Monday, January 7, 2013
Just Know You Are Not Alone
2 years after The Boss Lady was diagnosed everyone slowly evaporated out of our lives. Did we just become too wrapped up in Autism? I don't know. But I found myself having a hard time relating to people who I found dear to me. I would get so tired of the, its going to be oks, why don't you try this? Don't you think all of these therapies are too much for her, she is so young? She is fine you are over reacting. Are you sure she has Autism? Bringing her to people's houses and feeling their anxiety of her having to touch everything. Telling someone she cut her own hair, and hearing well you should hide the scissors, how would she get the scissors? Feeling judged for letting her do something a typical child would never get away with like, pulling every napkin out at the pizza place or sitting under the table while out to eat. The one thing that is said to me that I know is coming from a good place, "I don't know how you do it". It hurts because it is like I am being told sorry your life sucks, how do you deal with that. In all honesty I do it because I was meant to do it and I could not imagine doing anything else.
My way of life became so different. I did not feel like going out even if I had the option to, because I was the only one who could get her to sleep. Explaining, I have to be there at dinner time to make sure she eats enough or to brush her and do her joint compressions. Telling people sorry we don't do Kohls, we don't do the mall. I have to cancel because she had a difficult day or she only slept 3 hours a night for the past 4 nights. I felt like a let down every time I cancelled any plans. Many of the people in my life could not relate. I don't blame them. Some could not understand that I want to be there for her every chance I can because she depends on me, and needs me there for her routine she craves. Some can not grasp that even though it is tough I enjoy caring for her. But this is my life now. Strips of velcro lined my wall, a trampoline in the middle of my living room, marker and crayon on my wall, Grace's creation of the week on the kitchen table, For a while I felt alone. I felt isolated. Then I did something I never thought I would do. I joined Mom's Group at Boss Lady's school!
It was a Tuesday, the first day, I walked in nervous and skeptical. What can a group of Moms really do for me, we talk about our lives blah blah blah go home and be more sad. They all came in, most of them with a smile, but the whole story on their face. All from very different walks of life, which makes it more unique. They went around one by one introducing themselves and speaking of their child's or children's disability. One by one talking about their children with such dignity, power, pride and faith. Each mother moved me as the words left their lips. By the time they were finished I was so empowered by their strength to tell me, a complete stranger in depth about their Super Kids. After we went around, the conversation just flowed naturally. It was beautiful and each Mom beautiful in her own way.
The week after the morning of Mom's group, Boss Lady refused to get dressed, missed the bus, punched me and threw things at me and we were going on no sleep. I drove her to school and dragged myself downstairs to the group. I was in a fog the first 10 minutes as one of the moms were talking about IPAD apps. The school's loudspeaker cued on "Crisis Intervention room 5". SHIT, I thought to myself that is definitely for Boss Lady. I lost it, hysterically crying, sniffling. (you know the ugly cry when you get red and swollen and boogers drip out). The room became quiet and still. There was this energy of empathy pouring out of every single person in that room to my seat. And they just listened to me and let me talk with out interrupting once, nodding. They all understood me and where I was coming from, from only the 4 sentences or less that I said as I was crying. I did not feel judged and most of all I did not feel like they felt sorry for me. They were there for me and understood and JUST LISTENED.
As the weeks went on and on, it was just proved to me more and more how beneficial this group was for me. When the Hurricane hit they all came to my rescue by emptying their closets, their wallets, and their hearts onto my lap. Not even thinking twice. It was admirable. In just a few months these women have inspired and gave me the tenacity I needed to pull through. I am honored to be in their presence and lucky to have them.
I am a true believer in reading quotes and writing affirmations to live by. One Tuesday after group I ripped a piece of paper and wrote "just know you are not alone" and carry it in my car til this very day, an affirmation to remind myself that I have my moms from group.