A special contribution by Lindsey Larson, Host of Live Life Full Lewistown, IL
Being a first time mom is hard. Having triplets makes it even more challenging. Add to that a rare diagnosis, and it’s ... well, interesting is the only word that I can find at the moment.
We had anticipated NICU time with the arrival of triplets. I had already done the research on various medical problems that could happen at various gestational ages. I felt prepared, but anxious because who knows what could really happen. The research I had done managed to give me a little bit of comfort. We made it to 31 weeks, which is about average for triplets. Josh and I were overcome with joy when we welcomed Hannah, Elliot, and Gwendolyn into the world. We couldn’t wait to shower them with love. After a few days of struggling significantly with breathing, low muscle tone and overall alertness, one of our babies was referred for genetic testing. This was something I hadn’t prepared myself for. This was out of my research scope. Panic set in. As we waited for results, I did the best I could to take care of our three babies but I was a wreck. Bursting into tears was almost as scheduled as pumping sessions and feedings. A Prader Willi Syndrome diagnosis was confirmed for our son, Elliot, the day after Thanksgiving in 2014.
If I’m being honest, I’ll tell you that the first year of raising our trio was a complete blur. I don’t recall most of the sleepless nights, the breast pump constantly attached to my body, the constant diaper changes. Mix in the PWS diagnosis, which brought along with it a G-tube, feeding pump, nightly GH injections, supplements, a monitor, and endless appointments with specialists and therapists. My world had been rocked by the arrival of three tiny people. PWS was the cherry on top of my new reality. Except the taste wasn’t as sweet as I had hoped motherhood would be. It sometimes left a sour taste in my mouth. This was not supposed to happen to us, or to our sweet Elliot. This is not the life he was supposed to have.
As our daughters, Hannah and Gwen, grew and reached milestones on time, Elliot straggled behind. The doctors all told us this would happen, so we expected it. But the sting of actually witnessing Elliot’s developmental delays wouldn’t quit. I can’t begin to tell you how heartbreaking it has been to watch the girls learn to crawl, walk, and talk while Elliot looked on. I cried out of joy and sadness at the same time.
Something changed on New Year’s Day, 2016 when Elliot began to crawl. It was as if something had been switched on in his brain with his newfound mobility. It opened up a whole new world for him and he could finally keep up with his sisters. As Elliot learned more, we celebrated more, and the days of crying out of frustration and sadness had more space between them. On New Year’s Day, 2017, Elliot began to walk and since then, he’s been focusing on speech. Raising triplets isn’t easy, but we’re incredibly thankful that he came as a part of a trio. Hannah and Gwen are helping to teach him social skills and language, along with everything else. If anyone can claim credit for teaching Elliot everything he knows, it is definitely these two. They have always been his biggest motivators and his most effective teachers.
Throughout this process, we have been researching PWS and advocating for our son. We found FPWR and immediately felt connected with parents and families who shared our story. Meeting these people and discussing our struggles, hopes, and love of our children helped us feel at home. This felt like family to us. One thing stood out to me as we shared our stories with this group of people: we all have hope. We continue to dream and hope that our children will grow up to lead happy, independent, fulfilling lives.
Josh and I support FPWR and its mission because we believe in Elliot. We also believe in science. We ferociously support the researchers who work to find therapies, treatments, and drugs to help ease the burdens of PWS for our son and everyone else who suffers from this diagnosis. Even if Elliot isn’t able to benefit directly from some of the research, we believe in fighting for the future generation of PWS families. No parent should have to stand by while their child endures this.
Elliot continues to surprise us every day. Looking at how far he’s come and how much he has achieved, I’m brought to tears. I know that we have MANY more hurdles to conquer as he gets older, but I believe in him and I believe in the science that will find a cure for his hunger. He is writing his own story, and he’s just getting started.