Support for Baby Luca & his family

Written by Luca's Mom, Shannon Sykes-Nehring

As the mother of four kids, two of which are teenagers, one preteen, and one soon-to-be preteen, the original idea of having another baby felt daunting. And as I neared my 40th year, I wondered if I still had the energy that parenting young children requires.

Ultimately, sensing a purpose I didn’t quite understand, I decided to step out on faith and welcome a new being into my life.

I never could have imagined just how big that purpose would be. As I prepped and planned for new parenthood, I imagined a repeat of the pregnancies and deliveries that came before. After all, this was an area I was experienced in. ;)

But soon everything changed. On June 11th, Luca received a life-shattering diagnosis. Positive for Trisomy 18, otherwise known as Edwards Syndrome. We were told Luca only had a 50/50 chance of making it through the pregnancy, and if he did, he likely wouldn’t live long after. Plus, he’d be severely disabled and face a plethora of other health issues. The doctor who had suspected something was wrong to begin with was certain that we would want to terminate the pregnancy.

But the doctor didn’t know what I knew. That Luca was meant to be. That he had called out to my heart, long before I knew anything was wrong. That I knew him already, deeply. That he chose this journey and chose us to walk it with him. That the Ancestors and the Creator had already known what we didn’t, and were still rejoicing at his arrival. That this moment was too big to walk away from. And that I would cherish my connection to him, no matter how long he was meant to be here with us.

My family’s lives have changed pretty drastically already since that day in June. My husband and I have separated, my kids and I are getting used to life on our own again, and have begun the slow process of shutting down our homestead activities so we can focus on what’s most important; welcoming and caring for Luca, and for each other.

Thanks to supportive friends, loving kids, active Ancestors, and the ultimate support of the Creator, I’m moving through each day with a sense of faith and peace. AND if I’m being brutally honest, I’m still struggling.

So many people have offered support and yet, I’m still learning to ask for help. Actually asking for help, and being able to receive it, is one of the things I struggle with the most. AND I know I won’t make it through this time without it. Perhaps, this is one of those lessons Luca is trying to teach me.

So I’m humbly coming to community for support. Our medical bills are going up quickly and with a potentially lengthy NICU stay ahead, they are only set to increase. With the news of his diagnosis, we opted not to move forward with a baby shower because it just felt too hard. Which means, if Luca does make it home, we have almost no baby supplies here for him. Not to mention the specialized equipment he may need. If he leaves us before then, we’ll be tasked with laying him to rest, a potential outcome I just can’t wrap my mind around yet. I am so overwhelmed by all of this.

Anything you can offer to help is greatly appreciated. Funds will go to cover medical costs, travel costs as we relocate to Ann Arbor for however long we need to be there, or a memorial service if we end up needing one. There are also links here if you’re able to provide a meal to support us while we prepare for delivery, or are still interested in looking at Luca’s baby registry. It’s so hard to plan for an outcome that feels so outside our control. Your support will help us prepare for whatever comes our way.

And if you cannot give anything at this time, PLEASE know that your prayers and positive thoughts are also needed and greatly valued. More than anything else, we hope that you will help us in wrapping Baby Luca up in love, healing energy, prayer, and support. May he defy the odds and show the world the true power of the Creator, and of community.