Caregiver Diaries: For the Love of Sev

I met Nanett Prausa in 1999 when our boys were babies and we were both part of an email listserv for parents of children with microcephaly. Through that forum we could talk to other parents on a daily basis about feeding problems, seizure treatment, growth and vision issues. It was a great way to pool the collective wisdom about how to care for babies and children with neurological challenges.

We became even closer friends when Nan and family moved from Texas to Florida in 2003. Nan’s husband, Randy, was in active military duty with the Navy at the time, and I was a single mom, so we were able to spend some free time together. Her Sevi and my Daniel were born just months apart, and soon after I moved to a different home, the boys started attending Pre K together in an elementary school near the beach.

Nan knew during her pregnancy with triplets that Sev, or Baby B as they called him) would be born with the potential for severe developmental disability and neurological problems.   He was not developing along the same patterns as his two sisters, Peyton and Alex. They told her and Randy at week twenty of her pregnancy that Sev was microcephalic.

Doctors offered selective reduction as an option for them. Eliminating Baby B from the equation would put to rest concerns about his development. The Prausas could finish the pregnancy with twin girls and never have to worry about the baby with the question mark tied to his future. Nan and Randy looked at each other and knew it was not happening. She says that they never even discussed it, and when it was brought up they changed the subject every time. She was shocked to even hear abortion mentioned, because they had waited so long for the pregnancy. This baby, Baby B, would be included in their lives, no matter what challenges came with him.  She tells me that she and Randy made a conscious decision very early on that Sev would not be defined by his disabilities. She says, “We couldn’t get away from the reality, but we could limit the limitations.”

Two years after the triplets were born; Nan and Randy had a surprise baby boy that they named Chase. Nan joked when he was small that he lived up to his name, always running and playing at high speed. With triplets and a little boy to keep occupied, they spent a lot of time out of the house finding fun, active things to do. When Sev was three, Nan and her mom headed out with the four kids to a water park on a beautiful, sunny day.

Every water park has a slide, and this was no exception. It was her mom’s idea for Sev to experience it, and she found a way to make it happen.

“We climbed that huge hill with many eyes on us. It felt like the world stopped just to see those two women with the little boy in the wheelchair take on that mountain. We made it to the top, and I got on the mat. Mom handed him to me, we got settled and off we went. About halfway down I realized we hadn’t really thought about the end. The splash. The pool. But his smile was huge and his laugh was heaven and I knew it would work out. We did splash big. He did go under the water a bit. But when the wave cleared, he was still smiling and I knew we could conquer mountains if the adults in his life were willing to keep an open mind and try.”

“My philosophy is to try things. It may not work out, but that’s true for everyone,” she says. Hearing her tell that story impacted the way I approach things with my own son.  It’s funny how one day in the park can have such a ripple effect when you’re talking about creating a meaningful life for a child with profound disabilities.

Living so close to Orlando means that trips to Disney World are a favorite for the Prausas. Nan shared this story with me, and I think it paints a pretty good picture of how they roll.

“The triplets were six and Chase was four. After a round on Test Track at Epcot, Sev threw up. He never throws up on rides. The kids handled it well, although it did cause a big scene. He was already having trouble with bowel movements, so we went back to the hotel and gave him the chance to have one with no luck. We were already worried, and since he had thrown up with no good reason, we knew we needed to go home. We called them in and explained our concern and the need to be near our home hospital, not three hours away if Sev got sick. We told them we needed to leave that night and wouldn’t be spending the next day at Animal Kingdom.”

“I braced myself for what I pictured the four and six year old responses would be to giving up a night in a hotel and a day at Disney. I was prepared for tears and anger and sadness and arguments. All I got was concern and help. They immediately began to gather their stuff. We left the hotel without any drama at all. They knew Sev needed this and they gladly did it. I still get teary eyed to this day. I had never been so impressed with three little ones in my life. Through the years, we’ve had lots of benefits and lots of drawbacks due to Sev’s concerns. They know it just comes with the territory and they enjoy the good and move on, away from the bad. It’s hopefully something that will follow them through their lives.”

