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.

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

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.

Community

Let me debunk the myth that all parents who have a child or children with disabilities are searching for other parents of children with disabilities to befriend. Don't get me wrong, I know several parents of children with autism or down syndrome, etc. and I like most of them. Here's the deal. Being a Mom is only one aspect of who I am. It is an important aspect that takes priority over many others, but it is not all of me. I am still an individual who enjoys certain topics and activities and I seek to spend my leisure time with people who enjoy the same. I do not choose my friends based upon my kids' friends (though it is nice when their parents fall into the above category). I do not even believe that my main community of support should be other parents dealing with similar issues. I struggle enough with being selfish with Madelyn's autism. Let me unpack that a bit. God has used Madelyn to teach Jim and me many important lessons about love, patience, joy, purpose and surrender. Most of these lessons are difficult and we often need refresher courses. The thing is, we are transformed through our interactions with her. I know if we were more generous in sharing Madelyn rather than buffering people's exposure to her, they too would be transformed. I believe an important part of Madelyn's journey while here on earth is to teach others how to be more like Jesus. Now that sounds warmer and fuzzier than what it actually looks and feels like. Even if I did want to surround myself solely with people who have a relative with autism, tell me, how would that help and support Madelyn in her purpose to be here? How would she be able to teach others how to treat her and allow others to teach her how to treat them. Though the incidence of autism is ever on the rise, the last I looked around, those of us without autism are still in the majority. It is a difficult thing to trust community to be loving and kind to you and to your child. I know that we have been discriminated against for having a child with autism. This discrimination did not happen out of meanness or even on purpose. It happened because often parents choose friends and/or small groups based upon who their kids want to hang out with. Madelyn has never had one child much less children intentionally seek out her friendship outside the confines of Bible class. I understand that. Their behavior makes sense to me. In fact, I am amazed by the handful of tender girls that embrace my daughter and show her great kindness at church. The problem is when parents choose their community based upon the friends of their children, we are not chosen. In fact, we usually do not make the list. I am not lonely, so do not read this as an attempt to make new friends. Read this as an attempt to challenge you and convict you to expose yourself AND your children to individuals with disabilities. Sometimes it will be awkward and maybe even embarrassing for you or your kids. I promise you it will be worth it. I promise that if you allow God to use these individuals, you and your family will be transformed. We all have a purpose that was knit into us as birth. I believe one of the important roles people with "differences" or "disabilities" play in our lives is what I call "Jesus teachers", because they teach us to be compassionate, to simplify, to be thankful, to be faithful, to be forgiving and most all, to love. These are precious lessons that come straight from the heart of God. My family is deeply blessed by Madelyn, but we are also blessed and transformed by all you "normal" people. We need you and want you in our lives. Inviting you into our lives is just as scary to us as it may be to you. It is hard to stop protecting people from important social and spiritual lessons.

I fight the urge to edit my own work. I want to remove my sarcasm. I want to remove the sentences that could be misunderstood. However, their removal would also signify an extraction of some truth.

The Gift

We began a new stage of our journey with Madelyn this week. She received the "gift" to all adolescent females. Of course, our immediate reaction was, "how can we give this gift back?" This question is true on so many levels. Level 1: Madelyn does not have good enough personal hygiene to handle this gift. Level 2: Madelyn does not understand the taboo nature of the subject and may at any moment share the information with anyone. Level 3: Madelyn can never (should never) have a baby. I was and am slower to acknowledge level 3. Madelyn is the one that brought level 3 again to my attention as she told me that since she was now a woman, she could grow up and have two kids, two boys. She chatted away and told me how she and Justin Bieber would get married and have children. What do I say at that moment?

As I think about this "gift" I realize that it feels more and more like a present someone buys for a friend who is pregnant and when they deliver the gift they learn the friend had a miscarriage. Madelyn's body will continue this cycle of inappropriate gifting for the rest of her life. And, as her mother, I will be the one ensuring the gift never arrives. I will be the one at the door that tells the friend a miscarriage has happened and that the gift will only cause more pain.

I looked at statistics regarding prevalence of sexual assault of people with developmental disabilities and found the numbers to be as high as 90% by some studies with 39-68% of females being assaulted by the age of 18. Sometimes I feel like a gatekeeper to an area much to vast to cover. I realize I can only do my best. It is all pretty overwhelming to consider...these are the days when I am thankful that my life keeps me too busy to spend much time contemplating the future. I am quite certain my worry of it would not change or stop a single thing.

For today, I will hug my daughter. I will pretend to be BatWoman for a few minutes. I will join her in many rituals that bring her calm. I will do all these things while ever watching what may come to "the door".

I am that Mother

I am that Mother. The mother of the child people pray they will not have. I think about that sometimes...
At times, I desperately grieve the child that died when Madelyn's autism was born. I have a daily reminder of the child that passed away. She continually slips through my fingers.

Other days are filled with routine and I live the life that is before me without pondering what could have been or what is, I just do.

Then there are precious moments (at times whole days) when Madelyn's purposeful presence in my life is clearer than anything else I know. I am reminded of my relationship with God. I always love and have faith in the Trinity. However, I do not always draw close to them. I do not always allow them to influence me. I believe my stubbornness is at least partly responsible for the people God has placed in my life. I have this daily reminder of how unlike Christ I am.

On those days when I allow myself to be changed by Madelyn, I feel a greater peace and understanding of love than I believe other people (without a Madelyn) can ever grasp. My salvation relies on Jesus but it is nonetheless forever intertwined in my relationship with my little girl.

I think we all have someone or something that we continually struggle with in our daily attempt to love like Jesus. We choose moment by moment whether we will act human or as God. To be human is to act through and depend upon God. To act as God is to do things of our own volition (control). I am thankful that God loves me enough to remind me daily that I am human. I pray that I will choose to see His reminder. For as I fully rely on His love, compassion, patience and wisdom...I am offered glimpses of a world turned upside down and I am not afraid.

Raw

Today is hard and to write would be emotional vomit.