To You Moms of Kids With Special Needs

Yesterday was “spread the word to end the word” day – and I just wanted to let you moms know that you and your children are loved! ~Jessica

I’ve watched you incredible mamas of kids with special needs pour your hearts out. Your beautiful, passionate, and honest words have had this “typical” mom in tears.

I’ve read your heart – of the ache that cuts deep, the life shattered into a million tiny pieces, and yet the breathtaking beauty found in unexpected places.

And I sit here with my stomach in my throat cringing at the ways I may have hurt you. The ways I still hurt you. The times when I have no idea how to respond and yet babble the first words I can think of without really thinking, or when I spill gruesome silence and awkward stares instead of a blessing. The times I wrestle with whether to help or smile or just ignore.

And I am sorry.

I hope you know that it’s not because I want to hurt you or desire to make things more difficult for you. Those ignorant comments and thoughtless looks that pierce your heart and hurt for days? or years? They’re most likely completely inadvertent. I either had no idea of the pain I caused, or spent hours in bed stewing over the awkward situation wishing I could make it better.

Truly.

I know not everyone feels that way. I know there are mean people out there that say ugly things just because they can. Some people are just nasty. And then there are others of us with ruler in hand desperately trying to measure our own worthiness against you and your child.

But maybe we’re all like that to some degree?

Every time I think of how I would do things differently. And every time you compare my child with yours. Every time I usher my children away from the uncomfortable differences that are your everyday. And every time you display my inconsiderate comment to others on Facebook or write me off as just another one of those “typical” moms.

You and me and all of us tearing each other down – whether we’re trying to or not.

I hope that we can extend forgiveness and grace to one another.

For I think we’ve all been in those delicate moments when one of our children is shrieking and drooling in the library or throwing stuff off the shelf at the grocery store or going into complete meltdown mode because the boy next to him isn’t lining up the cars perfectly according to make, model, and color hue.

And we’ve all had days (maybe too many to count) when all we know to do is tie the end of our rope and hang on for dear life.

For the conundrum is that my six very normal kids shriek and drool and throw tantrums too. And I’ve felt my cheeks burn to blazing, and my hands all raw from gripping onto that rope.

But I know to you it’s very, very different. Your lows may dig much deeper and the highs may soar higher. There’s this love unspeakable, and yet a countless number of tears that no one else – this side of heaven – sees.

silly boy

Isaiah boy

funny Bella

happy Bella

And I want to help. And I want to say the right thing. And I want to try to understand. But it’s here that I’m afraid. I’m afraid of hurting you more. And I’m afraid that I’ll be your next angry tweet victim. For as much as I would like to, I know that I will never completely understand. But you know that too, don’t you!? And maybe that’s why you feel so alone.

As if you have to fight and battle and build bridges all by yourself.

And here I sit on the other side feeling just as lonely.

But what I want you to know is that you are not alone. I see you. And I see your precious children.

I’ve seen the struggle and the grief and the joys and the breathtaking beauty -

The courage and the intense yet dazzling perseverance.

I’ve seen the fears and the longing for just one hour alone with your husband.

I’ve watched you reinvent a whole new way of cooking. And I’ve seen you cheer because you only have one appointment to take your child and all those extra pieces of equipment to every day this week. I’ve witnessed the cries of desperation when you can’t understand the words of your five year-old or leave the house without tantrums raging or pay the medical bills that keep piling. And I’ve sat speechless as you’ve humbly changed the poopy diaper of your nine year-old daughter. I’ve rejoiced with you from afar over each tiny accomplishment, and witnessed the beautiful way those little (and not-so-little) lives have wrapped around your heart forever. And I’ve seen the indescribable way you look beyond the disability to see the priceless value of the person. Oh, how I admire you.

And with a tear stained face I’ve beheld those tender moments when you’ve held a seemingly broken baby in your arms. When you’ve wrestled between the ache of what could have been and the sweetness of what is.

And there in your reflection I see someone different, yet so much like me.

