Tuesday, December 31, 2013

We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

11 comments:

sara said...

Heartfelt thanks to you, Suzanne, for writing this. I have so much respect for how hard you work every single day, and some of the hardest work is getting from one minute to the next. And you're really good at that - what choice do you have, you'd say, and yet, you always choose Janey, that is so obvious in your writing. Such a good mom, it boggles my mind. -Sara

Dena Herbert said...

Suzanne, honey I know exactly what you are going through. I have been where you are and worse with Sarah. I do not no what faith you are, but I put everything in Gods hands. I did not know if I could make it through those years, but with Gods grace we all did. Hang in there honey. Through all the twists and turns there is light at the end of the tunnel. God Bless You and your family you truly are amazing! I will be praying that in the New Year you will be given rest.

Laura Wilson said...

Susie. Breaks my heart to hear this. But I'm glad you said it. False cheer and misguided optimism does no one any good. You are brave. Consider a visit to come see us in Vermont, just you. xxoo

Sophie's Trains said...

Love, hugs and well-wishes. it seems that the worst thing is the screaming- somehow trying to figure out why it happens and how to stop it... But of course that is the crux of the dilemma.
Janey is a wonderful girl, tormented somehow. You are an amazing mother, and a lovely human being. I wish I could suggest a brilliant solution but of course there is no magic pill for that. The only thing I would suggest is take care of yourself. Carve out time into your day for things that bring you pleasure and satisfaction- writing, reading, friends- when Janey is at school. Don't worry too much about the future, it'll get here one way or another. Worrying about it won't do nothing other than pollute your soul.
You have made a wonderful community here and on facebook. You are important to all of us!

Hillary K. said...

Thank you for being brave enough to be honest. You are the first "autism mom" I've run across in a long time who I can relate to...and I've been raising my daughter with autism for 21 years now! Sometimes feeling hopeless is easier than feeling hopeful...but it's especially comforting not to feel all alone all the time. I am terrified of the future, and for us, it's just months away. I appreciate you very much.

Shanti said...

Big Hug!! I look at 2013 and so many other people's posts about 'how far we've come' and I just sigh and think "What am I doing wrong?" My daughter is supposed to go back to school tomorrow and it looks like the snow will prevent it from happening too. Taking it one minute at a time. What else can we do?

Suzanne said...

As Janey screams hysterically this morning, I am reading your comments over and over to get strength. It is so wonderful to have a place where I can be honest. I wish I could right now be with all of you, having some coffee and thanking you in person. Hillary, you brought me to tears. You are where we will be some day. Sara, you brighten so many of my days with your humor and understanding. Dena, I can use all the prayers I can get! Right now I am not at a place where I have much if any faith, but I am always so comforted by those who do. Laura, I am mentally planning a trip to see you as soon as it ever becomes possible! I am so grateful to Facebook for the connection it allows with you, one of the very few people I can say I've known my entire life! And, "Sophie's Trains", what can I say? Your blog and your friendship is a true bright point in m life. Shanti, we will have to take these coming snow days one minute at a time together! I so much understand about the posts about "2013 being such an incredible year of progress!" and I can barely take it. I think that all the time too---what am I doing wrong? I have to think all of us aren't doing anything wrong---including our kids. We have all been dealt a very tough hand. Without each other, it would be an unbearably tough hand. With each other, hopefully, we can all get through it somehow.

Bethany said...

Somethings are too hard, too painful to admit - and, yet, you do. You are brave and committed to love your beautiful, mysterious daughter. On the days we don't have hope, I'm glad we have each other. I'm not sure if it is enough but it is something, at the least, to not be alone. So, today, know I'm thinking of you - not for just a moment as I read your blog and then move on. But actually looking out my window and just thinking of you and your family. I hope you can feel some peace. I'm thinking of you and sending all the light, love, and hope I can.

Shajuan Taylor said...

I finally found a group I can relate to. I have a 3 year old daughter with autism. This week has been very challenging as she has not slept a full night in a week. She wakes up screaming and it scares me because she hypervenilates. Im at a point where im drinking coffee just to stay awake. I love my baby but I hate autism. My oldest daughter went away to college in 2012 and lauryn has not spoken a word since. Even when Chelsea comes home to visit she still doesn't talk. I know I'm all over the place but this is my world now. All over the place. My husband works 12 hours 7 days in the factory so he can't stay up to let me sleep. Right now she is jumping up and down on the sofa she never stops. Never. Its so overwelming I don't know what to do. So happy for you Suzanne that your baby is calm and happy today. Hopefully I will get 2 hours of sleep tonight been up since yesterday.

Suzanne said...

Welcome, Shajuan---it's a club nobody wants to belong to, but I'm glad you found us! It's so hard. I felt like crying thinking of you drinking the coffee just to stay awake in the night. I have done that so many times. I think Janey was also very affected by his brother going to college. That is so hard for our kids---when someone just isn't at home any more and there is no way to explain it to them. I hope you sleep tonight too. I will be thinking of you.

Shajuan Taylor said...

Thanks for starting this forum. It helps to see others going through similar situations and still staying strong. Lauryn is jumping up and down on the bed right now and its 3:08 am in Michigan. I think my body has adjusted to 2 maybe 3 hours of sleep. I hope you and Janey are resting peacefully. Good night.