I knew I wouldn’t be able to stop it.
What I think needs to come out…
Earlier this month, Kate Clark wrote a truly inspired piece HERE. It’s true that if I wrote a commentary about the whole thing you would be here all day reading, but she touched upon one of the most important feelings I’ve had: verbiage.
Language is a beautiful thing. Without it, we would all be grunting, pointing and carving pictures on the walls to illustrate a story. But we are unique creatures. We can use our voices to say what we mean, and different words to replace ones that don’t quite say how we feel. In her piece, Kate mentioned that I don’t like when people refer to dwarfism as a condition. A lot of people say: but that’s what it is. Here’s why it’s not a word I choose to use…
1. a particular mode of being of a person or thing; existing state; situation with respect to circumstances.
2. state of health: He was reported to be in critical condition.
3. fit or requisite state: to be out of condition; to be in no condition to run.
4. social position: in a lowly condition.
5. a restricting, limiting, or modifying circumstance: It can happen only under certain conditions.
All of the definitions of condition are negative. I don’t believe dwarfism is negative in and of itself. Of course there are negative things about having a difference. Heck, there’s negative things about pretty much everything in life. The point is, condition renders negative imagery in the mind, and it’s something I dislike.
There is a poem that always rubs me the wrong way, too… I know so many people will disagree with me, and that’s OK, but the poem Welcome to Holland leaves a bitter taste in my mouth. The idea that my child isn’t Italy solely based on dwarfism actually breaks my heart. The idea that other people think that my child isn’t amazing because of her “disability” is gut wrenching.
It is all about verbiage.
So many times we let other people dictate how we feel- their facial expressions, demeanor towards our unique circumstances or initial comments can leave us feeling empty and devoid of our own true thoughts.
When we learned Addie had achondroplasia, Dave breathed the most audible sigh of relief. I stared at him through my peripheral vision through welling tears. You’re relieved I thought. The geneticist was visibly upset for us, and our pediatrician came from her home to the hospital with tears in her eyes to offer us comfort. I cried for nights, wondering what this meant for our family. I watched Rosie and Chelsea bash LP and read about all the horrors of dwarf tossing. Friends sent texts offering their condolences.
Then we left the hospital. Whatever had put Addie in there to begin with was leaving her little body and in its place my happy girl was returned.
I stopped reading so much. I didn’t read the texts or answer my phone. I just played with my Adelaide. The same sweet girl I had birthed just 9 weeks before. She was still there. She was Italy. No, she was better than Italy.
At the LPA National Conference I spoke with many parents, but more importantly, I spoke with adults who have a form of dwarfism- whether they have children or not- and they were pleased to hear that a parent was so accepting of their child’s difference at such a young age. When I wake up in the morning, when we choose which park to picnic at, or when we head to music class, Addie redefines herself each day. Her many expressions, striking blue eyes, wild-curly hair, dwarfism, belly, 7 teeth nor dimpled elbows are what define her individually- they are all just details to the fierce warrior within her. With this same thought, I will not let her dwarfism, defined as a disability or condition, be what represents her. This one facet of her being is not what makes or breaks Adelaide as the child we were always planning.
While I respect the idea of Welcome to Holland and all the parents this poem has given healing words to, changing the way we think, the words we use, the thoughts we let pass through our lips and thus give an impression to “outsiders”… all of these things are what make disabilities and, in our case, achondroplasia, more taboo for others. For the medical community who are still grossly inexperienced with dwarfism as a whole, and lacking in bedside manner, to the friends and family who have yet to accept or understand that a difference is not negative unless we make it so; let’s gather ourselves and rephrase our thoughts so we best serve our children. Our community.
I could write a paragraph about why I think the entire poem is ridiculous and why we need to disregard it… but there are parents who have deeper concerns than I. More debilitating differences. Perhaps they will not have other children, so here I am. I speak just for me, in the hopes that we, as parents, friends, family and community, can try to see that our children can be Italy if we let them. I will write a few things about these lines, which will perhaps open up new ideas, new conversation and, best of all, new opportunities.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.
If anything, the life of a parent to a child with special needs is not slower, it’s faster. We juggle more doctors, more appointments, more therapies, more communities, more questions. At times it can be stressful, but it’s also amazing- all the things one can learn if they just take the time. All the people you will meet, all the doors that will be opened, and all the opportunities offered to families who are malleable to making a few lifestyle changes.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
What I had planned was to have a baby. I didn’t even plan on a boy or girl. I didn’t plan on a ballerina, a mathematician, a novelist, a soccer player. I planned on a baby. I have a baby. Everyday is different and some days parents are bragging about how their child walked early- those same parents are later lamenting all the broken knickknacks on the shelves that their early walker has knocked down, how they have to baby-gate their whole home, how Junior fell and split his eyebrow. Guess what? We ALL have reason to brag- whether our kids are saying 100 words at 15 months or they learn to speak later and give us some peace and quiet for the first 2 years. All children are special and worth bragging about. I dare you to find that one thing that makes your heart soar- it doesn’t have to be extraordinary to be awesome! Comment why a child in your life is amazing!
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
Perhaps it is my personal situation that leads me to think this way, but the “loss” of having an average stature child is not so significant. The loss of my father at age 13… that is a pain that will never ever, ever, ever go away. It is a hole- a void- that has left me breathless for nights on end. The idea that my Dad will never hold the perfect being that is my daughter is a significant loss, indeed.
Those nights that are terrible- the ones that leave your child strapped to leads and machines keeping them breathing in their sleep, or you covered in vomit from trach issues, or scratched from a child with a lack of verbal ability- let it out. Cry it out. Scream into your pillow. Run. Hit the bag. But remember your words- your advocacy- that’s what we need to brighten. I too feel jealousy towards parents who have it easy in my eyes, but you know those parents who have “normal” children? They still complain. Maybe Italy is just a bunch of under-fed models and hangovers. So, let’s leave Holland and Italy. Let’s embrace difference and advocate for better language. Better expression.
Let’s use this blessed gift we have as humans- language– and say what we want others to say. Be how we want others to be. Pass our bedside manner, our gentle parenting and our fondness for humanity along as we share our stories, pass on advice and learn from one another.