A Chat With Leslie Spencer

This awesome mom to a daughter with dwarfism shares her story and some advice on how you should approach kids with differences.

a-chat-with_leslie-spencer-2Your 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 Diagnosis

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?

Acceptance

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.

Mental Preparation

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.

Better Together

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.

Sharing Info

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.

She’s Here!

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!

Daily Challenges

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.

The DO’s

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.

The DON’Ts

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.

Support System

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.

#Momfail

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. 😭

Babysitters… Coming Right Up!

This new site founded by 3 high schoolers connects job-seeking students with local employers looking for sitters, tutors, dog walkers, etc. 📷 @keelifaith

jobbardThere’s a certain camaraderie that comes with being a parent – everyone’s always happy to give advice and share tips that will make another parent’s life easier. Except when it comes to babysitters: Then it’s every parent for himself, taking on the beast that is Care.com.

Being the friendly parents we are, we’re going to let you in on a new site we recently caught wind of: Jobbard.

Three Westchester high school students were struggling to find part-time jobs to supplement their unpaid internships, and yet they knew there were local parents looking for babysitters, tutors, pet and house sitters, etc. – but word of mouth was the only way to hear about them. So they created Jobbard to connect the two parties.

Students can post their resume and special skills, while employers (i.e. you) can post positions they’re seeking to fill – both for free. While it hasn’t taken the nation by storm quite yet, there are a bunch of posts for the Northeast, and the more people that use it, the more it will grow.

Plus coming soon: employee/employer reviews and payment integration a la Uber.

We see on-demand babysitters on the horizon.

Available online at jobbard.com.

📷 @keelifaith

6 Uber Memorable Birthday Traditions

These simple birthday traditions aren’t so things-focused… and truly say we love you kiddo! year after year. 📷 @mnwerner

bday-tradThe first couple birthday celebrations, it’s really more about you than them. So go nuts with a whole dog and pony show – and we don’t mean that metaphorically, we’re talking about an actual petting zoo in your backyard – or just order pizza and enjoy not doing that.

Because somewhere around the 3rd birthday, your child gets it: Birthdays are all about ME (and presents and cake)!

It’s the perfect time to institute some simple birthday traditions that aren’t so things-focused… and truly say we love you kiddo! year after year. These are the big things they’ll be excited to pass down to their kids. 

3, 2, 1

Once they understand the idea of a birthday, it seems all they ever ask is “wait, when’s my birthday?” Answer with a countdown chain. Thirty days out from the big day, create a paper link chain with one link for every day. Every morning invite your kiddo to tear off a paper link and count how many links/days are left. Bam! Educational, informative, and they get disproportionately gleeful when it’s time to rip the day’s link.

Channel David Letterman

Everybody loves a top 10 list – including 5-year olds. The night before the big day, tear a long scroll from the easel paper, borrow a mix of the most colorful magic markers, and get busy crafting a list just for them (think top FIVE reasons we love Olivia – one reason for every year). We tape the completed list to the front of our child’s bedroom door to discover in the morning.

Call On Your Inner Barbara Walters

In a quiet moment before the birthday celebration, sit down with your little guy and ask a series of hard-hitting questions: What’s your favorite food? Who’s your best friend? What’s your favorite book? Record their answers via video or make a book and stash away in a memory box. Repeat every year and watch your kid grow up and change before your eyes. Cue the tissues.

Ain’t No Party Like a Breakfast Party

Nothing says good morning birthday girl like rainbow pancakes. For more party, string steamers across the back of the chair, put a paper crown next to the OJ, stick a candle in the short stack, and get the day started.

Signs, Signs, Everywhere Signs

While she’s getting her beauty rest, plaster your house in birthday signs. We make ours rhyme with the age: “Love you to the core. You are FOUR.” “Jump and jive. It’s great to be FIVE.” The sillier and more nonsensical, the better. Bonus: If you have a driveway or walkway, use sidewalk chalk and extend the silly birthday wishes outside.

Be The Yes Man

Make the birthday a “Yes” day. In other words, mom and dad cannot say no to requests (within reason, of course). The joy this gives our kids (and believe it or not, us) is hard to describe. Go ahead, throw out the rules, if only for a day.

📷 @mnwerner

12 Podcasts The Whole Family Will Get Into

These 12 podcasts will captivate both kids and grownups (okay, except for Sesame Street).

We remember the exact moment: We were cruising down highway listening to the radio when we heard our 4-year-old sing every word from the back seat…

Last Friday night,
we went streaking in the park,
skinny dipping in the dark,
then had a ménage à trois,
Last Friday night!”

(Thanks Katy Perry.) Horrified and full of parent guilt, we went on the hunt for something more “appropriate” to listen to. Kid music is not an option, so we opted for kid podcasts. Turns out, there’s some awesome ones out there (and they’re educational to boot), but most important they’re a hit with the whole fam!