What I really want to say

I’ve been pushing down the words for months.  Holding them in, sweating and pounding them out as I push myself on runs, sweeping them to the side, swallowing them with my dinner, and those words have clogged my brain and made me feel claustrophobic.  Lately I have moments where I cannot breathe and I have to stop and stand still, quiet my racing heart and clear my mind.  I stand in the bathroom and let the tears fall silently for a few moments before putting my face back together.  I start to release the valve and then I walk away from the computer.  I have posts in my draft folder titled, “More Than a Housewife,” “Grief,” and “Unexpected.”  I cannot finish them and push publish.  Too raw.  Too much.

A week ago I had a string of days in which I awoke in the early morning hours because of nightmares.  Five nights out of seven my eyes snapped open to register the darkness, my heart crashing against my ribs, the sheets and my tank top damp with sweat.  Images and scenes, worries and fears brought forward so clearly tears pricked my eyes as I tried to get back to sleep.  These awful dreams were never the same, but they all centered on the Roc, except for one.  I’d lost the Roc and couldn’t find him, he was choking and I couldn’t save him, he was a teenager and some boys lured him off the bus and beat him up and he couldn’t tell me who they were, and one dream in which the police knocked on my door to tell me my husband was dead.  I don’t need a therapist to interpret those dreams.

I have been struggling with that baby fence again.  Feeling secure in my decision to close the door on another child.  The years of trying and wishing and hoping and the crushing disappointment of loss too much for me.  I want to move on from these feelings.  I want to stop thinking about it.  I have days when I say NO loud and clear to myself.  This one is more than enough.  We three are good and I have all that I can handle.  I have a few days here and there where my heart aches for the 6 month old baby I would be taking care of today.

I heard, “Wow, I don’t know how you do it.  He is a full time job, and I can tell you work hard,” from the Roc’s spec ed teacher during one of our recent phone conversations regarding his spiraling behavior at school.  It’s been hard to get these notes, these emails, these phone calls from school.  Is he really acting up that much?  Is it so different from last year?  Why?  Is this spec ed teacher, who is new to the Roc, and new to this age group, putting more emphasis on the negative?  How and why is it so different from last year?  Where is the positive?  There is positive about my child, they see it right?  Are they making sure to focus on the positive?  What message is he getting at school?

School.  Sh*t school is getting hard for my boy.  He is struggling, but learning at his own pace.  I struggled to hold onto the positive when we heard all that he cannot do and how far behind he is during our recent IEP meeting.  I am dreading fall conference tonight.  Dreading.  Dreading.  Dreading.  The notes, emails and phone calls this past week haven’t helped.  Homework battles ensue every afternoon after school.  It is so hard to watch him struggle.  Not much comes easily at school and it’s hard on my heart to imagine what he feels like when he’s there.  What his body feels like, and what his heart feels like.  I worry.

Recently, in a moment where I was so full of warring emotions I fired off a string of words to my friends, my autism mamas, my sounding board:

I’m feeling the panic well up inside.  I’m fighting it.  It’s winning.  There is just SO MUCH to teach this child.  How will I do it all?  How can I prepare him for the world.  The smallest interactions with people are so terribly hard for him.  He’s having a rough go at school.  Learning to read is frustrating the sh*t out of him, math is so hard, everything is hard.  Friends?  What friends?  I’ve seen the looks, I notice the avoidance.  Oh my heart.

On a walk at the dog park this afternoon he told me he wished we had more kids at our house and then asked me, “What were you going to name that baby who died?”  Oh my heart.  I thought my chest would explode.  Oh my heart.

This is hard.

This is hard.

Some days I am overwhelmed with all that we are working on right now.  Right NOW.  Actually, many days, no most days lately I am overwhelmed by all that we are working on Right Now.  All the things I still need to teach this child that other children pick up through osmosis.  The school stuff, the at home stuff, the daily living stuff, the friendship stuff, the conversation stuff, the anxiety, the frustration, the….everything.  The small things all the way to the huge.  There are not enough hours in the day.  I waste no time, and yet I do not have enough.

How do I get it done?  How do I fit it all in?

I know there are no simple answers.  Small bites a friend told me.

Keep breathing.

This is hard.

There is so much more to say.


17 thoughts on “What I really want to say

  1. I hear you. And I’m sorry. And I’m sending love. I have had many times a couple of years ago when I could have written sections of this post myself. Because it is hard. But there are times when it gets easier too. Hang in there, okay? Love you.

  2. IT. IS. HARD. I’m sooo sorry for this. For your Roc. For your heart. For your life. For your Loss. There are no words… only empathy for you today. It is not an easy thing. I’ve been told it gets easier. I hope that is true for YOU and YOUR ROC, and my Gabs. Only time will tell.

    But, know that you are not alone. Others of us have these same fears, these same battles, these same everything. And, it doesn’t feel fair. It isn’t fair. But, it is our journey. And, you are not alone.

