Living God's Grace
Nan Prausa is one mom who has risen to the challenge of mothering with tremendous strength and grace. With triplets and another young child to care for, her life would already be full to overflowing, but one of her three firstborn also has special needs.
"We knew of concerns as early as five weeks gestation," she says. "We knew we had a multiple birth and did an ultrasound to see how many. We were surprised by the triplets, but knew the chances of a multiple birth were high with invitro cases. We implanted three embryos and all three took on the first try. By eleven weeks Sev's amniotic fluid was low, and by sixteen weeks, they could tell his head size was lagging. He was tracked closely throughout the pregnancy and his body continued to grow normally, but his brain did not. He was born at 35 weeks and came out screaming the loudest scream of all three...what a relief. He never needed oxygen or any type of support...just had a tiny head at 27.5 cm."
Sevi remains severely microcephalic with no head growth since 15 months of age. He is also, like so many of our kids, a teacher.
"Sev introduced me to the person God intended me to be. I think many of us go through our lives only using a portion of the potential we are blessed with. Sev has taught me to slow down and look for things that are beautiful and wonderful regardless of how small it may seem. He's taught me to appreciate and accept help when it's offered and because of this I look more readily for ways I can be of help. He's taught me that what's on the outside isn't always reflective of all that's there, and I find myself looking more closely at situations now to see what may be there that I'm just not seeing."
Nan is the moderator of the Yahoo Groups microcephaly listserv. She is compassionate, down-to-earth and wise. She wants people to know that her family is making it...that they are not a tragedy, they are a family who loves life and is living it well.
"I know that some people see us and think 'there but for the grace of God go I,' and I know it's really 'there for the grace of God am I," she says.
"I'm busier than most and I have more stress than most, but I know I'm happier and more grounded than most as well. I have joy in my life like very few people I see. And for the people who pity Sev...well, they just don't know. This is his life, it's normal to him and he is one of the happiest people I know."
Nan credits her husband, Randy, with carrying a lot of the load. "My husband is fabulous," she says. "He loves Sev and really takes on much of the responsibility when he's home. He dealt with most of the sleep deprived nights by taking Sev out into the living room so I could sleep...what a blessing. He's been gone out to sea (active duty Navy) for about 8 months now and we are living at home with my parents."
She says her mother is there for her completely, and her sisters and dad help too. Randy's family takes care of the children during some of Sev's therapy and doctor's appointments. "I am building an extended support system at the new church we recently switched to. Many loving, kind people are circling around to help."
Nan has also learned to be more assertive since Sev came along. "He is a very hard stick for blood draws and IV's. I now have a very clear plan I ask them to follow and it has helped tremendously. I tell them he only gets five sticks...two from the first person and three from the next. This forces them to get their best people in there first of all and has saved Sev many sticks and pokes. Prior to this plan, they went up to 14 times at once. I try to be as endearing as I can while making this request, but I let them know I am serious about it."
This carries over to school as well. "He gets lots of attention now that he is the only one there in the afternoon. I am able to come and go as I please to meet with therapists and his teacher since no one else is there to be bothered," she says. Her involvement has paid off.
"They have taken a huge interest in Sev and are excited about the progress he's been able to make. He's begun spoon-feeding by grabbing the spoon from our hands and directing it to his mouth. He's assisting in putting his shirt on and off. He also grabs our hands to go to tall kneeling and shifts to standing that way," she adds, "His physical therapist feels confident he is ready for a walker and we are working on that. All this since the beginning of the school year. I really credit a good exchange of information on all our parts and the excitement and pride we all feel in Sev's accomplishments."
Nan is a strong, positive woman, and she understands that ongoing grief is a part of parenting of a child with disabilities. "I remember when Sev was little and I felt like I had it together. We were going to be just fine. Some of the more experienced members of the online support group talked about grief and the stages and how it is a cyclical thing, it comes and goes."
"I thought at the time that it didn't apply to me. I had dealt with everything and had come out on top. Then his third birthday came along and he wasn't walking and it hit me hard. I was depressed and didn't want to do the therapies any more...I kind of just burned out. Then it all came back to me...the discussions on grief and I realized I had set some goals for Sev and for me, that I could get him to walk by three. When that didn't happen, I began to grieve all over again. I am so grateful for those discussions. I was able to see what was happening and refocus."
Nan also recognizes the tremendous impact that her son is having on the people around him. "Everywhere we go, people are drawn to Sev in the most amazing ways. We visit my grandmother in the nursing home each week and Sev has so many admirers that we can hardly get back to her room. Many of them are younger adults who have disabilities and seem to really connect with Sev. They look forward to seeing him and he shines and glows in their attention."
She goes on, "At his school, many children flock to him and love him. These are children who will forever look at disabled people differently. Though he can't talk, walk, or even crawl, he touches people beyond anything I can do with all of those skills. It's his joy and love and hugs and easy acceptance. It's very humbling and inspires me to look up and say hi, smile, or offer a compliment. Seems small, but it sure makes a difference to most people."
Written by Carolyn Murray
