Your daughter is going to be born with dwarfism. When Leslie Spencer’s doctor uttered those words, she tried to talk him out of it. After all, her first child, Clay (5) measured small throughout her pregnancy and weighed just 5lbs, 14oz at full-term. She thought her family just had small babies.
But this was different. He was certain.
And with that, Dream Big Little Ones was born – the blog where Leslie openly and honestly documented her journey to parenting a child with dwarfism. Her very real, raw posts started getting a lot of attention, and the responsibility became real (haters included). She stopped posting on the blog and now uses Instagram to share her journey with the world (get ready for a rabbit hole of pure joy).
She told us:
“I still have people contacting me who get the same diagnosis, and it’s amazing to be able to help them. I want to cater to those moms that need extra support, letting them know what it’s really like – the issues, the joy, and the sorrow.”
She has important lessons for all parents — like how to handle kids’ curiosity when they recognize another child’s differences. (Note: Do NOT pull your child away and retreat.)
Read on to be inspired, amazed, and educated by Leslie Spencer.
In Her Gut
I’m very intuitive and had a feeling something was going to be different before we got Lilah’s diagnosis. I read Kelle Hampton’s memoir Bloom about her daughter with Down Syndrome. The way she was able to convey her heartbreak and triumph was inspiring. I really leaned on the wisdom I had learned from Kelle during our trying time. Kelle and her book are dear to my heart.
The doctor walked in, grabbed a box of tissues, plopped them in front of my face and said, ‘Your daughter is going to be born with dwarfism.’ I thought he’d made a mistake and started trying to talk him out of it. He told me he was 99% sure, and that’s when I started to think there was no way around this. Dwarfism wasn’t a word I had ever thought of before, and I certainly never anticipated it being our word – I only knew the stigmas attached with that word, so the fear of not knowing made me very afraid.
The Hardest Part
I called my husband and told him, and then I became the bearer of bad news to all of our family and friends. It was difficult to relive that pain each time I shared the news. It was a dark and scary time with so many unanswered questions, worrying whether she was going to survive, and, if so, what would her quality of life be?
Googling a diagnosis is never a good idea. We felt overwhelmed, and that only made it worse. My family reached out to the local chapter of Little People of America, and we were connected to an amazing lady born with dwarfism. She told us everything was going to be okay. I finally felt like I could exhale. Soon after, we met a woman in our community that was average-height and had a daughter that was 8 months old and born with dwarfism. I met her and loved her – I couldn’t believe I was afraid of this. I needed to see the parents happy and doing well – to know that was possible.
We had 7 weeks between the diagnosis and Lilah’s birth. We did some serious soul searching and sorted through our issues: What are people going to think? What is it about dwarfism that scares us? All the yucky stuff you don’t want to think or talk about. After those weeks, we were ready to be the best parents possible to her.
When the diagnosis is discovered, you can either grow closer or farther apart as a couple. Your journey is not the same as your partner’s. There is grieving has to occur: You have to let each other feel what you need to feel, communicate those fears, and not judge each other. Most importantly, communicate with each other and be there for one another.
We emailed friends and family and explained our news about our daughter. We asked them to pray – but not to pray that she doesn’t have dwarfism – to pray for a healthy birth. We explained we were chosen to be Lilah’s parents for a reason. We got the most amazing outpouring of love and support, and it helped prepare us for her birth. Our village was formed.
We didn’t know if she would end up in the NICU, or if she would even survive, as there are some lethal forms of dwarfism. I knew we would know within 10 minutes of her birth how she was doing. Once she was born, they took her away, and there were 10 people working on her. The neonatologist finally told us she looked great and didn’t need to go to the NICU. It was such an amazing day!
Lilah has some health issues, so always knowing what’s going to be best for her can be tough to navigate. I also worry about her not being accepted socially: Will she be treated equally? Will she be given a chance by others? Will she have a great group of friends? How will she feel about being born with dwarfism? So far, everything I’ve seen has been really positive – kids gravitate towards her because they think she’s cute.
Staying In The Present
I used to live in fear of future scenarios – kindergarten, mean girls, prom – it was crippling me. A mom in a similar situation whose daughter was a young adult told me, ‘Take one day at a time, and don’t look into the future.’ I was jumping to all these hypothetical situations without any experience. Experiences prepares you for those moments. I had to stop fearing the future because we’ll get there when we get there.
Dealing With People
I always just think everyone’s reaction speaks more about them than it ever does about us. People usually look at Lilah with a curious glance and ask how old she is. They either think she is crazy-smart for a 1-year-old or crazy-short for a 3.5-year-old. We get ‘She’s so cute!’ at least 20 times a day. I just smile, say thanks, and keep going. We make sure we are kind to everyone. After all, it may be that person’s only encounter with an individual born with dwarfism.
People are so curious by nature, and there is nothing wrong with that. They just want to know why she’s different. I’m happy to answer questions. If I could conjure up my ideal scenario (although this rarely happens), it would be this: Strike up a conversation just like you would a friendship. Don’t inquire about her diagnosis right away – ask where we’re from, what my daughter’s name is. And then when conversation allows, inquire about what makes Lilah unique.
Sometimes children look at Lilah confused and ask, ‘Mommy, why is she so little?’, and every time, the mother pulls the child away. Instead, I wish they would come over and say, ‘What’s your name? His name is John.’ Then find something, anything they have in common: ‘John likes to play just like you!’ When you just pull your child away, Lilah feels ostracized. It doesn’t need to be taboo – turn it into a learning experience. Kids usually move right on and go play.
We’ve had some involvement in the Little People of America Association and have made many, many connections in various ways. We have a strong group of average-height parents who have a child born with dwarfism on Facebook and Instagram. It’s been a great way to connect and a resource of knowledge.
When Lilah was a newborn, I had both kids at the library for storytime, and Clay was being disruptive and Lilah was crying. The librarian looked at us and said, ‘Oh wow, don’t you have 2 wild ones!’ I grabbed the kids and left. Cut to a few days later, I was out with both kids again – I was changing Lilah’s diaper on the car passenger seat, Clay was stomping in rain puddles, and our cart of groceries was tipped over. A mom came over to help me and said, ‘I think I saw you at the library a few days ago.’ Of course she did. 😭