“Summer afternoon—summer afternoon; to me those have always been the two most beautiful words in the English language.”
― Henry James
“The Christian does not think God will love us because we are good, but that God will make us good because He loves us.” ― C.S. Lewis
These stories crop up here and there, and they usually go something like this: I had an ultrasound and the doctors said something terrible was going to happen to my baby, but I trusted in God and when my baby was born everything was okay. The doctors were wrong. I am so blessed. And then at the end in a sort of obligatory way – and even if my baby had been born with a disability, I’d still be blessed.
Lately when I read these stories, I feel like the big elephant in the room. I’m the person whose baby didn’t turn out okay.
The doctors were right. The ultrasound had been accurate. My baby was born with Down syndrome and a hole in her heart, and then I was left to wonder, “Why us?”
But the reality is that life isn’t a punishment/reward system. Do the right thing and you get a prize and do the wrong one and you get smote by the Lord. It’s far more complicated than that.
Over time, I’ve realized that God doesn’t just bless us with healthy babies. He also blesses us with babies who have hardships and disabilities, and the recognition of that shouldn’t just be one line at the end.
Don’t get me wrong. These stories are wonderful and miraculous and have amazing endings, but there aren’t very many stories about the other side of that coin – the story without the happy ending. Is it just easier to tell these “happier” stories? I’m certainly rejoicing that the babies in these stories are healthy and living healthy full lives, but do we usually ignore the harder stories because we don’t have to ask ourselves the difficult questions about pain? Is it because we can rest in the comforting thought, “Good things happen to good people?”
But that’s not the way it works. Read Job to understand that this is just not always the way it works. Sometimes things go horribly wrong.
And then we have to figure it out. We have to accept what we can’t change. We have to go through the stages of grief and we have to come out the other side. We have to trust in the Lord even when our trust is met with pain.
Because many, many times the doctors are right and we have to deal with that truth too.
Sometimes bad things happen to good people, and we get pushed outside our comfortable box of truth into an entirely new one – a box in which things are just not so simple. Sometimes blessings take on a different form all together. Sometimes blessings don’t come with happy endings. Sometimes God lets us get bashed over the head and we have to deal with that too.
The truth is that sometimes our blessings are really going to hurt.
“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” ― C.S. Lewis
“Life is either a daring adventure or nothing at all.” ― Helen Keller
Mia has a single transverse palmar crease on one hand. It’s one of the tell-tale signs of Down syndrome. On the other hand she doesn’t. It’s just a typical palm. Her opposite hands have become symbolic for me – how it could have gone either way. One isolated soft marker. A four percent chance. Odds are in your favor. It’s like when you watch a spinning quarter. Head or tails. Heads or tails. Heads or tails.
I think back to last year. What would my life have been like if that typical palm had been her story? What if I was one of the 96%?
But I wasn’t. There are still days when I’m sad. Sometimes I look at friends’ completely healthy babies or typically developing children and think, “I wish that were me.” It’s human.
Because it could have gone either way.
Like in one of those choose your own adventure novels, you go down one path and find the hidden treasure or you go down another path and get eaten by an alligator. Only I was forced down a path by circumstance. I didn’t choose the adventure.
So did I find the treasure or get eaten by the alligator?
I started 2013 reluctant to reach out to anyone. I didn’t know what all of this meant. I didn’t want to be part of a group. I didn’t want to be an advocate. I just wanted it all to go away.
I could have gone either way.
But over the course of the year, I’ve made new, amazing friends, been overwhelmed by the support of the people in my life, become an advocate for my daughter, tried to educate others, grown in my faith, and had my eyes opened to an entire community ready to welcome us.
And I’ve fallen madly in love with a beautiful girl who is becoming a sassy toddler.
Last year really could have gone either way.
The infant year is over. I don’t know what to expect from 2014. I’ve given up guessing.
I don’t think it’s my adventure anymore anyway. It’s hers. I’m just along for the ride.