I am the mom of a child with autism. I still haven’t come to terms with the fact that this is my life. I think I want to, but I don’t know how because I’m still so angry about it. I feel like most days, there’s this illusion of “normal” because we’ve had a lot of progress with Norah, and so things feel manageable and mundane enough that I actually believe it. Then, one day, it all falls apart. The charade is exposed. Norah has an off day or series of days turning into weeks and I realize my life isn’t normal and how different Norah is compared to typical children is brought into focus. It’s like a one-two punch to the gut. That first hit, the reality check that stuns you, and second takes your breath away. And it’s hard because in those “ordinary” moments, I forget: the pain, the resentment, bitterness and anger; all cleverly hidden behind smoke and mirrors. It’s really shitty, because when smoke clears, I’m still standing in the same spot. I thought I had grown. Changed a little, maybe let go of my anger just a little. No, I’m like Prometheus, tethered to a rock whose liver was eaten daily only to regenerate and then go through the same thing again. Day after day. Only, it’s my anger that tethers me me in the same place and the bitterness and resentment the eagle pecking away at me.
I remember when I miscarried, how hard, nay, devastating it was. I had just come out of this dark season in my life. I had thought I could walk away from God, and I tried, but God, who is just and demands obedience, is also eternally steadfast, loving and merciful, pursued me.
Where shall I go from your Spirit? Or where shall I flee from your presence? If I ascend to heaven, you are there! If I make my bed in Sheol, you are there! If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me, and your right hand shall hold me. If I say, “Surely the darkness shall cover me, and the light about me be night,” even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you. – Psalm 139:7-12
God had brought me out of the wilderness and I had hope. Then I miscarried, and that hope carried me. So much so, that I named the child I lost Hope. I remember going through it though, recalling “advice” that had been given to me anytime I was struggling with something. Advice I’d given others. “Give it to God”. I’ll admit, that while that sounded freeing, I didn’t understand it. How did you give something to God? How do you let it go? How do you know if you in fact, “let go and let God”? I had prayed that a lot, only to say “amen” go about by business still dealing with it and and not handling it any better than before. It was after I miscarried and I was living moment to moment that I realized what that meant, and it was how I survived. There was no one and done, I give my crap to God and from that moment on I’m great. It was more like in one moment “God, I can’t breathe, this pain is too great”, and God’s response, “I will carry and sustain you. I will heal you”. When I had fears of another miscarriage and whether or not I could endure, His response, “I am sufficient”.
Navigating the waters of special needs and raising a child with autism should be no different. This season of suffering should elicit the same response. Why is it so hard then? Why have I not been able, moment to moment, to approach God and depend on Him for my survival? There’s a wall. Is it because I’m angry? I’ve admitted to being angry with God. I’ll also confess, I don’t know what to do with that. How do i get through that? What do I do with it? I’ve prayed, read scripture, talked about it. This season of suffering had been especially hard. Norah is only four and the road ahead is only paved with more struggles. More therapy, more special education, biomedical therapies and the list goes on. It’s so daunting to look up from where I am and know that this is really just the beginning. We’ve only scratched the surface.
I have mentioned before that I struggle with depression. I’m prone to it. My body seems to struggle making enough dopamine and keep it bouncing around my brain long enough to keep me stable. The stress of the last year has been unmanageable. I recognize that a chemical imbalance is just part of my problem. I know there’s a heart and sin issue too. I did get some medication, and that has helped me feel more, level headed. I’m still struggling, but I think I’m better able to start dealing with things. I don’t really know what that entails though. Despite being medicated, I’m still stressed, overwhelmed and melancholic. There’s not a pill that helps with doubt and disbelief. I keep going over things. Reminding myself about who God is. How good He is and that He is sufficient. I may not believe it today, but I will be again be confident.
But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The LORD is my portion,” says my soul, “therefore I will hope in him.” – Lamentations 3:21-24