    Blessings and a light load for you today! 🙂

  3. This hurts to read. It hurts because you –my friend and someone I care so much about– are in so much pain. It hurts because I know your whole family is in pain. The familiarity of these thoughts and feelings, the raw ache…it’s all too much.

    I know that, intellectually, we each know we are not alone in these thougths, feelings, fears or experiences. Yet, when we stand at the sink with the tears falling like rain, it is lonely and feels so overwhelming. When you are in those moments, I hope you will feel the love of so many who care about you holding you up, giving you strength to carry on. Love you, my friend.

  4. Your posts are very similar to my thoughts! Our sons are quite similar and so are our feelings. I shared your post with my husband, because when he asked why I seemed sad and distant lately I couldn’t find the words to explain…

  5. Breathe. Just breathe. A year ago I was mired in really hard school stuff (this is the point at which I first found your blog, and I have been grateful for it), and that hard stuff nearly consumed me as I tried simultaneously to help my son and improve a system. Right now things are pretty good and I can breathe again, even be hopeful and proud of progress made, but I know challenges continue, will continue, in different forms and different ways, that there are jumps forward sometimes and paralyzing setbacks. Joy comes back around too, sometimes shining through the hardest of times, even for a moment. None of us have enough and get it all done and fit it all in. Sometimes the best thing I can do is to let something–something that usually also includes worrying–slip a little so I can breathe, just breathe.

    It is hard. But you are not alone.

  6. I am so sorry for your pain. You must know that you are not alone. We all have those times that it feels like we will not be able to manage all that life has given and taken from us. I have no good words for you, just a big cyber hug. And perhaps some chocolate?
    As for that teacher, I have people say that to me all the time, “I don’t know how you do it…” I think they mean it as a complement, but I always take it the same way – “they’re not that bad are they?” I’m sure it was intended as a positive thing.
    Hang in there. You are an amazing mom. You will get through this. You will be ok.

  7. Pingback: What I Really Want To Say | Oxygen Mask Project

  8. I know this kind of pain. Those deep dark depths are known to so many of us.

    With enough time you will find your way back to the light. Sometimes the steps out just appear and you don’t even realize you’ve found them until you’re half way out, but sometimes you have to build every step yourself, so make sure you have all the tools you might need when the time comes to build those steps (counseling, medication, meditation, exercise, time alone with your husband and friends). Until then, take one breath at time and know it will get better.

    The light is there waiting for you. I’m finally making my way out of my own well of despair so I know this in my heart. I wish there was something that could be said or done to alleviate the pain for you but your journey is your own. I will keep you in my thoughts and hope by sharing what you have you have brought the first rays of light to yourself.

  9. Thank you for being so honest. I understand…not exactly, but I understand in my way, because I’ve had such similar feelings and emotions about my own son. One step, one breath at a time…you’re not alone…

  10. My heart goes out to you. I feel your pain. After two years of stress and anxiety over school & IEPs, and a fabulous summer of exploration as a family, we decided to try unschooling instead. As soon as I made the decision, the stress and anxiety related to school & all it involves, melted away. We have been having a wonderful time so far exploring the world around us, using his interests as a springboard for the next lesson. He has never been so communicative, happy and engaged as he is now. I can honestly say I have never been so happy and content with the direction his life is going. It has been an amazing experience. It’s not for everyone, but it’s definitely for us. I wish you and your family all the best. I know you are exploring your feelings and heart, and that you too will follow the path you are supposed to for you & your family. Thank you for sharing your experiences with others; on this journey, it is so nice to know we are not alone in our travels.

  11. I hear you. There are those moments of share panic when everything seems to be bunched together in an insurmountable tangle. Those moments when you are not sure where the beginning, middle or end is can seem terrifying. There are no easy answers. I’m a grandfather of a five year old autistic boy. I’m very involved in his life and even though I’m not the primary care giver, I sometimes feel those moments of panic and uncertainty about the future.I’m sure that being the parent, it must be a even harder from your point of view. If life has thought me anything, it’s that during these moments, it helps to take a few deep breaths and to try to concentrate on the positive. I’ve found that when I do this my mental focus shifts and what seemed impossible suddenly seems possible. When I manage to shift some of the focus away from the emotions, I find that I have more mental energy to focus on solving some of the problems at hand. I would also like to add that I’ve read some of your blog and from my point of view, you are doing a fine job raising your son. I’m sure that it hasn’t always been easy for you. Be proud of yourself and take pride in the loving caring mother that you are.

  12. It IS hard. It is the hardest thing we will ever do. It evolves and morphs over the years but it is always there. And it’s so good that you blog about it, as hard as it is to put the negative emotions out there – we are all there with you, holding on. We benefit from voicing our own words as much as hearing those of others. Lots of love to you xo

  13. Of course I am late reading htis, but I need you to know I get all of it. I really do and remiding myself to take it in small pieces is the only way Iget through. Otherwise the enormity of it all would paralyze me. ❤

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