We’ve spent this month on The Mango Memoirs celebrating Down Syndrome Awareness Month. However, I don’t want to miss the opportunity to recognize Dwarfism Awareness Month, also in October, by introducing you to Lilah. I met this beautiful girl and her mama, Leslie, a couple years ago over Instagram, but met them in real life for the first time last winter. Honestly, before meeting Lilah, I knew very little about dwarfism. Leslie shares openly about their journey as a way to educate and bring joy to so many about what life is like for a young person born with dwarfism. I highly recommend following her gorgeous Instagram feed at @DreamBigLittleOnes. Leslie also writes at DreamBigLittleOne.com and is on Facebook and Twitter.
When did you learn about Lilah’s diagnosis?
We found out about Lilah’s diagnosis when I was 33 weeks pregnant at an ultrasound. The doctor said at the time he was 99% sure.
What were some of the emotions you had when you got the diagnosis?
I was caught completely off-guard and I felt crushed. I had to call my husband on the phone and relay the news that Lilah would be born with dwarfism— it was the hardest sentence I have ever had to say. We had some dark moments in the first few days and then we began putting things into perspective and coming to terms with her diagnosis. By the time she was born, we didn’t have any misgivings about her dwarfism and we were just thrilled that she was our daughter— exactly they way God made her.
What are some of Lilah’s favorite things?
Lilah is a firecracker – so much fun and such a big personality. She’s full of life and brightens everyone’s day who comes into contact with her. She’s very girly and loves princesses, dancing and animals.
What is something you want everyone to know about Lilah?
I want people to know that she’s more alike than different. I don’t want peoples’ reactions to her to be hurtful (even though I know this will happen). I want people to try her fairly and with kindness.
What have been good resources for you to learn more about dwarfism?
We really like the website Understanding Dwarfism.
What is something you don’t think many people know about dwarfism?
I think people would be surprised to know that 80% of individuals born with dwarfism are born to average-height parents.
What are some of the appropriate terms related to dwarfism? What are terms that are outdated or should not be used?
I prefer “born with dwarfism” — that’s just my personal preference. It is PC to also say little person, person of short stature and dwarf although I do not like these terms. It is offensive to use the word “midget.”
What is one thing you feel people need to know about dwarfism?
I feel like the history of dwarfism (and treatment of those born with dwarfism) really creates this long road we have to go down to be able to expect equal treatment for these individuals born with dwarfism. Hollywood, Disney, circuses and many other outlets have treated created this fantasy-world around dwarfism that is absolutely not true and makes it challenging for those born with dwarfism to live life without these stereotypes following them around. It creates such a need for awareness.
If someone you knew was told their baby would be born with dwarfism, what would you tell them?
This is the letter I wrote to new parents… click here
If you could go back to the days and weeks after first hearing the diagnosis, what would you tell yourself?
Everything was going to be ok… better than ok.
What is the most wonderful thing about being Lilah’s mama?
That God trusted me to be her mama— very honored.
For a beautiful post Leslie published on her blog about her stance on awareness, click here. And while you’re there, read a whole lot of other posts. They will touch your heart and impact your perspective, just as they have done for me.
Last month, I traveled with my dear friend, Anna, and her little boy to spend a weekend at The Influence Conference. We stayed with Leslie’s family through those days, and let me tell you, Leslie is absolutely right when she says Lilah is a little firecracker! She loved on little Raleigh, showed us how to make the best silly faces, and asked to show us her pink bedroom over and over. I’m so looking forward to watching Lilah grow up. She is going to do incredible things!