My Greatest Pity Party
Is Cooper my greatest pity party?
Such an interesting question. It was said to me the other day. In anger of course, but there was something behind it. It had some legs on it.
And it truly got me thinking.
Is Cooper my greatest pity party? Hhhmmm.
I am very open that I am heartbroken over Cooper’s autism. It’s gotten better after almost 5 years but, nevertheless, the heartbreak is still there. I am also a tad bit bitter over how my life is different. Which is the part that a lot of people don’t share. But it’s the truth and why lie about it.
I know I don’t ask for help unless I absolutely need it. But in saying that I am thankful for every therapy session, teacher, aide, driver, friend and family member that cares about Cooper. They weren’t joking when they said it takes a village to raise a child. With Cooper it is a village the size of Chicago. Team Super Cooper is stacked. And I know every person wants the best for him.
I also know I don’t share a lot with people close to me. That’s a fact and probably won’t change. I got sick of never getting the reaction I had hoped for. And I am not blaming the people in my life…I’m saying I didn’t know the reaction that I wanted. It got exhausting.
I know that I tirelessly fight to get Cooper the best care. That won’t change ever. I could put him in front of a tv and let him pee in his pants and eat candy and have no stimulation with the outside world. Who would stop me? Honestly. But I won’t do that. I love him to much. So does his team. And we are going to keep fighting and trying.
But pack to the pity. The greatest pity party. Or as I have started to refer to it as….the GPP.
Do I sit around begging for pity? Do I want people to feel bad for me? For Cooper? For our family?
Hell no. The answer is no. So I apologize if it’s coming off that way. I feel like I hold half the stuff back because I don’t want pity.
My stubborn ass refused to get a diagnosis until Cooper was three because I didn’t want pity. I didn’t want help. I thought I could fix him and do it all by myself. I thought if I kept him and us hidden away he wouldn’t have autism.
I don’t tell people half the challenges that Cooper’s autism brings. The enemas, the whining, the exhaustion, the money spent, the time spent. Nope.
So, I say no. Not in the slightest.
I have chosen to share my life with the blogging world because I know I am not alone in what I feel. I want other moms to know it’s okay to be sad. It’s okay to hate the hand that was dealt to you. And then, get up, and laugh and bring your kid to some damn therapy.
What else.
I don’t feel that autism is a gift. I know my life is different. I know my life is harder than some. Not most, but some.
I know that my list of unknowns about Cooper’s future FAR outweighs the certainties.
I know that I choose honesty. And to be humble and caring to others that are struggling. I know that I can laugh at myself and laugh at Cooper.
I know that I choose to give support to other people.
And I choose to accept the help that is given to me. (I’m working on this one. I’m no saint.)
And I know that every single damn day I wake up with a smile ready to take on autism. It’s a conscious decision that I made. I spent many a days and nights crying. I don’t do that anymore. I chose to TRY and be happy. I also made a choice to keep fighting for Cooper and for him to get the best care in the world.
And lastly, I decided somewhere along the line that I will have to sacrifice my needs and wants for that. Does that make me a saint? Nope. That makes me Cooper’s mom.
Every day I wake up happy. It’s a gift I guess. And thankfully that gift was passed onto Cooper. Every single day is a new day for him. It’s this joy I can’t even describe. Imagine not seeing someone you love for months. And then you wake up (at 4 am) and you chatter to yourself. And then over walks the person you love more than anyone else in the world. That is Cooper every single morning when he sees me.
His face lights up he jumps and flaps and squeals. It’s kinda the best feeling ever. Its hard to even be mad about the 4 am wake up call. And then you get to snuggle for an hour in bed.
I get down about Cooper. There is no denying that. There are times when I think I can’t do this. That I don’t want to do this. That I don’t want an autistic kid. I say things out loud that should never be said out loud. And I will ugly cry because my kid didn’t take a school picture. And he can’t go to a birthday party. And he can’t, and he can’t, and he can’t.
And, I don’t think Cooper will ever talk. I am so far past that it’s ridiculous.
But do I want your pity?
I honestly laid in bed thinking about it last night. And on my walk to work. And as I sit here right now.
Such a strong statement.
The answer is no.
So, in case you were wondering if that autism parent down the road wants your pity…the answer is no. Just be supportive. Go visit. Bring wine or whiskey. And dinner. And bitch about your lives. They will love you.
As long as you know you not alone,my son is non verbal too I often wonder what it would be like to hear him talk
I dream about it at least once a month. I dream that he is talking to me. It’s very sad. 🙁
Never once, for one single second, have you come off as seeking pity … or anything, really. You’ve come off as someone expressing yourself because it helps ease the burden and might be helpful to someone else feeling overwhelmed by messages to BE POSITIVE IT COULD BE WORSE. (Ugh.) I see your love at least as clearly as your frustration, and am grateful for your candor in a time where so many try to present only what’s appealing and easily digested. I love it, and how it eases the loneliness brought about by the Cult of Happy.
Thank you! This comment means a lot!
Great post, it’s always an uphill battle and sometimes the people who say the care, don’t, or actually do you damage. Stay strong, there’s so many of us out there and your voice gives us strength. Best wishes.
Aw!! Your comment made my day. Thank you!
There were some people who said that very same thing to me…I have cut them out of my life. I’m sorry, but no one has the right to heap that kind of verbal shit on you. Some people are martyrs to positive thinking, and that’s fine. Others take a more realist perspective, which is also fine. But anyone who says that the parent of an autistic child is using their kid to get into the greatest pity party ever is an asshole of epic proportions. Remember to have good boundaries, and don’t waste one brain cell on judgemental fu*kers who couldn’t begin to comprehend your pain. If they had to walk a mile in your shoes they wouldn’t be able to take the first step. Chin up…you aren’t having a pity party, you’re TRYING TO SURVIVE.
Amen sister! Survival is my game. And then try to enjoy it and have fun. It’s a tough road to walk. I am all for sympathy and understanding. But I give the side eye at a lot of things too…and keep my mouth shut.
Thank you so much for being honest. I have felt the same way especially when my son was under 5 years old.
You are very welcome!