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Last week Frankie got her cast off. To celebrate we went to the Polar Bear for ice cream. We sat at a picnic table next to the road to enjoy the beautiful summer day. And then, I experienced being a "normal" mom for 10 minutes! What is a "normal" mom experience? I was able to sit and enjoy sitting and eating ice cream with both of my children. That is it. Just being able to sit and enjoy for 10 whole minutes was an experience worth writing about!
Normally, Connor would be dashing to the street or around the parking lot to look at cars. He would not wait while Frankie finished. I would have my hand tightly around his forearm and holding him onto the bench. But none of that happened! He happily ate his ice cream and waited while Frankie finished hers. Wonder of all wonders.
Whoever said happiness is in the small things was right!
When Connor was first diagnosed, several people suggested that I would be going through a grieving process. I didn't get it. Why was I going to grieve? My son was alive and he wasn't suffering from a terrible illness. I just put my nose to the grindstone and got to work finding how to best help him.
I didn't cry when he got diagnosed, or even after some time went by. In fact, I didn't cry until just last year, when Connor was five years old. I was at a Burger King play place with a friend who also has a son with autism. Connor was running back and forth doing his usual thing: making noises, not paying attention to where he is running, and being in his own little, albeit happy, world. He frightened a younger girl and her "bigger" brother was getting into Connor's face to protect her. Connor didn't care, he didn't even notice. The father noticed, the other patrons noticed, and I noticed. I tried to explain it in a few simple words to the little boy and his father. I took Connor by the hand, left, and cried my eyes out all the way home.
I haven't cried since. Some tears may come to my eyes, but I push them back. I am afraid of what will happen if I actually let them go - I've just got to keep holding it together the best I can. If you know me well, you know that I am a bit of a control freak, and crying is losing control to me.
But I did learn the power of grief that day. It is mourning the loss of playing as the other children do at the dreaded fast-food-play-places of the world. It is the mourning of friends calling for play dates. It is the stab in the heart when other children and their parents look at your child and then you with "that look". It is realizing that you don't do so many things just because it is too hard. It is mourning the loss of what your child could be able to do without autism making it harder. It is your heart breaking when their brother or sister struggle with their part in the family. And you grieve every single day.
I guess you could say I was in denial about the grieving process. And I know, denial ain't just a river. But that will be a thought for another day . . .
Today I was thinking about my need to connect with my family, friends and the world. I started thinking about this after reading the heart-touching comments my cousin Kathy left the other day. It is attached to the Summer Pain posting. Give it a read, I am sure it will touch you too.
I think that parents of children with special needs acutely feel the need to connect with other parents in the same situation. Parenting a special needs child can be isolating, demanding and just plain stressful. It helps to know that you are not alone. That you are not the only parent out there living a life that you never planned for.
So thank you Kathy for touching my heart with your words. And thank you to everyone reading these words for taking the time to hear me.
I try to remember that there is only one today. Sometimes it is hard to know exactly what to do to make the best of my one today. I keep worrying about tomorrow. Or thinking tomorrow will be better because I will have my act together, I will have more time, or somehow magically everything will fall into place. But isn't that a total waste of my one today? Guess it is time to get off the computer, grab the kids and head out somewhere beautiful in nature. See you. And, remember, you too only have one today.
We wait all year for summer - no coats, hats, mittens and zippers to add ten minutes to our morning routine. We can go to the park and zoo whenever we choose. You see kids everywhere you go. And that, my friend, is the painful part of summer.
We just spent a week at the beach with wonderful weather. Families were all around us enjoying the water and sand. I watched the toddlers and preschoolers do things my six year old still cannot accomplish. (However, we were thrilled this year, as this was the first year he didn't eat any sand!) I watched parents sit on their blankets with a watchful eye on their small children, while I had to stand right next to Connor in what I call "hyper-vigilant mode". You just never know what he will do and you can't be more than a few steps from him, especially near the shore of Lake Michigan.
I try, I mean I really try to not let this get me down. We are so blessed for all he can do. Who am I to complain when other families have it so much harder? It is just sometimes, to put it politely, I want to kick autism right in the backside, hard.
Even though my brother has autism, I still love him. He teaches me things about cars, but I never remember. I try to teach him new things too. I wish he didn't have autism.
Frankie (9 years old)
Thank you to Chris Barry, my brother-in-law, for encouraging me to give blogging a whirl.
Since my son was diagnosed four years ago, our life has not been the same. And, I guess, it never will be the one I imagined. That doesn't mean it is a bad life, just different. Very different, exhausting, isolating AND inspiring, encouraging and life changing. Who knew? Not us.
