“For you created my inmost being. You knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made. Your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.” – Psalm 139:13-16
I stood in the nursery staring up at the freshly-hung photographs on the wall and cuddling my new baby girl in my arms.
“I just wish I would have known all along,” I whispered as my eyes brimmed with tears, “that she would be my last baby.”
“You don’t know that,” my mom reassured me, “this story isn’t finished yet.”
But as far as I was concerned, it was. I could never have another baby – I could never open myself up to feel that kind of hurt again. Nick and I had always talked about having a big family, so I just assumed that there would be more children in our future, but now any child we had would be at risk for autism. With Faith, we didn’t have a chance to think about it. I was already pregnant before we even had even the first inkling that something might be different about Luke. We were already committed.
But now, knowing the risks. Knowing the studies. Knowing the full reality of the experience of finding out your child has special needs, how could I ever choose to have another child? It was unfathomable to me … then.
There are times I’m concerned that that other parents think that I’m just deluding myself into thinking that my lot in life isn’t that bad, by pointing out all the things to be glad about in what is actually a really crummy situation. Can I be honest with you? Sometimes I feel that way, too.
I’ve dwelt in the dark places. I know what it’s like to go for a hearing test and have the absolutely bizarre feeling that comes from literally hoping they tell you your child is deaf, because deafness seems infinitely easier to overcome.
I’ve questioned my decision to ever become a mother in the first place.
I’ve felt anger that this happened to me, when other mothers do horrible things to their children and their kids are typical.
I thought it was unfair that this happened to my first child. Couldn’t I have had just one child that I could have normal worries about? Can’t I worry about the things that other moms do, like breastmilk versus formula, whether or not to buy organic, or which preschool is the “right” one?
I even felt cheated that this happened to me in my youth. I referred to myself as, “the oldest twenty-seven-year-old on the planet,” as if I were the headliner of a circus freak show. Couldn’t I have been a few years closer to the grave? You know, so I wouldn’t have to walk this road for practically my whole life?
At times, I even prayed the unthinkable prayer that God would take Luke before me, so that he would never know a day that he wasn’t protected, cared for and loved.
Some things I thought are so terrible, I dare not share them at all.
I robbed myself of so much joy as a mother – so much more that I could have savored in the first years of my little boy’s life. If I could obliterate these thoughts from existence, I would. They paint the ugly picture that having Luke somehow detracted from my life. It took time for me to realize that the pain I felt had a lot more to do with me than my son. I wasn’t grieving for Luke, although I thought I was at the time. There is nothing wrong with him as far as he is concerned. He has a good and happy life. I was grieving the loss of my own expectations of what life and motherhood would hold for me.
I was reluctant to let go and surrender to God’s will. Actually, “reluctant” is not the right word. I was like a two-year-old throwing a tantrum that would rival any spectrum child’s. I thought that accepting autism as a part of my life meant that I was giving up on Luke’s progress, but acceptance is not defeat. I fight harder for Luke now that I ever could have then, when I was too wrapped up in dealing with my own grief to be much good to anyone else. Surrender freed me to heal, to love Luke more fully, and to receive God’s blessings.
I’ve had mothers express to me these same fears. “What if I have another child with autism? What kind of life will they have?”
I asked myself that same question a million times before I had the big “Aha!” moment – before I realized that I was asking the wrong question. The question should be, “What if I have another child like Luke? If this was what I was concerned about, what was I implying about the child that God had already blessed me with? Luke has a joyful, valuable life, and he has been a source of tremendous blessing in mine. It may not be the life I would have envisioned for him, but does that mean it is lacking? Shouldn’t I want any child that God chooses to give me?
Has my faith been stretched to its limits? Absolutely, but I’ve said it before, and I’ll say it again: special needs parenting is not for the faint of heart, but it’s fruit holds the very sweetest of life’s nectar.
So, in case you haven’t picked up on what I’ve been building up to ….
With the baby I thought I’d never have.
So here I am. Standing on the precipice of the unknown – and there are so many unknowns. I don’t know if this child is a boy or a girl. I don’t know if he or she will have autism or something entirely different.
But I know this…
I know that God, Himself handcrafted this baby with our family in mind. That He uniquely designed this child for His glory and our good. I know that that this baby’s days have already been written since before the world began. I don’t know what the future holds, but I can “accept all things from Him who is too wise to err and too loving to be unkind” (A.W. Pink).
And that’s all I need to know.