Lili is Going to be a Big Sister! The McLuckie's Pregnancy Announcement

(Written and Photographed by Wendy, Zach’s mom)

The McLuckie family is made up of three of the most important people in our world -- parents Diany and Robbie and their sweet three-year-old baby girl Liliana. Lili is one-half of our Frederick County nonprofit, Friendship by LiliZach.

Diany and I met through our advocacy with the National Down Syndrome Society just after our family moved to Frederick County in 2017.

Diany and I have clicked since Day One and I so appreciate and adore our friendship. Watching her and Robbie as parents and advocates is so inspiring and watching Lili grow these past couple of years has been so amazing.

This summer, Diany shared some exciting news -- that my favorite family of three is about to become a family of four! Diany and Robbie are expecting a baby in February 2020 and Aunt Wendy is beyond thrilled! So far, Baby McLuckie #2 seems to be growing quite happily and healthily and I can’t wait to hold him/her.

While on a vacation in the Outer Banks last month, we did a mini pregnancy announcement photo session on the beach in Hatteras, North Carolina. Don’t you just love Lili and Diany’s matching bathing suits? And how about the photo with Lili kissing Diany’s belly?! It melted my heart!

I loved capturing these moments and this news and I can’t wait to photograph this little baby in the coming months and years!

Sharing the News on Social Media: How Lili's Family Shared Their Down Syndrome Announcement

(Written by Lili’s parents)

*This post is from January 2016)

One month ago today Lili was born and our little family was created. We had no idea how much love and excitement we would have for our baby girl. Becoming parents has been by far the most stressful and simultaneously rewarding endeavor either of us have ever experienced. We have been surprised by many things including how challenging nursing can be and how much a newborn can LOVE bath time. What didn’t take us by surprise is that Lili has been diagnosed with Down syndrome.

About four months into our pregnancy we were notified that our baby was extremely likely to have Down syndrome. It was during the same call that we learned we were having a girl. It certainly wasn’t the easiest phone call to receive but one thing was certain, we absolutely could not wait to meet this little girl.

We couldn’t be happier to have Lili in our lives. We understand raising a child with special needs will bring unique challenges, but hope the challenges only help us grow as a family as we work through them. We already have such an amazing team of family and friends that love Lili like we do and are eager to help her grow and learn. We post this note as we want folks to know we are not sad, ashamed, or scared for her future. This diagnosis will not define her. We are confident Lili will grow, go to school, make friends, become a Nat’s fan, and do the vast majority of things typical kids do. We are excited parents!
No doubt, if you are reading this post, you will be seeing plenty of posts/pictures of Lili’s milestones in the years to come. We hope she makes you smile like she makes us smile.

Best wishes,
The Luckie Family

"Your Idea Has an Extra Chromosome" -- Using the R-Word and its Effects on Our Families

(Written by Lili’s parents)

I believe at a certain point in our lifetime, we have all used the R-word. We are all guilty here… And yes, being part of the lucky few certainly changes things. We took this word out of our vocabulary when we confirmed Liliana’s diagnosis. We encourage other people to stop using the R-word, but to be honest I try not to overreact when I hear this word. We educate and advocate. When I was browsing my Instagram last week, I saw this story about how this “comedian” suggested changing the R-word to “your idea has an extra 21st chromosome”, making a direct reference to our rockin’ kids; to Liliana. And it hurt me, because, even though this person doesn’t know Liliana, he is making fun of her, and encouraging others to do the same. 
I am so blessed and happy to know that The National Down Syndrome Society has our backs, not only in important matters like passing bills in Congress, but also making sure our voice is heard in matters like television shows. 
Sure, this Netflix special is not the worst thing that is happening in the world right now; this TV show is not the worst thing that has or will happen to our community. Maybe some will see this fight pointless since most likely his “comedy special” will continue on Netflix. But this fight matters to me, because of Liliana and because it’s already bad enough to hear the R-word, I don’t want to start hearing in our slang “your idea has an extra 21st chromosome” — unless your idea is awesome, your idea is strong, your idea is to thrive to succeed, your idea is beautiful, happy, opinionated, crazy adorable, like Liliana McLuckie is.

