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When I Paid It Forward and Helped Other Moms of Children With Down Syndrome

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October is Down Syndrome Awareness Month. A lot of people in our community post daily facts about DS or cute pics of their kid or things like that. I thought I’d just share our story and some thoughts.

We are still relatively new to the club. My daughter, Lu, will be 2 in November. But this is a world wide group that flings its arms wide open to welcome you in and to help you navigate the world. It’s really incredible. 

Everyone who’s already in wants the new member to “relax” and to encourage the recently diagnosed to let them know that it really and truly is going to be OK. 

I am forever grateful for those beautiful mommies (I still haven’t met some of them in person) who answered my questions, especially the ones I was too embarrassed to ask, but they knew I would want answers to. They gave me honest answers and told me to take my time and cry when I needed to.

The mommies also told me I would know everything was all going to be OK the minute I looked into her face for the first time. They were right. 100 percent. 

I remember praying with all of my heart before they put her in my arms that if she really did have DS that I really wouldn’t care. And my prayers were answered. And the mommies were right. Every single fear and every worry disappeared immediately, and all I saw was our Lucia Faith. (“Faith” because ours strengthened because of her!) She was flawless. Perfectly healthy. Strong. Gorgeous. A snuggle bug immediately, which was hard because she had to spend a week in the NICU getting some fluid out of her lungs. Vianna adored her immediately and is so incredibly proud of her and is the best big sister ever. 

Once we got home and into our new groove, I just wanted to pay it forward and help other mommies the way I had been helped. To answer the questions — even the ones they would be too embarrassed to ask — and let them know that it’s going to be OK. I am so thankful I got a couple of chances to do that right away before I really even knew what was going on myself! And I pray I will continue to be able to do so. 

When we were going through all of the appointments before she was born, I remember clearly saying to a doctors, therapists and people at the clinic that all I wanted to be was her mom. I didn’t want to be an advocate. Our family isn’t really the “beat the drums and march in parades” type.

But I can’t help but be an advocate now. Lu is incredible. She’s incredible because she’s just a “plain old toddler.” It wasn’t long ago that people with DS were assumed to not be able to do anything. People who fought against that stereotype and worked hard to change perceptions, so I can say in complete confidence that Lucia is able to do whatever she wants to do. The families, the people with DS themselves, the doctors, therapists and teachers who have fought for inclusion and who have made it totally possible for Lu and her peers to “just be” burst my heart. Because of them, Down syndrome for our family is truly “no big deal.” Thankfully, we have no health issues. That would have made our story different for sure. But for us, we just do what we do.

Right now, at almost 2, I can see where she is doing things a little later than her friends. She’s almost walking independently but not quite. She speaks but is nowhere near where Vianna was at her age. But as I say, it isn’t a big deal. We’ll work on it. She will get there. Next year, when she heads off to preschool, she will absolutely be walking and talking. Heck, she’ll probably be doing it next month, and we will hardly remember that it took her a bit longer. That’s the common chorus in our community. It may take a little longer, but they will get there. 

I believe DS has strengthened our faith in God and his will and his plan. Let go and trust that he is in control. I believe he has a purpose for each and every one of his children. Amazing. 

It’s also made me more aware as a person. I never paid that much attention to other people and their “things.” I would like to think I have always been a pretty nice person, but I just didn’t see. I try to really see people now. I try to accept people because that’s how I want people to treat Lu. I try not to assume things about people because I don’t want people to assume things about Lu. I try to include everyone because I want Lu to be included.

We advocate for her quietly, I think. We just put her out there. She just does stuff. She will go to the schools and activities that Vianna goes to or went to. We don’t talk about DS a ton because she is just Lu. She’s a toddler. We talk more about her toddler-ness than her DS because that’s what gives us challenges these days! 

In almost two years, I have only had one person say the dreaded “I’m sorry.” Let me just say right now — although most of you reading this will already know — there is nothing to be sorry about. Please don’t ever tell a person you’re sorry they have a child! Say congratulations!

We have not yet had to fight for Lucia to be included anywhere. Praise the Lord! I would like to believe that it will always be like this. She will always be accepted, she will always be included, she will always be loved and adored and mobbed by people wanting to hug and kiss and hold and be with her. But that’s probably not the case. (I wish those same things for Vianna, too, by the way.)

But that’s not real life. I know feelings will be hurt and tough conversations will take place. But whatever comes and whenever it comes, we will deal with it with newfound strength, faith, love and hope. And I will do my best to keep paying it forward and use our experiences and our voice to help others on their journey.

I hope that everyone gets to know at least one person with DS to see that they are just like everyone else. A common hashtag in the community is #morealikethandifferent. Yep. Truth.

I am so happy to be a part of this community, and I am eternally thankful for our sweet Lu. 

A version of this post originally appeared on Amy Spampinato’s blog.

Originally published: October 4, 2016
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