The Shadow of Special Needs

Shadow of Special Needs

There is a lunch I am looking forward to this week. Not because of the meal, the rare lunch out. Not because of the midday drinking, always treasured. But because of the company. There will be no awkwardness of the blind date of first friend meetings, there will be no question of will she like me, will she want to be my new friend. It will be enough for me just to sit across the table from her and know that she gets it, she gets why I sometimes sit in my car and cry after drop off.

She gets what it is like to be silently struggling in the corner.

This year, the dawning of my daughters’ first in full time school was met with such joy. I didn’t cry tears when I dropped them off. Instead I breathed a silent sigh of relief. I wanted to be free of them for eight hours. I wanted to sit and not have to worry about when the next tantrum is coming, what the next upset will be.

Sometimes I feel like that sense of relief is a bitter seed inside of me, poisoning my attitude. I think people can see it in my face, hear it in my voice, sense it in my soul. I want to cry out to them that I love my children with my whole heart but that there is a part of my that has indeed been broken by it, broken by them.

It’s a double edged sword this world of invisible disabilities. My children will never be stared at because of the way they look. They will never be discriminated against because of what people think they lack. They will never feel the pain of being shunned at first glance for something they can not help.

But they will never be championed for their bravery, for their struggle. There will be no make a wish trips, no ice cream sundae moments to make up for the hard times. And those hard times are there, oh they are there. The pain of my daughter’s face when she can’t break herself of the need to repeat a pattern only she understands… that pain is heart breaking, exquisitely heart breaking.

I want to shake her out of it. Shake her out of the need for that repetition. And sometimes, to my shame, I do take her and shake her. Not hard, not painfully, but it is still shameful because I know it won’t work. That it makes no difference. That if all it took was a shake, she would gladly do it to herself.

So instead, I grit my teeth and don’t give it, don’t change the pattern to accommodate her. Instead I hold her while she cries, and hold back my own tears while I try to comfort her, try to explain why it has to be this way, why she had to try to reorder herself. And I try to ignore the stares of the other parents, try to gloss over there questions of oh is she tired, oh is she hungry because to explain would take a million and one words, none of which I have the power to say.

And i sit in the corner, in the shadows, holding my daughter and looking forward to lunch. With someone else who knows what it’s like to be a shadow too.

Comments

  1. No one could love your girls more than you do and anyone that knows you even a little bit knows that. That sense of relief is not a bitter seed. It is your much-deserved breathing in of fresh air to recharge yourself because of the amount of energy it takes to be strong for someone else. You need to be able to be human also, it’s not enough to just allow everyone else to be.
    Enjoy your lunch. And your eight hours. You deserve it.

  2. I am looking forward to lunch, too ๐Ÿ™‚ It is so nice to have a friend who “gets it. And I love reading your writing about parenting your girls–it beautifully captures the mix of emotions that come with parenting any child, but especially a child with special challenges.

  3. What an honest and heartbreaking post. Thank you for writing it! So many will need to read it.

  4. I think you might be right that all parents have those “bitter” moments. And each of us feels alone in it. I’m so glad you have someone that gets you, that can share that with you. Just remember-you ARE a good mama, you ARE a good person,and you ARE a good friend. I know you’ll take your away time and become even better at all of those things. xoxo

  5. You, my friend are fabulous. Being able to stop and look at this parenting experience and being able to define your feelings and struggles is remarkable. You are an awesome advocate and I know it’s exhausting. I know it’s hard. The way you just verbalized it all… I’m here to hug and share a beverage and listen any time and anywhere.

  6. This is such a great post. I think all parents have moments that are bittersweet but most don’t have to feel like they’re constantly deflecting judgment or misunderstanding. You’re doing an amazing job. Never forget that. Or that you deserve the chance to get out into the open air once in a while, too.

  7. I’ve been going through my own “bitter” phase (I will call it a phase), but I am starting to come out of it…a little. I am even considering having another child, something I said I would not do.
    My situation sounds nothing like yours but I feel for you and wish you the best on your journey.
    Cherish the moments you do get with your kids, and relish in the time you get to yourself. Don’t forget to enjoy both the time with your children and the time apart or you will go mad fighting your emotions…something I’ve recently learned myself.

    Great post and best of luck!

  8. It’s so nice to find people who stand on common ground and understand what you are going through. I wish you and your family the best!

    Dawn

  9. I love when I can go and enjoy time with someone who does not judge but just listens and talks. That makes for a great lunch even when you end up with horrible service and food, lol.

  10. We all need a friend who can just listen and understand! I’m so glad you have someone like that! No one understands where we are in life until they live our life.

  11. I have a severe anxiety disorder, so I understand that inner struggle that some go through. It’s difficult to go to classes, or to act like a normal young adult when you have a mini panic attack every time you enter a room.

  12. We all need a shoulder for one reason or another, its to be lucky enough to find one we can trust will understand and be there, unconditionally. Hope you enjoyed your lunch and your mid day drink or two, we can all use those now and again also ๐Ÿ™‚

  13. What a wonderful post!!! I think their are many parents that feel guilty for wanting to take a small break and we shouldn’t get ourselves down about it. We all might have our reasons…. a special need child, being a single parent, having a large family or a marriage on the rocks. Sometimes we need to take a break and put ourselves first for a moment so we can recharge and be the best parents we can be.

  14. I can’t even imagine what your family goes through. I know that as a mother it breaks my heart to see my children struggle. I would do anything to take it away, but I know that they can’t learn and grow if I take everything on.

  15. Beautifully written – you made me cry! Every parent needs some time away, I can’t even imagine how much harder it is for you. They are lucky to have you as their mom.

  16. I totally get what you are saying! I have 4 kids ages 3-10 and it can be very hard, very tiring. What makes it harder is when my husband expects for the house to be 100% perfect and for dinner to always be waiting for him when he gets home. Oh and not to mention for me to look nice with my makeup on on some dressed nicely. It get’s to be too much sometimes! I love my kids with all my heart as I know you do also, but we need to have our alone me time to keep us sane for our kids and families!

  17. Great post! You are an awesome mom!!! My niece has special needs too, and I love the way my sister embraces her challenges and her blessings.

  18. Wow, excellent post. I’m still a few years off from there, but I can so strongly identify with your words.

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