If I tell you I’m ok, it’s a lie

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

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Sometimes, life just seems unfair and I hate it. I hate that I even feel that way. I’m angry and I’m angry that I’m angry. I feel guilty about it. I should just be thankful. Take the hand I’ve been dealt and accept it and move on. Things could always be worse. And I know I am blessed. For as much suffering as we’ve been through, we have been given much. I’m not so blinded by anger and self pity that I don’t see how gracious God has been with us. It just really sucks to have to walk down THIS path of suffering. Parenting is hard. I both envy and hate the people that make it look easy. I see the “rose-colored” Instagram and Facebook posts. I realize people like to put their best foot forward, (I know I’m probably guilty too) but it’s just salt on the wound. I see people with more Children than me who somehow are able to pursue hobbies, run a business, beautify their homes and whatever else people are doing, and the feelings of inadequacy and honestly, jealousy are just crushing. I hate feeling that way. I hate wishing things were different. I hate when I see your Facebook posts about your conversations with your children because it hurts. I waited THREE YEARS, just to hear Norah call me mommy, how many more years before I can have a conversation with her? How long before I can ask, “Norah,how was school?” And not have her just repeat the question back to me because she does t know what I’m asking? How long before I say “I love you Norah” and she replies with “I love you mommy” instead of just repeating back to me “I love you Norah.” Everything is a fight. Every typical struggle magnified by the altered architecture of her brain. I’m exhausted. Special Pre-K program, therapies, diet modifications, vitamins and supplants, tests/lab work, and IEPs. I feel like I am constantly being thrust into the fire. I feel like I just can’t handle anymore and that makes me feel inadequate as a mother. I feel guilty because I am overwhelmed. I’m not good enough or strong enough or patient enough. I am just so burned out. People have asked me how I’m doing and in the split second it takes to respond with an I’m ok or I’m fine, I wonder, how am I suppose to even answer that? There is so much I could unload and do you really want to hear it all? I’m a mess, can’t you tell? My heart is a mess, bruised and broken and heavy. Some days are bettmer than others, but today is not one of those days. 
I am feeble and crushed; I groan because of the tumult of my heart. O Lord, all my longing is before you; my sighing is not hidden from you. My heart throbs; my strength fails me, and the light of my eyes-it also has gone from me. – Psalm 38:8-10

The end of 2016

I hoped and prayed that 2016 would be kinder and gentler than 2015, which ended with me feeling worn and like I needed to come up for air. Grady was the high point of 2015, my breathe of fresh air despite all the drama that was his birth and first few weeks of life. However, 2016 wasn’t any better. In fact, I think it has been more difficult. It’s been full of stress and anxiety. Norah’s autism diagnosis was in January. Hard to believe that it’s been a year since then. Probably because we’ve been up to our eyeballs in therapies prior to a diagnosis and now….my head hurts thinking about it. 2017 is certainly going to be just as busy if not more so. The wound still feels new though. Just when I feel like I’ve settled, the cycle of grief starts over. Maybe it’s during a particularly rough patch with Norah or despite all the gains Norah has had we see where she is still delayed. Maybe it’s seeing other parents with their typically developing children and how different Norah is that sends me over the edge again. I feel like I’m drowning. I have to keep reminding myself of the beautiful moments from this year otherwise I can’t function. I’m tired of being overwhelmed. I’m tired of being angry, because if I am totally honest, I am angry. Really angry. I am finally not in denial about it anymore. God has been gracious in casting light in that area and revealing it for what it is. I’m angry at life, at autism, at everything and everyone. Im angry at myself for being angry. I’m angry at God. I don’t want to be this way. It ruins everything. It keeps me from enjoying Norah and Grady. I’m constantly worried about Grady’s development. He seems typical now, but what if he regresses? If I let myself enjoy watching him grow, what happens if it goes away? If I hold back, maybe the pain and disappointment will be less if he does regress. I feel like I am in the lowest valley. 2016, there aren’t appropriate adjectives for you, but I am tenderly holding onto hope that 2017 will be better. I am letting go. Maybe 2017 won’t be easier, but I am praying that I might be changed. That my perspective and response would be dictated less by the gamut of my emotions and centered on God and his loving kindness. That God would take my anger away and heal my bruised and tender heart. “Behold, blessed is the one whom God reproves; therefore despise not the discipline of the Almighty. For he wounds, but he binds up; he shatters, but his hands heal.” – Job 5:17-18