Wednesday, December 29, 2010

christmas dirge

blank page and

a heart full of pain

hopeful eludes me today

too many sleepless nights leave me edgy


hair-trigger temper and little patience

combined with long winter break

a recipe for meltdowns of epic proportions

mine, mostly

his, occasionally


no time to plan

can't leave his side

nighttime hours exist

only in the pockets between wakings

soothing pains and fears in darkness

daytime stretches endlessly

when I am all to him

for good or ill


family gatherings hold no joy

thinly veiled tolerance

of my boy who speaks

with an electronic box

and limited understanding

one says he's distracting

disturbing, too

so glad to see you

once a year


laughter from other rooms

wraps itself around me

as I sit with him

cradling his pain and confusion

sheltering him from the assault

of too many transitions

strange foods, smells and sounds


traditions long cherished

disappear in wisps

vanishing like the fog

of one's cold breath

too cold, too wet

too noisy

no understanding

too busy and unstructured

to be enjoyed


perhaps we'll try again

next year



Niksmom isn't always so gloomy or dispirited when she writes at Maternal Instincts.  She chalks it up to the stress of the holidays and her son's entirely-too-lengthy winter break— along with the snow which has kept them from their planned activities. 

She wishes all our readers and authors a very Happy New Year.  May we all find peace in its myriad forms.


  1. I know. You know I know.

  2. I am so sorry it's been so hard. I know some of your pain (though I also know yours is uniquely your own and NO ONE can possibly understand the whole of it).
    Ick. Distracting. Disturbing. To hell with them.

  3. My heart hurt to read this. Distracting and disturbing...double ick. I sucked in my breath when I read that. We had someone ask for him to "stop complaining already" (we were invited to a friends house for dinner, so it wasn't family) among a few other lovely words. We left as soon as dinner was over. Bah. Michelle's right--to hell with them.
    Hoping for a return to normal soon and with it, maybe some peace. Hugs.

  4. Thanks, Michelle and Pixie. I almost came back here to white-wash it, but it's real and at least I feel safe in sharing it with this community. I know so many people understand and can relate. This, too, shall pass and hope will be renewed. Just had to make the room for it, I guess.

  5. Beth,
    I am sorry this has been such a hard time of year for you guys. Nik is amazing and anyone who can't see that is a twit. Your love for Nik and perseverance NEVER cease to amaze me.
    Lots of love

  6. Oh, Niksmom. I love you and I love Nik and I wish I lived nearby so I could sit in the next room with you both.

  7. Hugs to you on all of it. I'm glad you shared and here's hoping that Monday comes soon!!

  8. "So glad to see you - once a year." What a perfect reaction to these... disturbing... folks and their ungracious responses to your amazing son.
    Thank you for finding words to express it here. Peace to you and to Nik in the New Year!

  9. I'm glad you shared but wish you hadn't had the experiences that you did/are. Same for Nik. There is always next year but I hope between now and then that 2011 has many amazing things to offer you and your family. When I posted the other day I almost didn't - i felt like I shouldn't be rejoicing over our Christmas when I knew so many families weren't experiencing what we did. We have often been those families too, hanging out in a different room - day after day of dysregulation and exhaustion. I wish for you that one day the pain will ease and your Christmas will be ordinarily tranquil - in whichever manner that it takes.

  10. :( I'm mad at the people at those gatherings. I wish it wasn't like this for you guys.
    (Also, just so you know, I NEVER read anything written in verse. It is a huge compliment to you that I did so here. Because I lurve you THAT much. And it wasn't even painful at all. :) )

  11. oh honey, those people can kiss my ass. but i know it's not that easy. and i know how much it hurts. and i'm so, so sorry.
    never whitewash.
    love you so.

  12. I'm sorry...get togethers should never be like that. ever.
    time to make new traditions. you are welcome at our house for any holiday (or non-holiday) anytime.

  13. So many of us live through at this time of year, every year. The details are slightly different, but the essence... We hear you.

  14. I am soooooo sorry. I wish we could have our own get together with everything familiar, with those who "get it". I feel your pain. I had the same experience, with family. Sitting in the other room, with my mom yelling at me (and I thought she was the one who "got it") to make him get over it already. Hugs to you and Nik. And I agree with those hell with them. You deserve to be in the company of supportive and loving individuals. Here is hoping next year is better for all of us.

  15. Hugs to you. Sorry the holidays were so challenging and hope that the new year brings much more joy.

  16. Thinking of you, and hoping getting back to school has made things easier. It is so hard being in other people's houses, for a lot of reasons!
    Best wishes to you and Nik.

  17. So sad for you and Nik.
    There's a flip side to the public joy over "medical miracles" that allow micro-preemies to survive when not so long ago they would have died. Grief, fear, anxiety, sky-high medical bills, self-recrimination as moms blame themselves for their babies' fragile condition -- these all hit before the baby leaves the NICU.
    Nik's mom has been on her journey as the mother of a severely disabled child for seven years. It's hard, as this post shows. A little understanding and support would help enormously but her own family was rude to a little child. On Christmas.
    The world wants easy answers and Disney endings. Unless Nik becomes a musical prodigy or another Stephen Hawking the world will continue to find him distracting and disturbing.

  18. Jill, your comment stings with truth. BUT, please don't feel sad for me and Nik. There is so much that is good and wonderful in our lives. And, for the record, not ALL of my family feels this way...just one sibling in particular who has some VERY different beliefs about mental health/cognitive impairment/disabilities.
    Nik has come so far from his early days and continues to amaze even his diehard fans with the progress he makes daily. He is a joy in my life which I would never give up and he is a happy child. I know this post doesn't reflect's just snapshot of a very emotionally difficult time for us. But even snapshots don't tell the full story.
    So, yes, there is much truth in what you write, but the journey has been one of many peaks and valleys. The view from those peaks is utterly spectacular.