17 children. I think. I don't know. And there were many of them on the spectrum. How many? I don't know. All I do know is there were a crowd of people at my house. There was confusion. There was pizza sauce on my walls and good couch. There was happiness. There was even a striptease. And I loved it.
It brought me back to Sunday dinners at my mother's house. It thought back to the holidays of total chaos that I adored. I am the youngest of 4. My siblings all basically had children at approximately the same time - my one sister through foster parenting and eventual adoption of my beautiful niece. I was a kid during this time.
But I loved the fact that amongst the chaos, one Christmas the torn wrapping paper in my mother's living room must have measured 2 feet high and one of the kids was walking around with a bottle of scotch meant for someone else. There was laughter. There was such joy.
Family gatherings haven't been quite the same for us. We have the only young children in the family right now. And then, Zach doesn't quite put on the show like expected. I feel that we let others down; they go out and get these presents that we have to entice Zach to open. He doesn't show the reaction and gratitude of his sister. It took us so long to get him to understand to take the paper off. Now, he just rips with abandon,sees the surprise and tries to figure out what it is and what function it serves.
But then there was this past Christmas 2010. He finally showed interest in opening up his own presents. I cannot tell you how stinking excited I was. It's one of those things you just take for granted if you don't have a special needs child. And then it happened. I was pulled into a bathroom - pulled away from watching one of my son's precious moments. I was told a story of abuse and pain. My son's moment continued, and I wasn't there to watch. Cousins and aunts and uncles were there, but they didn't understand the significance. I only have so many of these moments, and someone selfishly took that away from me. Yes, this person was in pain. No, I didn't cause it. Why did they have to choose that moment to tell me? Why couldn't I just have that one freaking moment of joy in my life. All our joys are so hard fought for. Why does everyone continue to expect me to solve their problems? Can they not see we have ones of our own, ones that I cannot handle?
That's family and autism. You can watch me as much as you want. You can even say you love me. You can watch Zach. You can read my words. But, my heart is only understood by a few others out there. This is a case where blood being thicker than water does not apply.
It's so hard when I see a newly diagnosed parent going through this. It breaks my heart, it hits so close. It makes me relive that place all over again. I had some friends over the house today with kids the same age as mine, but neurotypical. They are so flippant about things involving their kids and what we are up against. I realize there is just no way to describe the heart of a mother when faced with things like which preschool to choose for your nonverbal child. You just have to live through it to understand the pain, the torment, the guilt, the fear. It's so freaking unfair. I feel so connected to all my fellow ASD mothers that barely know me because no one else will ever understand, it just isn't possible. Just us. Connected by that weight on your chest that never seems to go away, that nightmare that you never wake up from but get used to facing.
Part of that nightmare is that of the ever-disappearing family. (I stole that from a facebook friend.) I was always so proud of my family. I knew we weren't the Waltons, but I really felt like I was dealt the best hand possible. I had two parents who loved each other, siblings with nice spouses and beautiful children. We got together at holidays, on Sunday's at my moms, for birthdays, and sometimes just to get together. I always felt like if I really needed them they would be there for me. The fact is, I was fiercely independent and really didn't need them much for many years.
And then there was diagnosis. These past few years my life has felt like a round of musical chairs, where I thought I had the last one, and it was pulled out right from underneath me. The thing I always valued so much in my life felt like it was an illusion. I could see them, hear them but when I went to reach out to touch them, I reached right through them. I cannot ever begin to tell anyone how hurt I have been over this. And I am sure my family would tell you how much I suck if you were to ask them, and they would probably be right. I do suck. In so many ways I cannot begin to count. In so many ways I never knew, until I had this little life that depended on me for so much and I began to fail him.
So where are they for him? Hate me, turn your back on me, but my kid? I just will never understand that. Why won't they spend time with him? Visit him? What about Sophie?
Let me say that Zach's grandmas are top notch. If there were ever two women who loved their grandson - it is them. And for that I am so happy. But those days of family get-togethers, with laughing and games and sharing, yeah, my kids won't be having much of that with my family. They can say it is because they don't have kids my own age, and that is probably right. But I was a single teenager, twenty something year old, without any children, and I made a point to spend time with all their children.
There were movies, museum visits, camping trips, the zoo and endless sleepovers. I don't think they remember. I think it must not have meant to them what it meant to me. I love my nieces and nephews almost as fiercely as my own kids. I miss them. No one wants to visit hysteric Aunt Leanne. I guess I probably wouldn't want to either. But my mother and father didn't raise me that way. You visited whether you liked it or not. Family was family and we supported one another. I think about the hospital visits, or the nursing home visits, cleaning at great Aunt's house who could no longer do it herself, the endless birthday parties, car rides that took forever to the south to visit people I felt I didn't even know but I was told were my family. Kiss them, hug them. This is your blood.
I am not angry with my family. Anymore that is. Maybe that is part of this acceptance thing I keep on hearing about. But the facts still remain the facts. And my wants and desires still remain too.
So I had a surrogate family over. With their own weird kids like mine. Ones that wanted to be around me and my kids. They appreciated my offerings, tolerated my personality, asked me how I was doing and what they could do to help. Little did they realize that by trashing my house and then helping to clean it up, they gave me just the medicine I needed; the gift of their time, the gift of their presence. For one brief moment, I wasn't alone in our journey. Camelot?
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