I want very badly to write something clever and creative here, like notes on a cute, crafty project, or something deliciously foodie, but friends, I am completely without creative energy. I am exhausted. My heart is aching. As we eagerly await a final diagnosis on our littlest boy, I sit with so much frustration and emotion. As an almost 10-year veteran of special needs parenting, I feel pretty comfortable describing myself as a woman of steel- I found my strength in my baby’s weaknesses. And while I will never thank God for the challenges my Celia faces, I am absolutely thankful for what those challenges have taught me about myself, about life and about love. The last 10 years have been full of such difficulty and seemingly insurmountable challenges, but through every obstacle we have found hope. Our faith has always been rewarded, if only we could be patient through the suffering. In my greatest sorrows, my greatest moments of fear and pain, my husband reminds me of the cross on Good Friday: it’s Friday, but Sunday’s coming.
But here I am. Not strong. Not optimistic. Hurting. Tired. Overwhelmed. The hardest thing about parenting is admitting when your children aren’t perfect. I always say that the real blessing in all that we’ve been through with Celia was that it released me from using someone else’s measuring stick on my child. That I was able to stop comparing her to every other child her age. I remember before her autism diagnosis, seeing what other parents’ children would do- the pointing, the development of words, the interaction, the age-appropriate play- and feeling completely defeated. I remember thinking “I should be reading to her more” or cursing myself for spending more time working and less time playing with her. That somehow her shortcomings or inabilities were a reflection of my own shortcomings as a mother. And then, miraculously, upon hearing she had autism, I felt something unexpected. Relief. It wasn’t me. It wasn’t my fault. There was nothing else I could have done. It was bigger than me, bigger than her. And while I wasn’t prepared for the lifetime of struggle that autism would create, I felt extraordinary release in knowing that I didn’t have to compete with anyone else’s children anymore.
That’s the thing, right? Aren’t we all competing? We all know life’s not really a competition, and yet it is. After everything I went through with Celia, I’ve found myself hanging on every developmental step of each of my subsequent children. Every word is so precious, every second of eye contact, every hug, every moment of age-appropriate interaction. I LOVE watching my children thrive. Like somehow it’s a reflection of my own abilities as a mother. “Yes! I’m capable! I can produce neuro-typical children!” Even beyond that: “My child did that first! My child did that the BEST!” But then, when baby #4 showed signs of challenges, all those inadequacies came back. There is absolutely nothing worse than watching your children suffer. (Of course, that’s up for debate. I’m sure there very well may be something worse, but by my own experience and estimation, I’d say there’s nothing worse.) In hearing that my child, who carries my DNA, has some challenge that while not life-threatening, will affect their quality of life forever, my first thought is never “why me, God?,” it’s “what am I missing, God? Where did I go wrong? What more should I have done?”
Isn’t that what we all do? In this self-centric culture, don’t we make it about us? I can’t help but feel that way now. I’ll get past it- I’ll see that there are genetic and environmental issues that contribute to malfeasances in all of us, and some of those are more clearly manifested than others. I’ll see that there are treatment options and we’ll start those. I’ll find a network of people who’ve been there. We’ll lean on our faith as a family, and we’ll find support in our church and our friends. And life will go on. But in those moments, where the truth is still setting in, and it’s raw, and it hurts, and all I want to do is scream into the void, there is no comfort.
Friends- I know I’m not alone. In fact, I’m pretty sure this is you too. Feeling inadequate, feeling lost, feeling like there must be something else you could have done, and finding nothing. In being asked by other mothers of newly-diagnosed children with autism how I reconcile my faith with what we’re facing, I always say “I don’t believe God gave us autism- I believe He gave us Celia; I believe He will use her and us for a purpose, and I believe He’s doing that now.” In all that pain, that was my one means of hope: there is still purpose here. There is still work to be done. This is a challenge but it is not the end. It’s not about me. It’s not even about my child. This has happened to us. But it doesn’t make us. We are enough. Say it with me friends: My child is enough. I am enough. WE ARE ENOUGH.
We’re going to be okay. We all are. It hurts today. But Sunday’s coming.
3 thoughts on “Waiting for Sunday”
God loves and provides. I was reminded of this tonight at a youth function. He is there, waiting, chasing after us, after your little man. Because He gave us His son. No one said it would be easy, and it is hard to give praise in trials. Praise Him, for we are wonderfully made in His image. Love you friend
I just love you Ms. Sheila. Your words are always a comfort to me! Xoxo