Written by her mother, Alyssa Schuck
Nattaly was originally diagnosed in February of 2014 with alveolar rhabdomyosarcoma. She finished chemotherapy in December of the same year. There was also a bout of radiation in there somewhere. We attended her Make-A-Wish trip during this time of remission! In May of 2016, she was diagnosed again with the same form of cancer—just in different areas of her body— and she started another chemotherapy regimen. This lasted six months, and her body was responding poorly. So we stopped the regimen and lived life the best we could. This is when we went on our first Lighthouse retreat in Florida! She was then diagnosed again in June of 2017; she died that September.
As we were living with cancer, the hardest part was delegating time and emotions. Planning life was difficult; we were juggling jobs, school, chemotherapy, radiation, family time, time to have fun, and time to just let our kids be kids. We lived life one day at a time, which was both a blessing and a huge challenge. Our family could not plan life outside of the next hospital visit.
Delegating emotions was just as complicated. I personally went to the hospital five days a week, needing to be supportive and encouraging to a four, five, then six-year-old who needed me to be there for her emotionally. Then my husband needed to put his emotions on the back burner so he could effectively go to work and do his job every day. Our son Mason was just a baby, so he just needed lots and lots of love. So when do you have the freedom to be sad and happy and scared and filled with joy?! During this journey, these emotions were non-existent. We were in one emotional state for years: survival.
The most unexpected part of living with cancer was the community support. We had so many people and organizations do fundraisers for our family, so we didn't have to worry about money. Nattaly's preschool teacher organized a bracelet sale, a woman I worked with organized a Bowl-A-Thon, and Glenn's work rounded up donations at a union meeting. We also had childhood cancer organizations such as DC Strong organize family days where we could spend time together with other cancer families, and that made such a huge impact on our emotional wellbeing. Shields Of Hope organized a holiday drive for families struggling with cancer that aimed to provide families with a holiday meal and presents. These individual people or groups would call and say, "Hey I have something that I think would help your family.”
The other side of this hit after Nattaly died and we had a chance to reflect on how insane life truly was for us during that time. Glenn and I had a difficult marriage; we weren't seeing eye to eye on what was important, and we were emotionally exhausted. Our life was moving so fast that we couldn't even comprehend what was happening, let alone figure out how to deal with what was happening in a healthy way. Looking back on those years makes us go, "How? How did we survive that?" Surviving was hard. Surviving is still hard. The most unexpected part is still the community that loved and supported us through our journey. I will never underestimate the power of a friend providing a warm meal ever again. Looking back on how many small gestures were geared towards our family and how underappreciated they were at the time is still embarrassing to me. But I also think that there is a little grace in my behavior; I was dealing with life the best I could.
Hope during this time came easily because, honestly, I was sent an angel as a daughter. Hope was never lost with her; she told us so many times that she was okay, and we believed her. When an opportunity came to do something adventurous, she was the one who said, "Let's go mom! We only have today!" so we would go. Nattaly was our hope. I am still amazed by it to this day.
I would encourage families in a similar situation to listen to your kids; they know what they need better than we know what they need. I listened to Nattaly when she said, "I want to go ride my bike," right after chemotherapy. I cannot imagine puking and riding a bike at the same time, but she found a lot of happiness in those moments. Kids are beautiful creatures; we can learn a lot from them.
Our first Lighthouse retreat gave Nattaly her last vacation as a healthy human. This was obviously something we did not know when we attended retreat in March of 2017. And then Lighthouse's Sunrise Retreat was the first real time that we had in our "new normal.” Our family took a week off of work and school after Nattaly died, but most of that time was spent planning a memorial, attending the memorial, and then just being exhausted, sleeping, and crying. Lighthouse gave our family of three instead of four a little normalcy and peace, and a beautiful night sky to cry under. The Sunrise Retreat gave us friendships and mentors that we still carry in our hearts to this day. A volunteer came up to us at breakfast and handed us a Kit-Kat—Nattaly's favorite candy—and said, "I remember this being her favorite and I thought of you." Little moments like that made us feel love and connection.
Before, losing a child made us feel like people felt sorry for us, or like they wanted to support and love us, but they couldn't understand how we were feeling. Lighthouse surrounded us with not only volunteers who truly got where we were, but also other families who undoubtedly felt exactly how we felt—not only the week we were there, but the weeks leading up to and even the weeks following the time we spent at Lighthouse.
Lighthouse has been full of surprises for our family, and we will forever be grateful for what the organization has done for us and for other families exactly like ours.
To learn more about the Sunrise Retreat, our bereavement experience for former Lighthouse families who have lost a child to cancer, click here.
During the month of September, we will be sharing stories written by some of the families who will be attending our Sunrise Retreat this month. We hope you will join us in praying for these families who have endured unimaginable loss, that God will use the week away with their family and Lighthouse volunteers to bring healing and hope.
Our fundraising goal for Childhood Cancer Awareness Month is $30,000, because that’s what it takes to put on a Sunrise Retreat. From meals and gifts to Parent’s Night Out, sibling activities and nights of remembrance, every single dollar we receive in September is going to be invested into providing a restorative experience for families who have lost their child to cancer. When it comes to our growing Sunrise Retreat program, more funding means more families served. Whether you can give $1, $100 or $1,000, please join us in honoring the memories of the children we’ve lost by providing support for the families who will never forget them. Visit this page to learn more or donate.