Roger's autism hurts. There are moments where it's crippling. There are times when someone who knows and loves him simply tries to touch him and he screams, "NOOOOOOOO," in a blood curdling voice that rips their heart out (almost never Jason or me, nor Juliet, but just about everyone else who is close to us he will do this to as though they are a stranger).
Or when his booster seat is the slightest smidgen off of perfectly perpendicular to the table and he screams like a banshee, fat tears rolling down his desperate cheeks.
Or when I turn on the Spotify app--we listen to it every. single. morning.--and he gets so upset that I didn't start with the same song as every other day (currently Wake Me Up by Avicii) that he screams and kicks and hits me.
Or when he gets mad during his screen time and throws the Kindle Fire and hits me in the head so hard that it gives me a headache for the rest of the day.
Or like when we're at a Fourth of July celebration and the crowd of 20+ people, including a bunch of children around his age, are in one corner of the yard delighting in fireworks, and Roger is in the opposite corner, alone, delighting in the sandbox, blissfully unaware. Delight is all around but Jason's and my hearts broke to see Roger miss something so simple and beautiful as enjoying fireworks with friends and family on the Fourth of July.
Or when a friend who loves him follows him around trying to talk to him and he never even notices. Like, they are literally breathing down his neck and he doesn't just act like they aren't there--to him they just aren't.
|He's still perfection.|
Roger is still Roger. He isn't a different boy than before his diagnosis. Nothing has changed.
And yet everything has changed. The life I had scripted for myself is over. It's never going to be what I thought it was and my paradigm is redone, the hand of God clearly seen wiping away the falseness that was my mind's map for my life.
You might expect this blog to have grandiose, spiritual, wonderful things about the lovely ways I feel so good in the midst of this suffering. I don't. To tell you straight up, my baby boy is broken and so is my heart. This is compounded by the weight of so much suffering from my own life, my own childhood, mixed in. It's like my life is a hot tub, and the both the heat and jets got cranked way up. I'm sitting there, painfully hot, while a bunch of knives and scissors are dumped in (Roger's autism) and simultaneously a bunch of machetes and scythes from my own past, that had been settled at the bottom, are now back in circulation. The high jets mean they keep hitting and scraping and bumping and slicing my tender, scalded skin.
Yet Jesus sits there, nail scarred hands holding mine, and I see him getting the same wounds. He identifies with me in my suffering. And he tenderly tells me that his Holy Spirit will enable me to not jump out of the hot tub (because though it looks safe, the ground is a thin veil masking the lava fires of hell beneath). He rubs ointment in my wounds and says, "Daughter, though it is painful, this is for my glory. I know it doesn't make sense. I know you'd rather my glory been by me dumping in lovely scented bubble bath from Philosophy. But this is uncomfortable grace and because I am here you will endure and one day you will attest with joy that you would never had had this be any other way. I know today is not that day, my darling, and yet today I am faithful to you and I will not leave nor forsake you."
This isn't lovely wonderful comfortable platitudes about how great it is to follow Jesus. This might scare some people away from him...but I think not. Because I have never met a single genuine person who is attracted to the fake people who pretend to have it all together. Rather, what touches the soul and gives Jesus the glory is seeing his faithfulness when we are utterly broken.
Because, beneath the facade, all of us--ALL. OF. US--are utterly, completely, desperately broken. [Start at 31 minutes and watch about three minutes--a word spoken STRAIGHT to my soul. Thank you, Jesus, for Matt Chandler.]
I had many beautiful responses to last Monday's post. Some shared with me that they wept as they read it. Others who are fighting the good fight of a long enduring faith as they see countless others surrender were refreshed to see that they are not alone in this wearying battle. This is significant to me because, friend, I just can't do it. I can't pretend that everything is fine and I'm ok with this. I can't pretend that I haven't asked God why. Why must this be your will for Roger? Why the boy whom I have prayed for and rejoiced over and dreamed beautiful dreams about since long before I knew he was in my womb? I have cried for Juliet when she reaches for her brother and he shoves her to the ground and she just cries, completely unable to understand the rejection. I have ached for my husband, who blames himself, because he feels he has passed a life curse through his genes.
[Jason was diagnosed with autism as a young boy. More on that in entries to come.]
Jesus is certainly sufficient in all of these things. And he is working out beautiful redemption in Jason and has gifted Juliet with a tenacity of spirit that simply will not do anything but adore her big brother. But the pain is real.
|A screenshot of our monitors. Typical scene: Rog obsessed with something|
in his own little world, Juliet obsessed with Roger.
The heat is up. In addition to the aforementioned effects of Roger's autism are finances and insurance and tons of intense therapy appointments waiting around the corner to start in September. It is therapy and meant to gently push Roger, and we anticipate difficulty of life with him as going out much already completely overwhelms him and he hates, hates, hates being instructed by adults that aren't his parents. There are schedules to be completely re-wrought. Two children who wake up around 9 (yes, I know I am spoiled; no, you in your envy need not try to guilt trip me over it) who will have to start waking up closer to 7 and in the past have not done well at all with mornings that early--and then the therapy and travel and et cetera piled on. Even when I adjust to the new normal, accept the new temperature as expected, it will still be very hot. It will be very stressful and it will suck. Scalded skin.
The sharp objects are swirling around. The emotional toll of this diagnosis, and my own past resurfacing, is not one which gets better after a few good days in the Bible. The circulation of the jets means sometimes the handle is bumping against my calf. It's mildly irritating but I can almost find it soothing, a constant to embrace. And then suddenly the water shifts and the serrated blade has ripped me open and seeing my blood in the water reminds me that this is not at all soothing. It's not at all this world as God intended it. The pain will ebb and flow. I will continue to be hacked up and I won't be fine. Scythes.
And yet there is grace. This all serves to remind me of the truth--this life always brings pain and brokenness. Sometimes--often--it's even caused by me. I desperately need Jesus. I can't do this without him. I cannot be a patient, loving, Christlike wife to my husband and mother to my children, all of whom desperately need me, in the midst of this. I just can't. I will not lie to them and I will not lie to myself. Because I am broken. I always was, now I am being given the uncomfortable grace to see it, to see myself as I really am.
When the when the heat has blistered and the scythe has shredded my hands, my family needs those hands to cook and clean and caress. I cannot do this, but the one who had nails driven through his hands and conquered death can. He can live and breathe this Gospel, that like me, every member of my family desperately needs Jesus always. We are no more broken than we were before May 10, 2013 when the word "autism" was first spoken to us regarding Roger. We simply have been given the grace to be more aware of it now. Jesus has given us the opportunity to see our desperation, accept it, and enter into his waiting embrace. The Savior.
Three times I pleaded with the Lord about this, that it should leave me.But he said to me, Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. [II Corinthians 12:8&9]