• Dana L. Butler

getting a little more real about life in the {special needs} trenches

Hey, my dear friends.

I’m here. I wasn’t here for a long time. Not mostly. I didn’t know how to be here. There were times I tried to be, but it never felt– right, I guess. So I wrote a few paragraphs here and there, but never brought myself to click publish.

But lately, so many pieces of my life have been flipped on their heads. So, naturally, utter confusion and discombobulation form the impetus for me to get myself in gear and actually share my current reality with you. Or something like that. Ha.

Truly though, despite all this sudden, dramatic circumstantial shifting, something inside me feels stunningly settled. Peaceful.

I want to try to tell you some things about our lives. Lots more than will fit in one blog post. But even as I type these words, I have to reign in my hand. It wants to sneak to the top right corner of my mouse pad, open a new tab, click over to Facebook, and engage in blatant procrastination. Avoidance, rather. Full-on avoidance.

What I Haven’t Wanted To Say

See, I’ve realized recently there’s big stuff about my life that I’ve mostly wanted to sidestep saying. For a long time.

I mean, I’ve said bits and pieces about this here and there, but I’ve mostly said other things, because here’s the deal: I don’t want to primarily write about special needs parenting.

{There. I said it.}

And the thing is: My life is a LOT about special needs parenting. 

I mean, a. LOT, y’all. 

And there are a LOT of superhero mamas out there who are writing a LOT of things —good, important things — about special needs parenting. I read them. I need them. I’m profoundly thankful for them. I just haven’t wanted to be them.

So, with some exceptions, of course, I haven’t made a huge point to talk about that facet of my life here.

Except nowadays, that “facet” of my life? It is essentially my. life. My whole life.

We’ve known for quite some time now (though I don’t think I’ve exactly said it “out loud” here) that we have not one special needs child, but two. The reasons for my relative silence on Maia’s needs have been numerous and complex, one of them being this acute awareness that my children’s stories are their stories, and I so want to steward those stories carefully while stewarding them is primarily my God-entrusted responsibility.

These days, however, as I find my life still more impacted by the unique challenges and struggles of these beautiful children of mine, there’s this whisper rolling around my heart that I can’t escape: Open your mouth a little more, Dana, and trust me for the right words. Trust me to lead you in what to say, and what to hold close. I want you to quit shutting up.

There’s this hidden beauty weaving itself into my day-to-day, into my insides, that I feel Him asking me to try and unveil here, bit by bit — the intersection where the threads of the gut-wrenching grief and exhaustion of special needs parenting cross the threads of God’s tenderness in revealing Himself in the trenches.

This stuff is raw, which, if you’ve read around these parts for any length of time, you know isn’t a new thing for me as far as my writing life goes, but bear with me while I try and give you a tiny glimpse into our “living room” as of late.

Our Beloved Boy

Isaac is 7 now, in 1st grade, loves reading, music, playing with friends, dancing hip hop, video games, science, science, and more science. It is a blast seeing his interests and passions develop.

Isaac’s anxiety has flared up lately like it hasn’t in a solid couple of years. Or longer. It began a few weeks before Christmas, when he suddenly went from doing great at school, loving it, to showing up in the front office multiple times per day, completely un-okay. Panic attacks, tears, too anxious by far to be present enough to learn anything.

With the support of his psychiatrist and therapist, we pulled him out of school a week and a half early for Christmas break, gave him extra down time to help him settle and regulate, and have been trying to very gradually reintegrate him into school this month as the new semester has gotten under way.

While his school administration has been very supportive, Isaac has simply not been able to pull it off. Long story short(er), we are now going to be utilizing our county’s electronic schooling option at home and keeping him in his brick-and-mortar school with his teacher and his friends only 2 hours per day for the remainder of the school year. In a future post, I’ll talk a bit about our decision-making process there, but bless his heart, Isaac is so relieved.

Our Lil’ Miss Maia

Oh y’all, our sweet Maia Bean. This girl is creativity and fire and fierce love. She loves making art, dancing ballet, and playing with any human being or animal that will give her the time of day.

There’s still very little I can say publicly about Maia’s specific needs. That will come here in bits and pieces down the road. What I can tell you for now is that her special needs impact our family very differently, but every bit as extremely, as Isaac’s do. And that the way Isaac’s and Maia’s unique needs play off of each other, the way they up the intensity level of their relationship with one another — oh man, you guys, they keep Stan and me at the end of ourselves so, so much of the time. To be honest, I don’t think I can put into words how difficult it is.

Another recent circumstantial change with Maia: Pardon my cryptic sharing here — we recently were caught very off guard by the sudden enforcement of a particular policy (one that’s unheard of anywhere else, as far as we can tell) by her preschool, where we’d had our children for 3 years total, and where Maia loved to be — LOVED — with her entire, fierce, fiery, four-year-old heart. Again, long-ish story shorter, we suddenly had 24 hours to make a huge decision, and we were forced to pull her out of her school. We were absolutely crushed for her. Ugh. Y’all. So heartbroken.

Despite being shocking and devastating, the ending of our relationship with Maia’s school has been this simultaneous, totally unforeseen blessing: it’s forced us to see that the finances we had been designating toward her pre-K, we can now put toward this particular type of therapy Maia really clearly needs, but that we couldn’t quite see how we were financially going to pull off. Again, the details of this will have to come down the road a ways, but we are so grateful now to be able to begin to make this treatment happen for her, and we would not have seen a way for this to work had things not happened this way. God’s kindness and provision in the midst of these crises has just blown me away.

My New Reality

The resulting reality though is that I am effectively “homeschooling” my 2 ultra-intense-yet-insanely-awesome kiddos, totally out of the blue. In the last couple of weeks, I have fully stepped down from my pastoral roles at our church, a painful decision to make, but not a hard one, since it’s clear what my family needs and what Jesus is asking me to do. I feel super peaceful about the transition, though the sense of close partnership with my dear friends/ministry partners there is so hard to let go. (We of course remain relationally connected to our church, and I will continue to be a part of the worship team at whatever level is helpful, just without much leadership responsibility.)

In the meantime, s’more honesty is that our family is so tired, y’all. Neither kiddo is sleeping well these days, and Stan generally bears more of the brunt of their insomnia, since sleep-deprivation and my propensity for migraines don’t go well together. If you would pray for Jesus to settle the kids’ hearts, especially at night, and especially in their dreams, I’d be so thankful.

And for me — while my heart is genuinely peaceful about all this change, it is still honestly a ton to process, and our kiddos are, like I’ve said, intense, to put it mildly. My highly-introverted heart no longer has blocks of alone time during my weeks, and I wear out quickly if I’m not ultra-careful and intentional with our schedule. I’d love your prayers for wisdom as I’m basically learning to homeschool, kinda from square one, and re-learning how to practice good self-care in this new season.

Okay, I need to wrap this up today, but I’ll tell you this: I cannot wait to give you a few tiny glimpses into Isaac’s developing walk with Jesus the next time I find some moments to write here, y’all. For all the heartbreak of watching my sweet boy suffer with crippling anxiety and other challenges, the way Jesus has encountered Isaac in the midst of his weakness has been one of the sweetest gifts imaginable to me.

Anyway, more soon, guys. I love y’all dearly. Thank you so much for being here, for your patience and grace when I’m silent, and for your companionship when I’m able to share my life and my journey. Y’all are a gift to me like I can’t begin to say. I pray your 2018’s off to a fabulous start.

Love you all. <3

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