I’m linking up with Kaitlyn today for her Friday series:
My daughter doesn’t have Asperger’s. But she does have a disability: Down Syndrome.
Also, biologically, she is not my daughter. This would would make me her step-mother and I have only been in her life since she was eight years old.
Step-mother. Step-mom. Mom. Mommy. Mother. Caregiver?
Who am I?
In Marie’s world, I am her mother and there is no other. Even after meeting her biological mother a few months ago Marie still has one mom. That’s me.
And if I’m being honest with you, sometimes that down right pisses me off.
See, I wasn’t supposed to be her mommy. I was supposed to be her step-mommy. I had aspirations to be the best, too. And before V (bio mom) left town three years ago, I was the best. I looked past all the weird things Marie did all the time. She has down syndrome for crying out loud. I didn’t even know what that was until I met Mr. Sexy and worked up the nerve to ask him about it. Then I had to do research. Lots and lots of research.
Four years later I still don’t understand down syndrome. I still don’t understand Marie.
Well, I became Marie’s full-time mom just a few months before Mr. Sexy and I married. Towards the end of the school year Marie lived with me and my son in my two-bedroom apartment while Mr. Sexy lived with my parents two hours away so he could work until the wedding. During those months leading to our wedding day I wrote Mr. Sexy three letters at three different times, each one giving him an out to our engagement. I felt like I was going through hell and we weren’t even married yet. How was it going to work to become a loving family?
In my letters I poured out my heart leaving nothing to the imagination. I told him how I yelled at her and made her cry as my non-understanding of her was the gateway to anger leading me down a very dangerous path. I have spent the past three years learning that my anger is not at Marie but with something else. She just happened to be an easy scapegoat.
God has been hard at work in my family. And so has Satan. There is a constant tension and when I relax Satan attacks.
This next line is hard for me to admit and believe in my heart and believe in my head as truth:
Marie is teaching me every day.
When I’m too hard on her because she is not putting dishes away correctly, she is later able to smile, hug me and forgive me. When I’m beyond frustrated at the fact she ate more inedible stuff and I lash out with a tongue of fire, she will later accept my apologies and return with her same love and affection.
Bottom line: She loves me. As much she doesn’t understand me, she loves me.
For a long time I thought I hated her. Her differences were in my face, taunting me constantly. I thought I disliked her so much that I would wish V would come back and whisk her away. Then I joined an amazing support group and was able to talk openly with other women who understood how I felt. The encouragement and truths they told me stunned me, motivated me, and gave me hope.
“You obviously love her very much” is a comment I received so many times. At first I shook my head (isn’t that awful) and was taken aback because love was not what I was feeling. As I heard this phrase from my friends over and over again I began to see the truth behind the words.
I wanted her to succeed in life and when she didn’t I was disappointed which looked like anger instead. I wanted her to stop peeing the bed because she was getting a rash from the pee and it looked like it hurt. I wanted her to stop binge eating in the middle of the night because one day it will make her overweight and sick. I wanted her to stop chewing her fingers because it made her look weird to her classmates. I wanted her to talk in sentences because friends and strangers weren’t able to communicate with her well.
I wanted a huge list of things for her. But in my eyes she fell short over and over and over.
Finally the darkness covering how I see her is starting to lift. I actually think our new endeavor of homeschooling is causing relationship change in a positive way. Now Marie and I spend all day together. All day. A year ago I was happy if she spent all day in her room after coming home from school. Now we talk all day and I am teaching her things. I am learning how her mind works and am challenged constantly to find new ways of getting information to make sense to her.
We still have our off days. She still likes to find random stuff to eat (and we are working on this). She still pees the bed if we don’t wake her up through the night.
I’m finally starting to see her for HER apart from the down syndrome. In my mind she used to be a walking Down Syndrome. I know that’s wrong and terrible to even think, much less voice out loud or on the internet where anybody can take my words and misinterpret them. But it’s the truth. For so long I have struggled to see past the appearance. Now, years later, I’m finally starting to see her heart.
Marie amazes me at every step of life. It’s hard for me to accept that God placed her and I in each other’s lives for a purpose that will and already does bring him glory. Our story isn’t about me, or her or my amazing family. It’s about His Story. I am lucky to have a part in it.
Step-mother. Step-mom. Mom. Mommy. Mother. Caregiver?
So who am I really?
Logistically I’m her step-mother and I accept that title on paper. Emotionally, however, I finally accept my earned title of Mother.