Nan says, “I hear all the time from others that there is no way they could do what I do. I find that incredibly hard to believe. I don’t want to belittle the life before us at all. Being the parent of a child/adult with profound care needs is an exhausting, never-ending job. We get very little sleep, our time is rarely our own, our muscles are weary and our backs hurt. We’ve turned down so many invitations that very few come in now. People just assume we won’t be able to make it. Our days are dictated by his needs and his medical concerns. We are on pins and needles often with his seizures. I can see that from the outside it does seem incredibly overwhelming. Truth be told, from the inside it is as well. But he’s our son. Our little boy. He’s the life we hoped and prayed for all those years. There are very few mountains we wouldn’t gladly move for him and even fewer moments we wouldn’t gladly spend helping him get through his day.

Nan teaches fifth grade at the elementary school where both of our boys attended from pre-K to fifth grade. In those days she could easily look in on them and keep me aware of the behind the scenes goings ons. Together, we made sure the two were included with the rest of the student population as often as they could. This meant participation in music class and in special programs that their typically developing peers were in. The MOVE (Mobility Opportunities Via Education) program at their school made sure they were up walking and using standers throughout the day. Both boys made huge strides with their motor skills in this program. Elementary school was a great period for all of us.

One summer ten years ago, Nan and I took our kids to a Joni and Friends camp near our homes in Florida. We stayed in a hotel just a few doors down from one another. The JAF camps are for families of kids with disabilities. It was formed by Joni Erickson Tada, a quadriplegic, with the intention of giving parents some respite time in a family setting. During the day volunteers took Daniel and Sev and our other kids for activities while Nan and I ate breakfast, walked the beach and just enjoyed each other. When you’re with Nan, you laugh a lot, because she finds some humor in just about everything.

The temperatures were in the nineties that week, and when we weren’t at a camp event with the rest of the attendees, we spent our time in one of the two pools at the hotel. Our boys were still small enough for us to carry onto slides and give them the chance to feel the smooth flight down and the cool splashes at the bottom. I’m usually one to tuck Daniel in early, but that week we all stayed up past ten o’clock every night letting other kids enjoy the pool under the moonlight. Having that shared family time with the two of us rooming so close together was unforgettable and rejuvenating.

We often talk about the idea of a special needs village where we and our close friends can live near one another to share support and community. Our original online group splintered off as seven of us worked on scrapbooks called circle journals in 2004. We each chose a theme, mailed to the next person on the list until it circled back to us with completed pages from each mother. We call ourselves the Molehill Moms, with the idea that we try to make the mountains in our lives into something manageable rather than blowing things out of proportion (mountains into molehills). We’ve stopped scrapbooking, but occasionally will send a notebook around for a diary of what’s happening in our lives apart from the online things we share.

Over the years we’ve become extremely close. It’s where we turn for understanding from those that know us well. Nan says it’s her sounding board and biggest source of support beyond family. I agree. We are spread out from coast to coast, so our village is limited to our computers and smart phones most of the time. Still, it’s a very concrete network that sustains us all.

The teen years brought some changes. Both boys needed outside physical therapy to help with muscle spasticity they’d never had before, and to work on regression in walking skills that happened gradually after they left the MOVE program in elementary school.

“I used to believe Sev would be about five times behind his sisters and we’d just have to be patient. It took years to learn that it doesn’t work that way. His brain isn’t wired for the more complex skills and he eventually slowed dramatically and then stopped gaining. Now we’re just working to keep the skills we had. Puberty was difficult and we saw a huge back slide in abilities. That was a hard pill for me to swallow because they were so limited to begin with.”

None of that has kept them down, though. Last year the whole family drove to New York City for the first time, and braved the streets and subways with Sev in his wheelchair. Let that sink in. They drove 1,000 miles with four kids for an adventure in a city they’d never been to before. They took the subway with a teenager who cannot climb stairs. They are not afraid to take risks and see how it all plays out, and they’re willing to change plans if it looks like things won’t go well. Despite daily seizures that are severe, they keep on planning and doing.  Both Nan and Randy (a now retired Navy Chief) aren’t afraid to live life on the move with Sev at the center of it all.

CarolynMurrayCarolyn Murray is a registered nurse and writer. Over the past twenty years she has written articles for Nursing Magazine, The American Journal of Nursing and various online forums. In 1994 ARE Press published her book, Walking the Spiritual Walk, a record of her own experiences in relationships, work and life. Carolyn began writing about parenting and disability in 1998 after the birth of her son, Daniel, who has multiple disabilities related to a rare brain disorder. She loves hearing from others engaged in extreme parenting, and welcomes your emails. She can be reached at holisticnurse82@yahoo.com. Carolyn lives in Florida with her family.
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