many of my childhood friends disappeared when Hailey was born. I was an emotional wreck and all I spoke about was her disorder, her therapies, her doctors, my sadness. I was self absorbed and they all just faded away...and I let them. I wanted to be alone back then, in my sadness, in my new role as the mother of a special needs child...With my new identity.
Since I've been a "stay at home mother" for a little over a year, I found that I am lonely. I have a couple of wonderful friends who I love and cherish...but they work hard and have families or live far away and so I don't see them very often...don't talk to them as much as I'd like.
So I went to this school excited to meet other mothers...potential friends...so I wouldn't be so lonely...so I could connect with other women who stayed home too...to see how they staved off the loneliness...
But I found that I have a problem. I have defined myself with Hailey. With her disorder. With her therapies. With her doctors. I guess I had to...have to, whatever. But I'd like to not be defined by it.
I began to think and realized that everyone I meet, I tell that I have a nine year old with a severe genetic disorder...I dare them to ask me what it is...and for that question (which always comes) I have a standard well rehearsed answer...I could say it in my sleep. It is an "elevator" speech...It is her disorder in a nutshell, in a 60 second explanation...And so I am defined by it.
I try so hard not to do it. Wonder why I can't just say I have a 14 year old, a 9 year old and a 3 year old. But no matter how hard I try, I can't stop adding Hailey's disorder after her age.
She is certainly not defined by it. She is Hailey. Beautiful. Stubborn. Loving. Sweet. Nine. She is her. She is not Cri du Chat. She is not 5 P Minus syndrome. She is not Autism or auditory processing disorder or sensory disorder. She is simply Hailey.
So who am I? What defines me now?
Wow. This is a tough question. I've struggled with this question myself. As Olivia gets older, I find that I need to stop myself from telling strangers about her disorder because, well, it's getting to the point that it's not my story. It's hers. And if she wants to share it later in life, she can but I need to step back and remember that I'm more than a mom, more than a wife. I'm a woman with interests that go beyond my family.
ReplyDeleteGood luck with this one. I find making friends difficult too.
I think that I just don't want people to think that I am ashamed of her...and I'm not. I am proud to be her mom. I also don't want people to see her and ask in front of her, so I feel like I'm avoiding the uncomfortable feeling of having to explain it in her presence. There are so many reasons but I do need to stop doing it...My step father never said, I have one son and two step daughters...he NEVER added the step part...I think I am doing her a diservice by adding the disorder part...
ReplyDeleteOMG!! I really understand what your going thru because I am going thru the same thing at this very moment. And, I do think we are defined by our experiences but as our life changes and we experience new trials and triumps so does the way we dfine ourselves. So there is really no way to define ourselves because we are always evolving to fit our needs and the needs of our families.
ReplyDeleteI think this is true of a lot of us. I have a hard time with this as well. But I'm getting better!!!
ReplyDeleteMy husband and I found out through amnio. that our daughter had cri du chat syndrome. She was born at 23 weeks and was with us for only a few hours. I can appreciate what you are going through, and what the future would have held for us because I am a nurse who works with babies and children. Hailey is so lucky to have you!
ReplyDelete