Lonely. Fearful. Some days just barely hanging on. Hurting. Desperate. So thankful for His grace.

Brave. Compassionate. Finding beauty in the pieces. Warrior. Lover. Friend. Mommy.

me and my Annabella girl

And so I’m wondering if we can reach out and grab a hold of one another. If we can start building together. If we can go to battle on the same team. For that’s what we moms do – isn’t it!? We battle for hearts and lives and truth and little people and what is right.

I see you. Not with pity. Not with despondent sympathy. But with love.

Love – one of your greatest fans

Comments

  1. Very well said Jessica. This “typical” mom feels much the same way. As moms, no matter what our particular situation we do need to stick together and love each other.

    • Yes, Jen. I’ve been realizing how often we put walls up between us, instead of loving each other.
      Sending love your way today. :)
      ~Jessica

  2. I guess that’s the conundrum here. As a special needs mom I want acknowledgement. I want sympathy. My rode is hard. You may be forcing your child to eat vegetables while I’m forcing my child to undergo dangerous sedation and medical tests, endless medical test after endless medical test. You force your child into picking a different shirt than the superhero shirt he’s picked for 5 days straight. I’m forcing my child to endure me shoving his feet into ridgid, uncomfortable, hot, sweaty braces so that he has a chance of bearing weight on his feet.

    You understand the burning face as everyone looks on because your child is melting down in the grocery store. You say “terrible two’s never ends!” But you don’t understand, is that this is the 15th meltdown since this morning. Or that my kid may look 2 but he’s actually 4 and the terrible 2′s really will never end. You’re going to pick your kid up, leave and the meltdown will end, but ours will either never end until there is self-inflicted harm or the child falls asleep.

    As moms we do need to stick together. We do need to love each other and not dwell on our differences. But, that doesn’t mean ignoring them all together. It means acknowledging our differences, our strengths, what sets us apart.

    To many of us special needs mom never get the same validation. We may never hear the word “mommy” or any variation of it. We may never hear “I love you”. We may never buy something for our child and see that extreme excitement in their faces when they squeal and jump up and down thank you. We may never hear “please” or “thank you”. Or hear our children being polite which gives us the pat on the back that we have been doing something right all this time. When we follow the parenting advice, the rule books, the doctors recommendations, they all backfire on us. So to be put in a room of moms of typical children and be told “oh my kid does that” or “don’t worry mine melt down sometimes too” it tends to trivialize what we’re going through. Or when you say, “oh you must be doing a great job, s/he seems happy” when you’ve only met my kid for 5 minutes just seems like you want to get rid of us.

    Maybe you should be looking at us special needs mom with sympathy. Sympathy that our road is hard going. While other parents get to cruise on a newly paved road, I’m off trail trekking over cliffs and hanging on the edge of rocks slipping out under my feet. Look at us with admiration, because we’re here. We’re still holding on, moving forward one step at a time. We’re still engaging with the world and we’re reaching out to you. Not because we’re superhero’s, because we’re not. And more importantly than loving US, love our kids. Love our kids like you love your own. Talk to our kids like you talk to your own. Look at our kids like you look at our own, because your eyes speak miles.

    • Abs – Oh, how I wish I could sit down with you over a cup of coffee and get to know you and your precious child(ren)! I pray that you would see the love and admiration in my eyes for you and your child. And although there is noway for me to ever fully understand your everyday and the many struggles it entails, just as you will never understand mine – I do want you to know that I care deeply and would love to support you in anyway I can. For in so many ways I look up to you as a mom of a child with special needs. I hoped to portray the compassion and love I have for you moms just a little through my words. I’ve added the word “despondent” before sympathy on the last line of the post to help make my intentions a bit clearer. As in, I don’t look at you (or your child) with a pitying, hopeless, looked-down-upon kind of sympathy – but with value and love.
      Hoping we can link arms and keep taking those steps together.
      Many blessings to you.
      ~Jessica

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