Friday, June 6, 2014

Special Needs?

The kiddos get back from Iowa today. That means our sanity flies out the window today, at approximately 6:03pm. That means if I want to blog, now's my only chance.

I've been thinking a lot this week on the term "special needs" and what that means to me.

Back in the spring, when we finally, two amnios later, got the results of the Mosaic Trisomy 22, just after our doctor told us the results, he then began to describe some of the physical features Chloe would have when she would be born. He described the bridge of her nose being flatter and wider set eyes. Lower set ears. That her trisomy meant she'd probably be shorter. We laughed...Alan is 6'4", so there's a chance that "short" in our family will really mean something more like 5'5". We knew there was a chance of her being special needs in other areas. But what did all this mean?

I've never really been around any special needs kiddos. My brother and I are perfectly healthy and normal {well...jury is still out on just how normal I am ;)}. Alan and his brother just as healthy and normal...ish. All our cousins are healthy and, there's that word again-"normal". So what would not normal look like? During one of our prenatal visits at Children's, the doctor referred to Chloe as abnormal, then corrected herself and said, "We don't like to use the word abnormal, so we'll say different. These are Chloe's differences in her heart compared to other babies." I was thankful she was respectful to Chloe being "different" but having to stop to re-word it made it even more awkward. We get it, she's not right. Something is very not right with all of this. But how would we embrace this?

Since she's been here with us, six weeks old today!, we've embraced her. We've loved her even when it hurt. We've loved her to the point of no sleep. We've loved her to tears. We've loved her for who she is, because she's our Chloe. That's all we see in our eyes. It's not an issue of "normal" or "not normal". It's just Chloe; this is who she is, this is her.

I had a chat recently with a new sweet friend about defining the term "special needs". There's a stigma that some put on special needs. I've believed that stigma. I've tried already to protect Chloe from being labeled by society before she even has a chance to prove herself otherwise.

So I'm stuck wondering how I feel about this. On the one hand, she is definitely special needs. The paperwork alone for her social securitydisability proves it. The insurance statement we received yesterday that basically says, "Oh, yes, yep she's still in need of hospitalization," proves it.

Seeing so many kiddos, and adults, anyone really that falls under that "different" category and wondering about it makes me ponder what are we measuring "different" to? What would make me considered "normal" and someone like Chloe considered "different"? Didn't God create us all in His own image? Didn't He decide the number of hairs on our head? Wasn't it the same dude who create the stars and flung them across the sky that made the intricate threads of our fabric that creates our being? So who is to say this person is 'different' and that one is 'normal'? God doesn't make mistakes. He didn't make a mistake when Chloe's heart was forming. He didn't make a mistake when He created her club feet or cleft palate.

So I'm choosing to look at the term "special needs" and not think it's because she's different  like society has taught me to believe. I'm choosing to look at it that He made this precious, perfect little pink package and think she's right. She's normal. She's normal in terms of that's what He intended. She has health issues: yes. She is proving to do better than expected. She has hearing issues: yes. But she's still young and it could be the fluid. She has one kidney: yes. But last I checked, God's not slow and He knew that was coming too, and if He knew it was coming, then He'll go before us in it as well.

It's going to be a long road, and I can't lie, there will be some grieving and getting used to the fact that we're no longer that perfect family with two healthy children who could go out on a date on a whim with the help of a babysitter, but instead, embracing this new life He's drawing us into. This new chapter in our marriage and parenting and family. Will I stress over a simple date night now wondering who to hire to babysit the kids or can I find a willing nurse to do it? Yes. Will I worry every time I take her to Target, or HyVee, or church, or the park about germs. Yes. Will I worry about what others think of her? Hope not. Will I be prepared to answer when they inevitably ask, "What's wrong with her? Why is she different?" That's what I'm working on. And I think my answer will be, "She's not different and nothing is wrong. She's designed perfectly as God intended. In fact, He designed her so intricately that she has extra chromosomes to prove it." ;)

It'll be a journey, but learning to accept and embrace it. Can't help but think that the Lord calls a certain group of mama's to this amazing journey, and by it we are blessed. Yep, she sure is special. Yes, she has needs that will need met. She can do this. And so can we. And we're blessed and know we'll continue to be blessed with all of our amazing doctors and nurses and specialists. In the world of special needs, those working with our kiddos have thee biggest, widest, most loving hearts you'll ever find. They love on our kiddos and we love them for it.

It's not so much that our daughter will have special needs as it is the fact that she is beautifully needed. I need her to teach me about life. I need her to teach me about love. I need her to teach me about expectations, and how to exceed them ;). I need her to teach me about kindness and gentleness. I need her to teach me about not judging others. I need her to teach me patience.

God's going to use this little petite princess to teach me {and others} so much.


  1. From a kids point I hardly ever thought of our family as different. It was our normal, and I didn't ever think otherwise. Thanks for sharing!!