When we first entered the world of special needs parenting, I thought I had gotten to skip over the hard entry. Because of adoption, we knew Zoe’s diagnosis of cerebral palsy a few days before we saw her face and five months before we held her. Her diagnosis brought no surprises or dashed dreams.
But then Robbie had a seizure, which led to a diagnosis of Benign Childhood Epilepsy. I broke that day. Within a few days of his hospital stay, I found myself Googling “PTSD caregiver post-seizure” and other similar combinations. I didn’t know if it was possible for a mom to experience that after one intense medical trauma for their child (it is), but I knew how I felt. I wasn’t okay, and I wasn’t sure I would ever be.
When the news of Zoe’s complex visual impairments hit a couple weeks ago, our worlds were rocked again, but I knew two truths from the last time. In the coming days, I repeated these to myself, and I’m thinking they might be helpful to someone else too.
1. This will be your normal.
Maybe that doesn’t sound reassuring. Maybe you’re thinking this isn’t the normal you want, so it feels a little like I’m saying, “Suck it up and get used to this, dearie.”
But no, I’m not saying this is a normal you would have chosen. I’m not telling you to embrace it. I’m just letting you know that everything feels foreign now but it won’t in due time. The doctor’s office? It may become a familiar place. Those new medical terms you can’t say, much less spell? You’ll find yourself explaining them to other people someday soon. This new world filled with things like IEPs or durable medical equipment or prescriptions or therapies or whatever else this new diagnosis might bring… it will be your world.
And it won’t feel so terrifying as time goes on (though I can’t promise it won’t still be scary). In fact, it will become so normal to you that some day when you’re talking to another mom on the playground about the once-terrifying-but-now-normal reality, you’ll be caught off guard at the alarm in her eyes, her held breath, or her expression saying, “um, no, darling, that’s not normal at our house.”
And then you’ll remember it wasn’t normal for you either, not at first.
2. You have permission to grieve.
This diagnosis is not part of the once upon a time, happily ever after story you would have written for you child. It’s okay to grieve that loss.
Stop for a moment and let those words sink in until you believe them: It’s okay to grieve that loss. Give yourself permission.
You’ll probably grieve for your child, for the things he won’t be able to do or the hardships she’ll have. You might grieve over brokenness in general, struck by the reality that we live in a world in which kids get sick (and might not get better) and bodies don’t always work like we’d like and disabilities are viewed as less and not just different. You might even grieve for yourself, for the things you won’t be able to do with your child and for the loss of the typical parenting journey you thought you’d have.
That’s okay. Give yourself permission.
And adoptive parents, this paragraph is for you: You will have voices – maybe in your head, maybe spoken aloud by others – who say you aren’t allowed to grieve because you made this choice. You adopted a child knowing she had a disability or he had a medical diagnosis, so you don’t get to be sad about that. Please, I urge you: TELL THOSE VOICES TO SIT DOWN AND SHUT UP. They are not helpful, and they are not right. Robbie was born to us and Zoe was adopted by us, and my grief is valid for both of them. Even though we knew Zoe would have cerebral palsy, I still have sorrowful moments about the things she wants to do, like walk, that she might not ever be able to do.
When you grieve, that doesn’t mean you don’t trust God or his sovereignty or his plan (though if you have moments in which you do, he can handle that). It doesn’t mean your faith is weak. Jesus wept when his friend Lazarus died, even though he knew he would raise him from the dead. We can and should grieve over brokenness. Just as God said to Adam and Eve in the garden, “Who told you that you were naked?” sometimes I want to ask the world – and myself – “Who told you that you couldn’t grieve?”
That’s what I wish someone had told me the first time a diagnosis landed like a left hook: grieve on, and as you do, hope for the day when your new normal feels more normal than it does today.
Well, as normal as it gets around here, that is.