by Leslie Spencer
It was me and Clay and my bump of a baby. I was 33 weeks pregnant. I had just finished my ultrasound and was waiting for the doctor to come back into the room. Clay was watching the old school Mickey Mouse episodes on my phone. You know, the ones that have some adult humor and aren't sooo PC. The ones where I find myself giggling too. Where Donald is extremely grumpy and Mickey Mouse talks in an even higher pitch. And then the doctor walked in. And I knew I was getting bad news by the way he walked past me and headed straight for his seat. He looked me in the eye and said, "Your daughter has dwarfism." And he set the Kleenex box on the counter right under my nose.
This is where my journey began. With this news and any other news about your child, your parent, your friend... or even about you... the journey begins here.
This is where we all veer off in different directions. How we handle the news and every day forward after that is what makes the story our own.
And with that said... here is my letter. It is written for an average height mama and daddy who just found out their baby has dwarfism. It is a letter I wish I had eight months ago. It is a letter that we can all learn from.
I know. The word "dwarfism" is sitting in your throat like a lump that cannot be swallowed. I know. The sentence that informed you life would be different has been repeated over and over again in your mind like a broken record. I know. Your visions of the future are now blurry, vague and even scary. I know. You feel like you just got pushed into a new world that is very different from your own. I know. You fear judgement. You fear ridicule. You fear different. I promise, I know.
This is what I will tell you... take a deep breath. Like a really, really deep breath where you get all that extra air out of your lungs with a 10 second exhale. Let yourself feel what you need to feel. Grieve the baby that you imagined if you need to. Cry and sob and cry some more. And then repeat after me, "Everything is going to be ok." Say this often. Say it out loud. Say it into the mirror. Say it to your spouse. Say it enough until you start to believe it. Because... everything really is going to be ok. I promise.
I understand because I was in your shoes. I am an average height mama married to an average height man with an average height two year-old. The word "dwarfism" wasn't even on my radar. Until, I received the news at 33 weeks pregnant, that my baby girl would be born with achondroplasia. And I was sad. I was worried. I was scared. I understand because I was in your shoes.
And those feelings are natural... and expected. And receiving news that your baby will be different is hard.
But, I want to tell you something. Something I figured out pretty quickly... hard doesn't always mean bad. I knew this would be a journey for our family. I knew it would change us and force us to open our minds. I knew it would cause us to take a good look in the mirror and do some real soul searching. No, those things aren't bad... just hard. But isn't anything worth attaining require some sweat and tears? Hmmmm... yes, I believe that to be true.
What I know now that I didn't know then: this journey would be the best thing that has ever happened to us. To me. To our family. I allowed this journey to change me... to be better... to teach and lead by example... to make a difference... and I now consider myself one of the lucky ones. It's kind of like that free "go to the head of the line" pass or the shortcut through the jolly jungle (or whatever it's called) in Candyland. Well in this case, you get the shortcut to happiness if you allow yourself to understand how truly lucky and blessed you are. And I will tell you something my doctor told me on the day he told me the news... "In a year from now, you will wish nothing is different." Trust me, when I first heard him say that I had a jaw-dropping, "What?!?" look on my face. I thought, "Why would I ever think that?" Well, I think it. And I am hoping you do too.
I remember the questions... so many questions. I remember googling. And it was too much information, too difficult to read and sort through it and make sense of it all. It was overwhelming. Just know this... yes there are some increased risks with each type of dwarfism. Choose an awesome doctor and an even better geneticist and come with your questions in hand. And repeat, "Everything is going to be ok." And if you do get overwhelmed... take a step back and just focus on one day at a time. Keep your thoughts positive and the rest will follow.
Now when I think of my daughter, I think of her personality above anything else. Yes, she is tiny. Strangers kindly remind me this everyday and I smile and secretly thank God one more time for making her the way He wanted her. But her tininess is just one of the many words used to describe her. She is spunky. She is determined. She is smiley. She is a mover and a shaker and I already know, she is going to do big things. I have never seen so much ambition to do more, see more, be more in a seven-month old baby. She loves life and I love that about her.
And so, my friend... do not be afraid or scared of your bright future. You will come to see that different is so beautiful. For if you had my perspective of time and a little bit of experience... you too would see that things are just as they should be. And life is oh so sweet. Your baby may be little... but never underestimate little. Now, when I see a tiny little ant carrying 50 times his own weight... I get it. You don't have to be big to live big. Please teach this to your child. To your family. To your community.
Lastly, congratulations on your new baby (or toddler or however old your child may be). Take advantage of this journey and take time at every step to really get the most out of each lesson, each moment, each opportunity to grow in the depths of your character. And when you stumble, repeat, "Everything is going to be ok." But really, just between us... it is going to be way better than ok. It is going to be incredible.