special needs parenting is hard. sitting still is harder.

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The on-hold music goes quiet at the precise moment that I lose my cool.

The kids have been chasing, climbing, pushing — mostly laughing but occasionally crossing the line between roughhousing and fighting, for a solid 15 minutes, and I’m not sure what I’m thinking, trying to make a phone call while simultaneously preventing them from injuring one another.

But I make the call anyway because I’m apparently a glutton for embarrassment. Or something.

Isaac!

He’s hollering like some kinda giddy, crazed person and I’m desperate to get his attention so I yell his name at the top of my lungs… right as the assistant director of the kids’ preschool picks up the line.

::face palm::

Um. Yes, hi, this is Dana Butler and I’m yelling at my children.

She knows me, so she cracks up laughing.

This isn’t an atypical scenario lately. The hilarious thing is that several days ago, I kind of microblogged on Facebook. Shared how much my kids are changing, how I’m enjoying their relationship with one another, how their personalities are unfolding and they’re maturing and I’m seeing more and more light at the end of the Parenting-One-Strong-Willed-Little-and-One-Special-Needs-Little tunnel.

And in the days since I said that stuff out loud? Um… yeah. It’s been hard.

They’ve argued with one another and been unprecedentedly disrespectful to me and I’ve been at the end of myself by the end of pretty much every day. Even on the days I don’t end up raising my voice at them, I’m still exhausted by the time the sun reaches the top of the mountains. Stretched excruciatingly thin.

And yes, it’s the combined intensity of both of my kiddos that wears me out, but truthfully, so much of it stems from Isaac’s unique challenges. Communicating with him, and helping him process, digest, and respond to said communication, is this utterly exhausting, never-ending, all-day-every-day struggle.

I’ve told Stan and a couple of my close girlfriends lately how tired my heart often is, how one day of motherhood can feel like a marathon, and how I actually think this is a kind of tired that runs way deeper than I really understand. It’s soul-deep exhaustion, and what rises from my depths along with it on days like these is grief.

I imagine this is pretty typical for a special needs parent, eh? To have a series of extra-hard days, for the resulting exhaustion to lead me to this zoomed-out view of our journey, of our notable progress, but also of all the things that still feel so, so hard, that will likely continue to feel hard for the foreseeable future, and for said zoomed-out-ness to result in this thick sadness.

Sadness over the things that are no big deal to a “typical” child that are massively challenging for Isaac. Grief over the reality that our journey with him has been hard, was hard even back before we knew it was hard. Grief over the ways we thought we were “supposed” to parent him back then, not yet having recognized his unique set of needs.

Sadness that accomplishing “normal” things like a trip to the grocery store can take so much energy and forethought and prepping and processing with him and even with all that work, we might still end up dealing with some level of a meltdown.

And yeah, in many ways things are much easier than they were 8 months ago. But on any given day this whole special-needs-mom thing can drain me beyond belief.

In the spirit of trying to paint an accurate picture for y’all, let me clarify that I by no means feel this acute sadness all the time. I laugh with my kids. We dance and tickle and talk in silly voices. We read books and play with play-doh and our life together is laced with tons of fun.

It’s just that the un-fun moments are still frequent, that communication with my sweet boy still so often takes everything out of me.

And between facing these realities and the other internal work I’ve been doing lately, I frequently find I’m this giant, yawning abyss of aching need.

I end so many days drained dry and no husband or close girlfriend or other human being can meet me in the depths of my emptiness. Sure, they can listen (and they do it so well), and they can be safe, compassionate sounding boards for my pain, and the value of those relationships is absolutely inestimable.

But at the deepest level of my grief, of my sense of loss, of my gaping need, none of their hearing me or resonating or identifying or validating can meet me. Can really, intimately meet me in the ways my soul longs for.

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I sat down tonight and pondered for a good half hour whether I really wanted to write or not. Whether I needed to write.

And I think I came to the conclusion that I needed to let some of this stuff spill out tonight because in the outpouring, I re-examine my right-now life through this lens of Jesus, what are you doing in all of these hard things? What are you speaking? How are you forming yourself more deeply inside me?

Writing the way I do forces me to search my discombobulated circumstances and feelings — my joys, my losses, my exhaustion, my vast, bottomless need — to sift through it all in search of this thread that’s woven through all of it: His workmanship inside me.

Because I need to see it — to keep on, and keep on, and keep on fighting to see it — how all these hard things that seem disconnected are actually intricately strung together around me and inside me by His perfectly trustworthy hand.

Not that He’s the cause of all the painful stuff, but that He’s moving and working inside me in the midst of every bit of it. And having eyes to search out the movement of His hand — to try and see below the surface to where the pain and discomfort are carving me out inside and how it’s in that space that He’s tenderly, relentlessly shaping His heart inside of my own — is what will bring connection to all that’s disconnected, will bring hope and peace, groundedness and confidence to where there would otherwise be only confusion and turmoil and purposeless pain.

But inside of Him, none of my pain is wasted. Not an ounce.

