Susan's Blog

Sunday, August 5, 2012

Not enough

That 22 year sadness is with me today, like yesterday. Nat came home with his light dimmed. He went to sleep right away. He didn’t want to do anything. Still, he watched and waited for me on the porch, to see the moment I came home from my bike ride. He watches for me, then when I pull up into the driveway, he walks back inside without a word. I hear the french door slide shut, I look up, and no one’s there. But I know.

I felt his face today and kissed his rough oily cheek to see if there was a temperature, but there was none. I asked him if he had a headache and he said a sharp, clear “no.” He wore a yellow Tour de France shirt — I went to Paris and all he got was that lousy tee shirt — and his hair was, as always, fluffy gold. He looks like a sunny meadow filled with haystacks under a blue sky. But that light was definitely dimmer. Why? Is he happy with his group home? Are the new staff good to him? Have they taken him on bike rides, for ice cream, or sat down with him to do Facebook? He seems to like Facebook.

But did I even do any of that? He didn’t want to ride with me. Ned took him for ice cream and I didn’t go. I was tired . I didn’t do Facebook with him, I forgot. He helped me with food shopping and he went on a walk with Ned, but it was all as if by rote, not from joy. I admit that I didn’t feel much joy this weekend, either, but that wasn’t because of him. I had slid down a rabbit hole, a pretty deep one, the kind I haven’t stumbled across in months, maybe a year. I wanted to get out of my body, the way you feel when you have a fever and can’t get comfortable. I just could not feel good. I rode 42 miles this weekend and still it took just plain old time to feel kind of like myself again.

This blog post was in me, hollowing me out like hunger. I just keep asking Ned, “is Nat happy? He didn’t seem happy.” And Ned, dear Ned, who always always takes care of me, said, “I think he’s happy.”

I tell myself that we have First World Problems. It’s not like someone is coming to chop off our heads tomorrow, to put it like Louis C.K. My problems are not knowing if my 22 year old glowing yellow son is happy. My problems are that I hated a conference I just paid a lot of money to attend. Or that my back hurts after 23 miles and why do I still gain weight if I ride so damned much?

But they’re my problems, and I should be welcome to them. I’m worried about my boy. I want him to have everything. On weekends like this it is just never enough.


I am moved by your post although I have no words of wisdom or quick remarks to make you feel better. I can say that every time you open your heart and life to us in these ways, it makes me feel like I am not the only mother of a child with autism with the same feelings and worries. I smile at Nat’s triumphs and he seems to have so much love around him, this to shall pass. You all on in my thoughts this evening.

— added by Jodi on Sunday, August 5, 2012 at 8:22 pm

I can’t presume to know what its like for you, but my kids are now 26 and 24 and I hardly see them even though they live nearby (in the same county). When things are ‘normal’ its different too. I was pleasantly surprised that they both came to my art show where I won a 1st lace. I was so glad they were there. It’s not always the case, and I just build that into having no expectations if they will show up or not. But today they did. And then my daughter wants to go out for lobsters. I can’t really afford it. But I did win a $50 prize and the three of us are hardly together, so there we go to Sono Seaport. And it was so nice. So, I know every now and then you have a nice moment with your son. Its so different what you are dealing with because you feel responsible for his happiness. Its complicated. But all I can say is that on this side I capture fleeting moments as well. My kids would usually rather be with their boyfriend/girlfriend, divorced families share holidays with each family, and you capture moments. And its not always what you thought it would be. They are being themselves and you need to let it be sometimes.

— added by Lisa Wilson Grant on Sunday, August 5, 2012 at 8:31 pm

Thanks, Lisa, and also, congratulations on winning!

— added by Susan Senator on Sunday, August 5, 2012 at 9:09 pm

Thanks, Jodi. 🙂

— added by Susan Senator on Sunday, August 5, 2012 at 9:09 pm

I love you, Susan.

— added by Marcia Heist on Sunday, August 5, 2012 at 9:19 pm

When are you going to quit caring if your boys are happy? When is the sun going to stop rising? You are who you are and if you were indifferent to his pain, I would be shocked.

Sure, I’m sure he’s adjusting to the move. I would. And he’s got fewer coping skills that we do. Is there anything you can do to ease the transition that you’re not already doing? I’m sure you’re working on it.

A wise man said, “Dont feel bad about feeling bad.” yes, I carry your husbands wisdom with me.

As for the weight, what do they say about stress? Cut yourself a break. You are beautiful. That horrible conference is done. The money is gone. Just keep moving forward. Keep writing. I love reading your stories, because then I feel less alone.

— added by Janet Bowser on Sunday, August 5, 2012 at 9:40 pm

My heart aches for you in this post. An empty nest, the death of my mom and putting my two black labs to sleep in a one year period drove me to write this poem:

And all the tears
the world has ever cried
lodged in the back of
my throat

Your post reminded me of what that felt like, and I’m sorry you have had that pain!

