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Friday, March 3, 2017

Not Alone, But Lonely

A couple of weeks ago I wrote a thank-you note to autism moms about all of the "Invisible Jobs" that we do each day. One of my readers sent me a thank-you note out of the blue. It touched me so deeply in a moment where I needed to be touched. It felt good to be seen and recognized for my work because it often feels thankless. I wanted to extend the thank-you to all of my readers --to recognize all of the little things that we do, as parents of a child with special needs.

If you’ve been reading my blog for a while, you know there are days when I feel incredibly blessed to have been able to be able to care for my children full-time. And now, I am caring for my mother. 

The boys are technically grown, but their lives still require care and management.  I am still their advocate. Autism doesn’t go away when the last one turns 18. There are always therapies, appointments, management of benefits, services and education. 

I am working diligently to strike a balance between letting go and getting Blue to make it across that stage to graduation. Hoping that senioritis doesn’t kill one of us first. His transition into adulthood and college is bound to be something less, than a day at the beach. Woo hoo! Can't wait for that! 

Details. Details.
My life is very full of boring, little, time-consuming details. 
I’m always busy, but not always stimulated by what I am doing. 
I am often mentally drained and prone to be depressed on any given day.
I am seldom alone, but I am often lonely. 

There are days when I am bored to tears of the everyday drudgery of it all --when I would love to pay someone else to be the caregiver to everyone while I go off and have a real life. Perhaps I could travel more, do speaking engagements, focus on my own career-related projects —maybe find myself again. 

The work I do is invaluable and yet, I don’t often feel valued.
Kids say thank-you and then ask for the next thing. 
Mom says, she doesn’t want to be a burden, while asking me to do more each day. 

She doesn’t like the "substitutes" for me. She will go to my brother in California, begrudgingly. She will make the sacrifice when I go away for the weekend while sending the mixed message that she doesn’t really appreciate someone else taking up my time and reminding me, that I have a "family to take care of."  I can’t be running off partying every weekend.

Lord knows I do way too much partying during the week! 

She will accept help from others if it’s absolutely necessary, but she makes it clear that "no one does things like I do." *Huge eye roll!  

She does “see” me more than most people do. She has more time on her hands to think because she’s retired. She shows deep appreciation when she’s in the right frame of mind. 

My mother definitely sees the flips I turn for these boys. She knows that I have more patience with them than she could have EVER had. Kendal for sure would be dead by now if she was his mother. She does tell me that I’m an incredible mother. (But I could do better in the wife department.) 

There are days when I feel that God is blessing my partnership with my husband as we both carry on this work, his in Corporate America, and mine at here at home. God continues to provide. In fact, as the boys become more independent, we have even been able to travel a bit. I am still reveling in our trip to "France" this summer. I hate that we had to come back to reality, and reality has really slapped us around since we came back home. 

My everyday getaways are me sitting in my car —bathing in the sun and the hypnotic quiet.  Sometimes, in those quiet moments, the mental exhaustion catches up with me. Tears began to stream silently down my face. 

My mother has not been herself lately. I’m  not quite sure what’s going on. She can’t sleep most nights. When she hasn’t slept, I come downstairs in the morning and she has a glazed over look of exhaustion. And I know. 

Lack of deep rim sleep can cause all sorts of things to happen to your mind. 
Watching her age by the day.is a preview of my own mortality and aging process. 
Seeing her mind gradually unravel is like watching a bad movie, in slow motion. 
I have no control over the outcome.

I realize that someday I won’t have her in my life. 
I better enjoy each moment while I have them.
Only, some of the moments are exhausting. 
I  take care of her as she took care of me when I was a child.
That doesn’t mean that I enjoy every minute of it.

I wonder what will life look like between now and then?
How many years will I have her?
How will all of this play out? 

A part of me is ready to fly. 
I thought I got my wings when Kendal moved out. 
I could finally breathe again. 
Maybe I couldn’t soar, but I could flap my wings and float around a bit.

In the quiet moments, the weight of everything becomes heavier. 
I am tired. 
No one is as aware of my reality as I am. 

I am invaluable, and yet invisible. 
No one sees everything that I do. 
No one. 
People are too engrossed in their own life's details —with their own to-do lists to be thinking about mine. 

Every once in a while my husband will say something like, “Well, I’ve been paying the bills for all of these years,” and I want to slap him into NEXT year,
“Well, I’ve just been sitting on my ass watching you do it. I haven't been doing a damned thing! Just eating bonbons and sipping champagne," is what I want to say and sometimes I do. In fact, I say much more than that.

He'll say he's kidding, but he's not kidding. He usually says something like this when he’s stressed or when money is tighter than normal. I let it go, but it stings. Days later I find it simmering and I am steaming. Maybe it's insecurity, but it makes me feel less. Even though I know in my head, that I am more. I am so much more. 

My many jobs don’t come with a paycheck or bonuses when I’ve worked extra-hard. I don’t get paid, guaranteed, vacations. There are no trophies or plaques with my name engraved. In fact, there is hardly ever a, “Wow! You are really doing a phenomenal job!” from my employers.  

As much as he loves me and I love him, he doesn’t always say what I want him to say. Lord knows I am far from perfect.  (Well, closer than he is but...)  I don’t always say the right thing. He hates my sarcasm and humor, which I use even more in times of stress, which is like...always.

We can not always be each other’s haven in the storm when we are both elements of it.

(He will hate that I wrote this about him.) 
*Sorry. Honey, I love you and you’re wonderful, but this is my blog and my these are my feelings. I’m allowed to have them, speak them and write them. It’s better than holding it in. Trust me.
   
I spend Wednesday mornings with Kendal. We do his laundry, go shopping, get a haircut or whatever. Only to have him call or text me afterward with one of those zingers, “I’m struggling mom. Why don’t you care?” 
 “You just don’t get it! You never listen to me! You never agree with me!” 
Keeping the boundaries between us is yet another energy drain.

I am not alone, but I am often lonely.

I have recently added actively advocating for my mother to my list of jobs. I badger and spar with her doctors to get the source of her medical issues. None of them have the vested interest that I do. They try to blow me off, while I’m the one who is here watching her fall apart.
Wrong. Answer!
I am not the one.
And so I push. I push hard. I don’t take no or “we just don’t know” for an answer.  

I am not alone, but I am lonely.

My source of energy is when I get one on one, extended time alone with my husband. That's when we really connect. The world stops and we just pay attention to one another. I just wish it was available more often. When it comes to caring for humans, getting away is not always easy.

Most of my closest friends and family are far away, so I don’t get to see them as often as I like. When I’m feeling down, I want to be with the people who know me —all of me, including the ugly parts. And yet, sometimes I am buried so deep in the muck, I don’t have the energy to reach out.

I am not alone, and yet I am lonely. 

And so I go on, smiling through the tears and loneliness of my everyday. Looking for a reason to laugh whenever possible. My sense of humor is my saving grace.

Sometimes I dance alone in the bathroom mirror, or in my car as I wait impatiently for the next time I can get away from it all.

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