Did you miss the statement from NDSS’ staff, Kayla? 

Watch it here!

A Relationship Between a Child with Down syndrome and His Sister

(Written by Zach’s mom, Wendy)

I am the luckiest mom in the world. Even on the hardest days, I believe that sentence with 100 percent of my being. Being the mother to Zachary and Addison is such an incredible experience that I treasure every day.

I always wanted a house full of children; I always wanted a Christmas dinner with so many chairs around the table that it took 10 minutes to pass the potatoes from one end to the other. I wanted my kiddos to have a support system around them always and to go through life with some best friends who share blood.

And then reality set in and quite honestly, between health concerns and back-to-back difficult labors and deliveries and moving for Scott’s job multiple times when the children were babies, having more than our two awesome kiddos just wasn’t in the cards for us.

I wasted a lot of unnecessary time wondering if having Zachary for her brother would ever feel like a burden or “too much” for Addie. Looking back now, it’s one of the things that Current Me would most want to slap Past Me in the face for -- I see now that they are each ridiculously lucky to have the other for a sibling.

I don’t know what the future holds for the two of them as a team. There’s a possibility that one day, we will have to officially ask Addie to care for her brother when he’s an adult. There’s a possibility that she will be teased herself about her brother. There’s a chance that there will be moments of annoyance or frustration. There are other possibilities that I can’t even allow myself to say or think out loud, but they lie in a deep dark place.

But what I do know is that now -- right now -- they are each other’s rock.

Addie is an empathetic, wise, big-feelings kind of girl. She wants everyone to be happy and to feel loved and the biggest recipient of her big heart is her big brother. If he’s upset, she’s right next to him rubbing his back. If he has a boo-boo, she’s on an immediate quest for a band-aid. If he’s nervous or trying something new, she is clapping and cheering him on.

This past year has seen a lot of moments with big talks -- about Down syndrome, therapists and special treatments, treating all people the same, bullying and teasing and so much more. It’s a delicate balance of being honest and yet delivering it in an appropriate way for a 7-year-old. She asks amazing questions. I always answer with a pause and complete truths.

But it’s not just Zachary that wins a cheerleader in this situation. 

I talk to adults who have siblings with special needs and the one thing they always say is that having their brother or sister in their lives has made them a better person. Their parents say both siblings learn compassion earlier and bigger than most kids.

If Zach is not wanting to do homework for me or with me, 9 out of 10 times he’ll do it immediately if Addie helps him. If Addie is sad, Zach is trying to be silly and make her laugh. They share with each other -- the last of favorite snack, a dollar from their piggybank, a sweatshirt on a cold day, toys and games to borrow. They read together, help each other with showers, hold hands almost all the time and constantly try to surprise the other with a kind note or gesture or surprise. If one has a day with mom or dad alone and the other is at home, the one who is out and about will always ask to bring something back for the other. They request sleepovers constantly and frequently read a book together before bed.

Photo thanks to Amanda Hedgepeth Photography

There is a lot of cheering in our house. A huge amount of hugs. And all the laughter you can imagine. And our house is always filled with kids -- friends of both kids. Our home and our hearts are more full than I ever could have dreamed.

I really am the luckiest mom in the world. But my kids? They’re even luckier. Because they have each other.

Talking to Kids about Down syndrome

(Written by Zach’s mom, Wendy. You can follow Zach’s journey HERE.)

We talk about Down syndrome quite often in our house. It pops up in interesting and the most random ways and we embrace it and go with the flow. It’s all about reading the audience, reading the room and being honest, in my opinion. This is especially true with kids.

