I met Brielle a few hours after she was born. My husband and I had her brother and sister over for the day while she was working her way into this world. Her mother Paula, a very good friend of mine, looked happy and calm (as she does most of the time) feeding her new daughter. I held Brielle and kissed her little cheek that day.
Nobody knew then how she was about to change the lives around her.
A few weeks later, Brielle was diagnosed with Achondroplasia, the most common form of dwarfism occurring in about one in 40,000 babies born. Achondroplasia is a form of short-limbed disproportionate dwarfism. Dwarfism is defined as height less than 4' 10".
Dwarfism is a medical condition caused by abnormal (slow or delayed) growth. Often parents of children with achondroplasia do not carry the mutated gene themselves. The mutation in the child occurs spontaneously at the time of conception. It is a seemingly random occurrence that can happen in any pregnancy. Some 80 per cent of Little People are born to average sized parents.
An estimated 30,000 people have dwarfism in the United States and 651,700 in the world. So yes, it is rare. Often, the more rare, the more beautiful. And there is something quite beautiful about Brielle.
Over this past summer I went out West and saw another good friend of mine who had given birth to a boy just a few weeks before Paula. Holding her baby was very different. He could hold his head up without difficulty. His torso was strong and straight. I was so used to holding Brielle, I couldn't believe they were the same age. He even looked different to me. Brielle had become my new normal. I had no idea anymore what an average baby's developments should be at three months, six months etc., because Brielle was creating the new mould.
When she started holding her head up on her own, we all congratulated her. When she rolled, we practically threw a party. Because although milestones will be reached a little later than other babies, she has to work so damn hard to achieve them and in turn, we are going to celebrate, celebrate, celebrate.
For now it is physiotherapy with mom and therapist, trips to Sick Kids for tests and a whole lot of chilling and smiling. She is a happy baby and in my opinion, a perfect baby. For now she is Baby Brielle, the little baby that my boys are obsessed with and always trying to make her laugh and kissing her cheeks. It won't always be this way.
We have talked about what life will be like for Brielle when she is a teenager and how tough it is for young girls to begin with. We live in a society where teenage girls post videos asking the internet if they are pretty or not. The world is a nasty place. It's scary for any mother to let her child go out there and be vulnerable to all the cruelty that exists beyond our comfort zones.
And then I think of Brielle sitting there on her mother's lap looking up at us as we gab away, and there is this calm knowing that she seems to possess. It's like she knows something more about life than I do -- than anyone else in the room for that matter. It is as if through her many smiles and playful stares, she is telling me that she has the perfect soul for the perfect body. She knows it.
She will teach the people around her about disabilities and how she can do everything else her peers can do, but that she just has to work harder. Her physical differences will make sure of it every step of the way. She will also reveal how ignorance can shape a person and how they are not worth any time unless they have an opening somewhere in their heart.
But the most important lesson we will get from Brielle is to remember what really matters. Yes, she will stand in the face of adversity every day, but that calm knowing that she has will always be there. Whether it be through her smile, or her words, she will remind us all that life is not about how you look, it's about what you see.
By Trish Bentley
This was originally published on The Purple Fig
The Purple Fig is an online women's blogazine with an emphasis on realistic and inspiring personal stories from women of all age groups, lifestyles, and nationalities. We feature essays about parenting, the journey to womanhood, feminism, overcoming challenges in both career and personal life, and issues surrounding sexuality, relationships, and family life. This is where women go to be inspired by the knowledge they are never alone.
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