And I love Louis CK, too

— added by Maripat Robison on Tuesday, August 7, 2012 at 12:46 am

My light feels as though it’s just dimmed. Ben turned 7. How horrible to put it, but the novelty has worn off.
I have a disabled child, who will one day be a disabled adult. I’ve turned it over in my head a dozen ways, but…that’s what it is.
Ben has started to bite, scratch, and pinch.
He was asked not to come back to a special needs camp. Really? We had so put our eggs in that basket. My husband and I both work ft and spent a lot of money to make sure Ben had a fun and safe summer. Then he was told not to come back.
I then found a daycare that specialized in special needs. We went to interview/be interviewed. They told us they couldn’t help us. They’d need to get him a 1:1 and by the time this would be done, he’d be back in school. They also let me know they’ve never turned down a child before. Thanks!
That same afternoon (yesterday) we had our appointment at Children’s with a very practiced Dr. Ben was in such a state screaming and scratching, that she and her medical student seemed quite flustered and couldn’t hit print fast enough to get me instructions for a social worker and the hell out of there. Probably to protect me from addtional scars.
I broke. The ride home sucked, I ate two pieces from a Whitman Sampler (how desperate is and watched HArry Potter. I allowed myself about 2 hours. Then put Ben in his swimsuit and went back to the JCC that had told him not to go to camp, and we climbed in the pool and just were.
I’m still broken, but mending.
I do feel a bit dimmed, but hope to be lit up soon.. hahahah

— added by Jacquie on Tuesday, August 7, 2012 at 1:24 pm

I’m sorry your BlogHer experience wasn’t great–I am glad I just went for Special Needs day (and got to meet you!).

I smiled when I read of you wanting Nat to have everything–because all parents want that for their kids, right? Especially when their child has special needs and “everything” is out of reach unless he or she has lots and lots of help and resources.

I hope you’re a little happier today and that your problems seem a little more manageable. And that Nat seems happy–is happy–today.

— added by Vickie on Tuesday, August 7, 2012 at 1:26 pm

You didn’t leave comments on your previous post – I was going to send you a “yes, me too” but instead added that long windy note to my “book” of sorts I’m attempting to write once more.

About, coming home…. you can’t. I live 2hrs from my parents and I only lived in that house a few years after Univ so it wasn’t my childhood home. Thing is, I like to go one day in the morning and get there around noon and I’m ready to leave by 9am the next day. 2 nights… I manage… only over Xmas. 3… I don’t do. All 4 of us are like that when we go there. NOT, that we aren’t treated well etc… it’s just not home and we’re “home” people.

I suspect the very same happens with Nat. It isn’t home anymore. It isn’t his space and like me at my parents he’s uncomfortable. My MIL lives next door and b/c it’s part of our daily lives to wander in and out both houses (and the rest of the farm) I’m totally comfortable there… ironically not at my parents home. BUT, we don’t stay overnight… we leave when we’re ready to go.

Nickel’s worth… shorten the visit to one night or don’t have him stay over at all. Pick him up, go for a bike ride, Starbucks or a movie or the pool or… but pick one activity around 2pm. Supper around 5 to 6 and return him by 7pm. You’ll have a better time, he’ll learn to expect the outing and during the week you can give him some options that are available to do with him on the weekend and let him sleep in his own bed in “his” home, not yours.

I suspect he’s made that space “home”, which is a good thing.

— added by farmwifetwo on Tuesday, August 7, 2012 at 4:01 pm

You got it right, FW2, I’m sure! I know, I know, it’s just that it feels weird for me.

— added by Susan Senator on Tuesday, August 7, 2012 at 4:20 pm

Jacquie, our charlie had never been agressive until about 18 months ago. We put Charlie on Abilify and it had helped with his phobias and his hitting. He’s gained weight from it, but he’s calmer, withoutn being doped.

— added by Janet bowser on Tuesday, August 7, 2012 at 6:35 pm

Susan you managed to express exactly how I feel when Billy (20) seems sad or not himself. It is so hard because really their happiness depends upon us, and the choices we make for them. So we are always guessing, and second-guessing. (Right now Billy is at Camp Horizons, and I hear he is doing fine. He gets back Saturday.) I am impressed by FW2’s post; she is probably right.

I know all moms worry about their kids’ happiness. We were laughing at work because one of the guys (who has three typical teen-age daughters) was telling us that his wife said to him, “Don’t you lie awake in the middle of the night, worrying about the girls?” And he said, “No I really don’t. I just worry about me.” So there you have it. I know this sounds sexist, but what really it’s a division of labor — she deals with the kids, he brings home the bacon. Someone has to do the worrying. With Nat and Billy, it happens to be you and me. Thanks for sharing.

— added by Karen Mariscal on Tuesday, August 7, 2012 at 8:41 pm

Susan–the time passes and we always worry about our children–so to answer your question, “not now, not ever.” That is the joy of parenting–even when they grow up and have their own kids, even when they start worrying about us, we still worry about whether they are happy. As we know, all children are special. They all have challenges, so do we. Somehow, we learn and move on, and so do they. We still laugh or cry about worries from long ago, and yet find ourselves dealing with the same kind of concerns, just with younger children.
You are an inspiration to so many–your strength and confidence are admirable.

— added by susan dechter on Wednesday, August 8, 2012 at 5:24 pm