We don’t hide Down syndrome or what it means or could mean for our kids and it seems our friends and loved ones have the same approach with their children. Most, if not all, of the kids that are close with Zach at least know that he has something called Down syndrome that may change the way he does things but not whether or not he can do all the same things as them. We explain that having Down syndrome -- and anything “special” like different-colored hair, being really great at different things, not being able to see, being autistic, etc, etc, etc.

Here’s how we talk to Zach, his sister, Addie, and their friends.

1. Let them lead.

We don’t usually throw out serious discussions without a question prompting it. Sometimes, Addie will ask about the National Down Syndrome Society events that I photograph. In the past, it came up because of Zach’s therapies or him going to a different school in previous years.

2. Let them end it.

Similarly, I believe that we should take our clues on when the conversation needs to be completed. No need to drag it out too long or take it too far.

3. Relate it to things that they know and understand.

I have found myself making pretty silly comparisons and I’m alright with that because I think our children “getting it” on their terms is what matters most. I’ve compared kids who have special needs or differences to My Little Ponies having different magic powers, colors and cutie marks.

4. If you see questions or cruelty, address them.

This is a case-by-case basis, but usually, if I see or hear questions about Zach or Down syndrome, I answer them on the spot (or give him a way to answer them), especially if I’m the only adult around. If I hear of any mean acts towards Zach, that becomes a conversation with the other person’s parents. It begins with the benefit of the doubt, plus kindness, plus ideas on how to create a better environment for everyone involved.

5. Encourage them to spread kindness.

Even more than we talk about Down syndrome or special needs, we talk about how important it is to be kind and to be a good friend. We’ve given Addie ideas on how to help friends who have not been treated well and what to do if she sees someone being mean to someone else. We’ve also talked about what she can say about Down syndrome or special needs. She’s an incredible ambassador for her brother.

Because we’ve been open and honest with our children and our friends have done the same with their children, I like to think that we’re making the world a little better for all of our kids. We’re teaching them open-mindedness, patience, advocacy and the beauty in differences.

Talking Truths about Down syndrome: Addressing Frequently AVOIDED Questions about Down syndrome

(Written by Wendy, Zach’s Momma). You can see more of her writing and Zach’s journey HERE.

I believe so strongly in the power of talking about and educating others on Down syndrome. You can’t fully understand something if you don’t get your questions answered about that subject. And while I love taking in questions about Zach and Down syndrome in general, I also know that there are a lot of things out there that may either be too uncomfortable to ask or you might be worried about hurting feelings or coming across as unknowledgeable asking it. So, I’m here to collect some of those things and share the truth -- the whole truth -- about some frequently-avoided questions about Down syndrome.

1. What causes Down syndrome?

Here’s the tricky thing: There is no known cause for Down syndrome. In all of the research so far, no connection to the parents, environmental factors or anything else has been linked to causing Down syndrome.

2. What are the chances you have a child with Down syndrome?

Down syndrome is the most commonly-occuring genetic condition. Approximately 1 in 700 children are born with Down syndrome each year in the United States. The only slight correlation to Down syndrome occurring is maternal age and even that may be simply because women are having babies at older ages than previously.

3. Will people with Down syndrome have a lower life expectancy than others?

The expected life expectancy for someone with Down syndrome has increased greatly over the years, thanks to research and achievements in science, medicine and technology. In 1910, people with Down syndrome only lived to be 20 or so years old. 100 years later, and the current life expectancy has now reached around 60 years old.

4. All people with Down syndrome have the same level of challenges and difficulties, right?

Nope, not quite. There is a wide range of intellectual and cognitive delays and disabilities for people with Down syndrome.

5. Are people with Down syndrome always so happy and so cute?

Ha, ha! I’d love for you to come hang out with sweet Zach when he’s in a time-out or being especially ornery. Zach -- and all people with Down syndrome -- have the highs and lows of personalities and attitudes just like anyone else. There are temper tantrums in toddlers with DS; there are moments of talking back in youth; there are setbacks and disappointments and as much laughter as there is frustration.

There is a lot more to share and I hope a lot more questions to answer. Knowledge is such tremendous power.