Holidays are like any other day to CB. She is "very low functioning" on the Autism Spectrum. In addition, she is diagnosed with "severe to profound cognitive impairments." I don't like labeling her like this, but labels get the point across with parsimony to people who do not know her. Please trust that I see her as more than a label, and I see her strengths. In addition to her strengths, there are challenges. Holidays and birthdays are meaningless to her, and often stressful - crowds, traveling, foods she won't eat, expectations. Since CB's diagnosis at age 2, special occasions have always been marbled with threads of sadness accompanied by varing levels of stress. With her visiting her Dad during many of these major holidays, it has allowed me to forget the sadness, the emptiness, forget the wishing, the wanting, the missing.
The truth is, since adding three more children to the mix; I have been able to distract myself from the all encompassing World Of Autism and the loss that comes with it sometimes. Three children under the age of 4 keep you busy and it's quite easy to focus on them and their "holiday excitement" while CB "stims" in the background like moving wall paper. She is comfortable. She is alone. That's how she likes it. I don't want to like it that way too, but breaking into her world and trying to have her value what I do has been difficult... impossible.
So, I distract myself with the neediness of the other three. I distract myself from missing her and the rejection I feel when I try to engage with her. She wants to be ignored, and over the years I've fought not to oblige, but it is difficult.
I am not proud of all I've confessed. But I am trying to be honest with myself and my readers. Why I expose these less than Pollyanna feelings in public is not just for catharsis, but also to say this: I feel myself coming back to life with CB. For instance, we did extramural bowling this fall. Together! Just us. And, this Easter, I made her an Easter basket for the first time in almost a decade. Though she was not here, I saved it for her. Her birthday is next month and I find myself planning a low key party. The last party I threw for her was her fourth. At some point, I stopped. I didn't stop caring, I didn't stop loving. I stopped hoping. I stopped trying. I started buying into the rationale that "she doesn't care anyway" or "she wouldn't notice one way or another." These were defense and coping mechanisms. Maybe she doesn't notice or care. Maybe she does. But in giving up on these small things, I gave up on one important thing... I stopped having faith that she's IN THERE.
CB, I am sorry. I won't give up on that again. Ever.
I missed you this Easter.
I missed you.
I miss you.
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11 comments:
My God you are amazing. I so hear you. Nothing shameful...just real, real, real. "To err is human, to know that you get tired and screw up and then learn from it and carry on is freakin' DIVINE."
As mothers, we all have our shut-down, walk-of-shame moments, so you are not alone in this. It's one of the perks of raising children, isn't it? Thank you so much for such a lovely, honest post about your relationship (and sometimes lack thereof) with CB. You are truly inspiring. Easter is such an appropriate holiday for such a self-discovery and new outlook. Blessings to you and your wonderful family.
Jeannie
You never gave up, you simply let things be for awhile. Sometimes we could all benefit from just letting things be. But how great that you can now celebrate being re-energized about your relationship with her!
You are amazing. Its hard to give each of your children everything you have, when each child needs something different from you. So honestly when one kid cuts you some slack..you take it, it may not always be right to do, but sometimes motherhood can just plain wipe you out, can't it?
So remember this:
Rule of Motherhood #118 "The squeaky wheel DOSE get the oil; that's God gave kids a great set of lungs at birth and the ability to be more protestant than any marketing add on t.v.
Rule of Motherhood #12 Once you have recognize something YOU feel you need to change (usually no one else notices), have yourself a good cry over it, then grab a pen and a pad and figure out how to change it.
Rule of Motherhood #103 Guilt is a Mom's kryptonite..It stops us dead in our tracks and eats us up from inside..kids manufacturer the purest and strongest forms of this substance..and know all to well how to use it!
Rule of Motherhood #1 Your a KICK ASS MOM!!
Alicia...that was from the heart and made me cry reading it. I am sure your daughter can feel your love for her. It's never too late to keep trying. You are a great Mom!
Your honesty brought tears to my eyes. Thank you for sharing this and for reminding me that we are not the superheroes we'd like to be. We are all just human...doing the best we can.
For the record, I think you're an awesome mom. :-)
Such a beautiful, heartfelt post. And so is CB - thank you for sharing the photo.
What an amazing thing to post. You saw yourself in a moment in time for just what the moment was. Not good or bad or shameful. Just a moment. Rock on!
This makes me cry because it's something I can so relate to. You have had the sense and are honest enough and generous enough to share these feelings with us, your readers, who now can breathe a sigh of relief. Because unless we're insane (and apologies to those this offends), I'm certain that all of us with severely disabled children feel like you do at least some of the time. I'm thrilled that you're able to "go back" to missing your daughter -- I think you're wonderful.
Great Post Alicia. I'll leave it at that :)
Hope you had a Happy Easter CB. Tell mom I have some pictures for her from when we colored eggs. Love ya!
Beautiful post. Thank you.
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