Tuesday, December 4, 2012
Grief
I'm grieving. Today I drove behind the life that would have been. I watched as my son's friends laughed and joked around in the back of a car together as their sisters occupied the front seats. One sister driving and the other boy's sister laughing and joking around with the boys. I know them. I know that the girls are Madelyn's age and the boys are Ethan's friends. I momentarily imagine Madelyn with those girls, laughing and talking about boys. I imagine Ethan feeling like his friends and feeling cool for having a big sister. That daydream is halted as they turn in at the front of the school and I drive around to the back where the students with special needs enter the building. I am reminded that my husband and I take turns driving Madelyn to school (alone) and Ethan rides the bus to distance himself from his sister in the the already difficult Middle School atmosphere. Suddenly I am flooded with reminders of all the ways our lives are different from the families of their peers. I begin to grieve athletic events with Madelyn that will never happen. School dances that will not happen and endless other special moments. If my mind conjured these things up in the way that I write it, it would be easier to move through, like shallow water...but my mind shows me what that parallel life looks like as if I am watching a movie. And. It is painful.
I am blessed and thankful for my life and for my family. I know I will move through this swampy, sinking, sucking mud and find the dry land that is my life, my home. For now, I struggle and my steps are heavy.
Wednesday, March 28, 2012
Count Down to World Autism Awareness Day
Below is from my old blog. It is a post from 2008 on World Autism Awareness Day. As we are approaching 2012 WAA Day, I thought it would be nice to share this sweet memory.
Autism Awareness Day 2008: A Post for Madelyn
Madelyn was born on September 3, 1997.
She was diagnosed with a Pervasive Developmental Disorder-NOS in December, 2000.
On June 28, 2007, she was diagnosed with Isodicentric chromosome 15 & Autism Spectrum Disorder.
I want to share one of my most precious moments with my daughter to honor her and all the other sons and daughters who triumph through autism everyday.
Jim and I use to take turns dropping the kids off at school and picking them up. This year they starting riding the bus together. I'm blessed with this wonderful memory from that time we spent together in the morning. The routine of the morning was to drive Ethan to his school first, then drive a few miles over to Madelyn's school. We'd pile into the car, Ethan chatting up a storm. He'd tell me stories about the dream he had the night before or what he was going to do on the playground later. Madelyn would usually just sit in the backseat making occasional noises and repeating her favorite knock knock joke (knock knock, who's there, banana, banana who, banana peel, hehehe). I know it's not very funny, but it brings her comfort several times a day. It also gives her a way to interact with people and feel connected.
I'd drop Ethan off and he'd say "Bye, Mom, Love you, see you later!" then he'd run like lightening to catch up with his friends getting off the bus. At that moment, I would turn on a CD of Disney princess' low in the background and make my way towards Madelyn's school. I began this habit of sliding my hand behind me on the backseat beside her leg. She sits directly behind me so it wasn't very comfortable, but I wanted to reach out. I wanted to show her love in an unobtrusive way. So, every morning I'd gently slide my hand back there palm up. At first she would push it away or hit it with her knee. Then, after a few days she would try placing her hand on top of mine. Several times she would place it there, then quickly move it away. I could feel the anxiety running through her arm. I couldn't see her, only hear, feel, and sense her. After a couple weeks she was able to lay her hand on top of mine for most of the short drive. On days she was really struggling, I may only get a quick pat, then she would just let it sit there. This was our ritual. This was how we communicated. In her way, she was telling me about her night, her morning, and her attitude toward the day.
One day (etched forever in my mind), she was having a particularly tough morning. She had several OCD mannerisms that had us running quite late for school. I dropped Ethan off, then slowly slid my hand behind me. I was half expecting a swift knee hit. However, she roughly tried to hold my hand about 3 times. I felt her trembling. I could almost feel the internal battle between her heart, her head, and her body. After the third attempt, I heard a soft voice behind me, "Mommy, I love you too." I drove silently with tears streaming down my face. It was an unexpected gift to hear the words we'd been expressing through ritual for weeks.
God bless your day! Remember, you never know what you might get just by reaching out...and waiting...
Posted by Gretchen at 7:15 AM
Autism Awareness Day 2008: A Post for Madelyn
Madelyn was born on September 3, 1997.
She was diagnosed with a Pervasive Developmental Disorder-NOS in December, 2000.
On June 28, 2007, she was diagnosed with Isodicentric chromosome 15 & Autism Spectrum Disorder.
I want to share one of my most precious moments with my daughter to honor her and all the other sons and daughters who triumph through autism everyday.
Jim and I use to take turns dropping the kids off at school and picking them up. This year they starting riding the bus together. I'm blessed with this wonderful memory from that time we spent together in the morning. The routine of the morning was to drive Ethan to his school first, then drive a few miles over to Madelyn's school. We'd pile into the car, Ethan chatting up a storm. He'd tell me stories about the dream he had the night before or what he was going to do on the playground later. Madelyn would usually just sit in the backseat making occasional noises and repeating her favorite knock knock joke (knock knock, who's there, banana, banana who, banana peel, hehehe). I know it's not very funny, but it brings her comfort several times a day. It also gives her a way to interact with people and feel connected.
I'd drop Ethan off and he'd say "Bye, Mom, Love you, see you later!" then he'd run like lightening to catch up with his friends getting off the bus. At that moment, I would turn on a CD of Disney princess' low in the background and make my way towards Madelyn's school. I began this habit of sliding my hand behind me on the backseat beside her leg. She sits directly behind me so it wasn't very comfortable, but I wanted to reach out. I wanted to show her love in an unobtrusive way. So, every morning I'd gently slide my hand back there palm up. At first she would push it away or hit it with her knee. Then, after a few days she would try placing her hand on top of mine. Several times she would place it there, then quickly move it away. I could feel the anxiety running through her arm. I couldn't see her, only hear, feel, and sense her. After a couple weeks she was able to lay her hand on top of mine for most of the short drive. On days she was really struggling, I may only get a quick pat, then she would just let it sit there. This was our ritual. This was how we communicated. In her way, she was telling me about her night, her morning, and her attitude toward the day.
One day (etched forever in my mind), she was having a particularly tough morning. She had several OCD mannerisms that had us running quite late for school. I dropped Ethan off, then slowly slid my hand behind me. I was half expecting a swift knee hit. However, she roughly tried to hold my hand about 3 times. I felt her trembling. I could almost feel the internal battle between her heart, her head, and her body. After the third attempt, I heard a soft voice behind me, "Mommy, I love you too." I drove silently with tears streaming down my face. It was an unexpected gift to hear the words we'd been expressing through ritual for weeks.
God bless your day! Remember, you never know what you might get just by reaching out...and waiting...
Posted by Gretchen at 7:15 AM
Expanded Community
This is just a quick update regarding community. I just read my last post from forever ago. So funny to think that since writing that sincere and emotional rant regarding community, I have joined King David's Kids. I am intentionally an active member of a community of families who, like me, have a child (or loved one) with autism. I have found kindred spirits in new friends who share common struggles and triumphs with me. We are all different and that is accepted and even celebrated. God is mysterious in how He goes about healing our emotional wounds. I really do love His sense of humor. I will write more on this in the future. I have renewed motivation to write down my inspirations and insights thanks to Diana Taylor telling her class to read my blog. haha! Again, God is funny how He guides me back to healing and to helping others heal.
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