+ Does dwarfism run in your family?
No, and chances are it doesn't run in yours either. Only 1 in 25,000 babies are diagnosed with Achondroplasia, ours just happened to be one of them. 80% of these cases occur randomly by a mutation of a specific gene during conception to average height parents.
+ What are the appropriate terms to use when talking about a person with dwarfism?
This is the one I struggle to answer, because I have yet to find a term that we are comfortable with. In my life, I have only known a single person with dwarfism and I have only ever referred to her by her name.
The "PC" terms are dwarf, little person, person of short stature and person born with dwarfism. None of these feel right to me, mainly because I don't like referring to Mira as "a" anything. You wouldn't call a person with Downs Syndrome "A Down Syndrome" or a person who has Autism "An Autistic". This is an area where I am turning to other parents for support and will certainly update this once I get more information.
I can tell you this: The M- word is on the National List of Derogatory Words and is considered highly offensive. If you use this term around me, I will correct you every time, so please try to remove it from your vocabulary.
I choose to distinguish Mira by her name, not her diagnosis. You can just call her Mira, or MJ.
+ How tall will Mira be?
I'll let you know when she's done growing! The average female with Achondroplasia is 4'1''. She has her own set of growth charts and as of now, she is at around the 50th percentile for height and 75th percentile for weight. Mira is currently in size 5T clothing. We do a lot of pant/shirt rolling! We are lucky that we have her big sister’s hand-me-downs to experiment with sizing and brands.
+ Will Mira behind on her milestones?
Mira has been behind on some of her physical milestones. She sat up at 1 year old, army crawled at 2 and started walking unassisted at 2 1/2.
+ Is Ellie aware of Mira's diagnosis?
She sure is! Ellie is her biggest advocate. We never shy away from the subject and make sure she knows she can talk about it and ask as many questions as she wants (and trust, me, she has a lot!). We have several kid friendly books that Ellie frequently reads and she loves learning more about what makes Mira different. It's been a wonderful opportunity to instill in her that people come in all colors, shapes and sizes. Bottom line: Ellie sees Mira as her adorable little sister and nothing else. Now, I'm not saying this because she is my child, but I truly believe Ellie was born to be a big sister to a very special girl. She is loving, compassionate, kind and I have NO doubt she will be Mira's biggest advocate and protector.
+ What is your objective with creating this blog?
Having this blog simplifies the way we keep our loved ones up to date on our journey with Mira. It has been very overwhelming for us to repeat the same information over and over, and we have learned that several points get lost in translation. My hope is that the people in our life and those reading this will take the time to really understand Mira's condition so they can feel comfortable talking about it. I also hope to be an advocate for dwarfism, but more importantly for my little girl who cannot (yet) do so for herself.
+ Are you worried Mira will read this one day?
Mira will be encouraged to read this as soon as she can. Her story is important to us, the joy, the pain and everything in between. Her journey will be a large part of what drives her character as a young woman. Having dwarfism will not define her, but it will be a big part of her life that we want her to be in touch with and proud of.
This blog is a love letter to my daughter and a reminder to her, to us and to everyone who knows her, just what a beautiful miracle she really is.