Sep 28th

“We shouldn’t make our audience our counselors.”- Walt Wangerin

I heard this quote this week in the context of waiting to tell certain parts of our story, lest we make ourselves the main character, rather than the Great God who is the Author and Perfector of our faith. What a comforting thought to me as to why there are times that I feel like I just can’t write, like I just shouldn’t write.  I feel like I’m ready to write again, like I’m ready to slowly share again.  This “catching up” will have to come in several spurts, and today I’m writing more about my own, internal journey.  There are so many wonderful memories and truly amazing, God-sized miracles in the life of our family over the past summer months and now, heading into Fall.  I cannot *wait* to share them with you, but I really felt compelled to share this part…..even though I really didn’t wanna ha.

So, what happened after Titus’ diagnosis?!  OH my!  So much, too much to write in one post, so I’m just going to begin today.  Stealing the words from a dear friend, who is also a special needs mom, I went into the black hole.  The black hole is a place that I think many of us descend to in various seasons of our life.  It’s a place where you feel everything, but you feel nothing.  There were bright spots, but an overwhelming feeling of I didn’t know how to move forward.  I never lacked faith that the Lord was with me and for me, but it was more like I was in a dark, unfamiliar place and I felt disoriented and a unsure where to go or how to get there.   I did remember my dear friend’s struggle, the one she went through after receiving her son’s diagnosis, often and how truly hard and heartbreaking it was to watch from the outside: to see the wrestling, the grappling, the battle that is grief, and know that the only One for her was the Comforter, Himself.  I remembered this struggle and I knew I was there, I was in the black hole.  I flailed around, a swirl of questions, self-doubt, frustration, loneliness, helplessness, sadness and a general discomfort from the uncertainty and lack of control in my circumstances that I could never get away from.  Friendships went through growing pains, as I didn’t much resemble that “get it done” girl that I found my identity in just a few short months ago.  I was angry that it seemed like some just couldn’t understand and I wanted to push them away.  I was annoyed with myself that all those frameworks that had worked for my entire life just weren’t working this time.  Every other time in my life, I could try harder, be more organized, make a plan, create structure, maintain control, and I would be ok.  Even in the season of grief accepting Judah’s disabilities, I could keep our 650 square foot apartment pretty darn clean most of the time, I could stay on top of all those appointments, therapies, in addition to other personal obligations….he was my only kid and I could pour all my effort into controlling our world.  It’s funny to look back now, because, at the time, I wasn’t even aware just how much I was depending on myself and my own strength.  WELLLLL, not now.  There were days where I just sat on the couch, with the laundry piling up, a filthy kitchen floor, and toys that needed to be tidied.  I just sat there, listening to Titus rip up magazines and throw the pages all over the living room simply because I didn’t know what else to do- I was paralyzed.  Our church has such an amazing counseling center, and I knew this was my time to have someone walk through this season of grief with me, and point me back to my Compass and True North, my beloved Jesus.  She asked me at my first appointment, “Why now?”  My answer was that I felt like I was carrying around a backpack of burdens and I just needed a safe place to dump everything in that backpack out, spread it out all over the floor, and have someone help me sort through it all and find what needed to be thrown out, and a place for all the rest of it to go.

And, you know what truth I found- like deep down profoundly knew- for the very first time?  One of the most simply complex, most often quoted, and most beloved truths that our Christ and Savior ever spoke:

“Blessed are the poor in spirit, for theirs is the kingdom of heaven.” Matthew 5:3

I’m not really sure what I thought “poor in spirit” was until this season of life.  I think I had a general “intellectual” or “theological” knowledge that it was someone who realized they needed God; that their own good works or efforts at being right would never compare to the Goodness and Righteousness of God, and that they knew it.  All of these things are right and true, but I found that for me, it was an altogether different thing to be deeply aware of the meaning of this phrase: poor in spirit.  That was me, I was undone.  I had used up all of my resources, I had tried all of my methods, I’d pulled up my bootstraps and attempted to create a better “system” or “plan” and nothing worked.  In and of myself?  I had nothing left.  I was dead broke, impoverished, used up, helpless, hopeless, and so broken.  But oh! the beauty that He didn’t just give us the definition of “poor in spirit”!  Read that again: the kingdom of heaven?!  The kingdom of heaven is theirs?!  

Down at the bottom of that black hole, I began to see and feel the great Light of this Truth.  I was joking with a friend the other day that my only reference for what I needed was imagery gained from my professional work as a NICU nurse: I was like a flailing, uncoordinated newborn that needed to be swaddled.  I needed to feel the safety and security that He was all around me: I could push boundaries, stretch and exhibit those human reflexes that cause us all to flail- and to feel His presence all around me, in every direction.  His goodness and grace over me was so palpable some days, it’s my only explanation for being able to stand here today and say that I have and I am coming out of my own “black hole” and I would never change the deep truths that I learned there for anything.  Notice I said that “I am coming out”, that is, I acknowledge that this journey is far from over and I know that grief will visit again.  But this time?  This time I can embrace being poor in spirit as a blessing, because it is the only way to truly know the very Presence of God.

This was a hard post for me to write and I’ve spent a lot of time sitting here thinking about how I wanted to write so, so much, but also how I’d really rather write nothing about this part of the journey.  I’ve been reminded recently, though, that deep grief- whether you are a special needs parent or not- is a part of most of our lives at some point, and it’s the part that we don’t want to talk about in ourselves.  But I’ve also realized that when you are the one in that very season, you so desperately want to know that you are not alone, that you’re not the only person who has struggled and wrestled and cried and experienced such a specifically poignant type of paralysis.  And I look to the Word of Truth, yet again, He’s calling, yet again, and reminding me “You’ve been chosen!” so that “you may proclaim excellencies of him who called you out of darkness into his marvelous light.” ( 1 Peter 2:9)  As always, I’d love to hear from you all!  I love hearing the stories of others and sharing this journey together…I’m so grateful we are on it together.

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