And there’s this holy desperation surfacing, this sense that I have got to keep cultivating a willingness to settle deeper into the fellowship of His suffering. Have got to find the fortitude to be silent and still and just. sit. with. it — this desperate, empty, aching need — instead of running from one thing to the next, compulsively grasping to fill it, or mute it, or numb it out.

And y’all, it is SO uncomfortable, sitting still with my smallness, my emptiness, my neediness. But it’s only when I’m willing to sit with it, to really feel the ache of it, that He has room to come in and meet me intimately, at the absolute, utter, gaping depth of my need, the way my soul longs to be met. To be understood. To be held.

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Thanks for bearing witness to my processing of my heart tonight, my friends. This feels so personal — maybe almost too personal, even for me. But my prayer is that some piece of what I’ve shared here brings light or clarity to a bit of your own journey with Him.

Love y’all, and always so thankful for your presence here.

~me

This entry was posted in anxiety, Attending to His Presence, Grief and Loss, Learning Authenticity, Marriage, Ministry, misc. walking with Jesus, Parenting, special needs parenting. Bookmark the permalink.

15 Responses to special needs parenting is hard. sitting still is harder.

  1. Alia says:

    Love love love you friend.

  2. I think the first 4 years of my blogging were cheerleading blog posts as I moved through similar challenges. I’ve been where – and some days I’m still there but different. One of mine had/has CAPD and one of the symptoms can be not hearing tone – and with boys and communication – tone is so very important. He’d come home from school emotionally fraught. We’d scoop him up and put him back together. I think we’re both fighters – God knew we would be – and, believe me, it does make a difference in the outcome. Soul deep exhaustion where only God can revive and refresh – He does. He will. He will scoop you up and put you back together so you can take care of one of his very favorite children! Praying for you, Dana – that God be with you, wrap his shalom around you – sustain you – and let you know he’s got this! Praying you have peaceful sleep and restful dreams, too.

  3. Katie says:

    so much love to you friend. I know that place of deep aching nothing can ever fill it all need. It’s funny because I was out with my husband tonight and talking about how even though this dark season is still so very dark, I’m no longer this great big ball of aching need all the time. It doesn’t mean there aren’t still needy days when the grief and neediness swallow me whole. there are so many of those days still. But that there is another side, one that I am on the beaches of because I stayed in the ache. I’ll hold hope for your heart friend as you abide in this place of excavation. <3

  4. Dawn says:

    Dana,

    Writing an immediate response, because I won’t write it if I walk away, through tears because I get this deep cry if your heart here. The hard and the glorious that comes from be a mom of a special needs child. I am on the other side of the journey, but still in it, as my girl is an adult. The hills and valleys are sometimes just so different than our atypical children and we still need to live loving these pieces of us. Somewhere in the midst of it, you can get lost in that vacuum, and maybe my response is to just empathize and let you know you are known and understood. Especially by His heart. I am praying for your weary heart.
    Blessings ,
    Dawn

  5. Dana, I love you and am proud of you and am deeply sorry for the hardness and bone weariness of this. And…I see in you such a tender, brave longing for more of Jesus that inspires and encourages and points the way. I treasure you and lift up prayers for you and your precious family.

  6. Angela says:

    Thank you for writing this. God let me see this just at the perfect moment. I know that soul-tired feeling and asking God about what He’s doing in the midst of the hard stuff. I literally found this post less than a minute after praying “God I don’t have a clue what to do with this current situation.” And I still don’t know, but this was very encouraging in a way that makes me think I can get through this one, just like I’ve gotten through the other situations with our son. Even through I’d really rather just like to pretend it’s not happening at all and hope it will go away on it’s own.

  7. Amber C. says:

    Dana, the overwhelming feeling I had when I finished reading this and just sat with your words was this: you are one beautiful human being. That, and I love you more and more as I see more and more layers of this beauty (who knew that was even possible?). The beauty in your humanity, your embarrassing moments and ::face palms, your self expression and the ways you live and tell your story, the ways you love, your desperation. You are one of my heroes.
    Amber C. recently posted…The piece of soul on my skinMy Profile

  8. Thanks for sharing the reality of parenting a special needs child, the exhausting, scary, and sadness that only another who has a child with disabilities knows. While we put on our shiny ‘I don’t have a care in the world’ face, deep inside you wish that there was some certainty and stability that allowed you to be like every other mom who worries about the little stuff in their child’s life – will they go to a good school or find the right mate. But that’s not our story, we have the job nobody wants and love the sweet people that are under our care.

  9. Pingback: Pursing self care and asking for help (in which we make some changes) -

  10. “Because I need to see it — to keep on, and keep on, and keep on fighting to see it — how all these hard things that seem disconnected are actually intricately strung together around me and inside me by His perfectly trustworthy hand.”

    i can relate to your ache on so many levels, dana.
    thank you for the sacred gift of your vulnerability, sweet soul.
    tanya@truthinweakness recently posted…When Healing HurtsMy Profile

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