This post is sponsored by Custom Ink. All thoughts and opinions are, as always, my own.
October is Dwarfism Awareness Month
When I read the words that Ian was gone, I was shocked. When you know the hardships of having a child with disabilities, you never think you will have to endure the worst of it. Loss.
I met Heather six years ago. She held me as I spoke with a specific uncertainty that is reserved for new mothers in the disability community. Wondering if I was going to keep this sleeping baby nestled in my arms safe. She assured me I would.
Heather showed up at all the right times. Every hospital stay. Every late night she saw me still up on Facebook. On random days where I didn’t know what I needed, in swooped Heather with an encouraging message… she just had a feeling I needed it. Heather has been an angel to me. And I… I have not been the same friend to her.
Her loss is unimaginable.
Her sweet son, who we met through the dwarfism community, passed away on August 6, 2018. On that day, the world lost a light and a star was planted in the heavens above. I knew I had to do something. I had to be there for her. But like coward clinging to a last hope for themselves, I could not bear to face this loss. And so I wept. I craved a message. Wondering how I could help this woman who always did for others- who has been a support to me since day one. And that message came though.
My inbox flashed NEW MESSAGE…
Custom Ink wanted to work with me.
I learned that Custom Ink is the leader in custom apparel and accessories for groups, events, and special occasions. With a combination of creative design inspiration, high quality merchandise, caring service and innovative design tools, Custom Ink has everything to make the customization process simple. I love that they help create custom gear for their clubs, companies, charities, family reunions, and more- for all size events… but also that their customer service is there for amazing support and to assist in the hard parts.
As I created my fundraiser, I sobbed through designs and options. I saved the wrong styles and set the font off-center. I called the customer service number and almost screamed into the phone, my frustration and the hot feeling of nausea that comes from doing something you never thought you’d have to do, swelled up in me.
Rae saved the day. She gently explained to me that everything I couldn’t figure out was being handled by her at that very moment and my images would be updated within minutes. Her kind voice brought me back to Earth. She offered words that were comforting and genuine. She was sorry for the loss… she also couldn’t imagine it. She felt like an old friend, and I needed that.
Dwarfism Awareness Month
As I planned the fundraiser, I wanted to make sure it coincided with October, which is Dwarfism Awareness Month. Ian always shared his smiles, his kindness beamed though his lips, the shine of his teeth reminding you to just give it your all. He was an inspiration to me to get out of my own way and just live. He lived his life so wholly, I feel a guilt each morning I wake up and begrudgingly plop my feet on the floor. He reminded to to feel, so wholly, the blessings in my life. To live. And to LIVE WITH KINDNESS.
Little People of America began in 1957 when famous actor, Billy Barty, made a national public appeal for all little people in America to join him for a gathering in Reno, Nevada. Mr. Barty and 20 other little people joined together and Little People of America was formed!
Learn more about the first 50 years of the LPA.
To ensure I know how to answer her best and to learn and navigate a world that is not my own to dictate, I’ve started my own library at home. There is a complete reading list of:
Fiction with Dwarf Characters
Parenting and Children’s Books
Living with Dwarfism Essays
So, from this, and the advice of many LP women my initial reading list is a mix-basket of parenting books, medical information, history, something for Addie, and personal anecdotes.
More about dwarfism and LPA:
♦ There are over 200 distinct forms of dwarfism and skeletal dysplasia.
♦ The typical height range of people with dwarfism is 2’8″ to 4’5″, and is generally not greater than 4’10” at adult height.
♦ Eighty percent of people with dwarfism have average height parents.
♦ There are an estimated 30,000 people in the United States and 651,000 internationally with a type of dwarfism.
♦ In July 2009, the word “midget” was declared inappropriate and offensive. Preferable terms: average height, having dwarfism, short stature, little person, LP, and the medical terminology use of dwarf. The most preferred way? The person’s name!
♦ LPA has registered a complaint with the FCC over the use of the “m” word. The goal is to raise awareness around the offensive impact of the word in order to eliminate use of it in media, popular culture, and in everyday language.
♦ LPA has 6,500 members across the United States and includes 70 chapters active in all 50 states.
♦ Skeletal dysplasias affect bone growth, but generally do not affect cognitive abilities.
Custom Ink has helped people create more than 100 million custom products– and I am one of those. In my need to help my friend, Custom Ink has given me an outlet to do that. To be able to raise money, yes, but of utmost importance: To remember Ian.
It was such a personal experience to bring this project to fruition. Watching my friend lose her child aches in my soul, but knowing his message will be passed on, remembered, and shared for a lifetime means the world to me. Being able to choose different styles to reach as many friends and supporters as possible has made this project a simple way to spread Ian’s message: I believe in kindness. Do you?
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