“No one ever told us it was going to be easy,” says feisty mom of two, Lotte Diomede, from Sudbury, Massachusetts.

Lotte moved to the Boston area from Denmark in 1994, marrying her husband Gary in 1998.  While pregnant with their first child, doctors told Lotte at her seventh month checkup that her son would be born with water in the brain, a condition known as hydrocephalus.

She was advised to go home and “enjoy” the rest of her pregnancy. Overwhelmed and angry, someone told her to pray. But Lotte felt she had been a good mother; she didn’t smoke or drink alcohol or coffee. Plus she had stayed fit.

Lotte knew she had to fight for Nicholas. She transferred to Beth Israel and sat with Dr. Jodi Abbot, an obstetrician and gynecologist, who gave her the answers she needed.

“I felt at least I knew where to focus and how to manage the rest of my pregnancy without going insane,” explains Lotte.

According to the Hydrocephalus Association, one to two of every 1,000 babies are born with hydrocephalus, making it as common as Down syndrome and more common than Spina Bifida or brain tumors. Early treatment increases the chances of a better prognosis.

Nicholas arrived four weeks early via C-section and  was transferred to Children’s Hospital in Boston for surgery to implant a shunt that would relieve pressure in his brain.

And throughout the first six years of Nicholas’s life, he underwent surgery after surgery: an operation on each thumb to increase his grip strength, feeding tube surgery, shunt surgery, a shunt revision and two hernia operations.

“My son never said 20 words and yet he’s getting tested every single day of his life,” says Lotte.

The hardest part about having a child with disabilities, says Lotte, is that everyone seems to have a hand and influence in what your child does every day. Nicholas has 13 specialists. “Sometimes I have to say, ‘Stop. It’s up to me!’” says Lotte, whose number one priority is to help her son with his communication and mobility.

Her son is now a happy 10-year-old brother to his 8-year-old sister, Anna Belle.  “She’s an amazing little girl, and Nicholas is a trooper and brings good karma to us all,” says Lotte. “I love them both the same.”

Lotte volunteers at her children’s schools and learns all she can about services for children with disabilities. She volunteers as co-chairperson at the Massachusetts Commission on Disabilities so she can keep up with the law. Her spirited get-it-done attitude ignites the people around her, and in 2008, she spearheaded a fundraiser to help build a universal playground for all children, including those with disabilities, at Haskell Field in Sudbury, Massachusetts.

“I was just hoping for a handicapped swing, and we got a whole new park!” exclaims Lotte, who has received many letters from families who are now able to take their children with disabilities to play at the park.

In 2009, she filed her own 501-C3 and founded SMILE MASS, an acronym for “Small Miracles in Life Exist.” Her latest “fun”-raiser is a scavenger hunt by limousine to help raise money for special beach wheelchairs. She is determined to give more children with disabilities the chance to enjoy a day at the beach with their families.

For many children with severe disabilities like Nicholas, everyday necessities such as getting out of bed, breathing independently, getting to the bathroom and eating require constant help from family, friends and teachers. Though Nicholas is considered nonverbal, he finds ways and simple words to express his feelings and enjoys helping out with everyday family rituals like setting the dinner table and reminding his sister with a nudge that it’s time to get ready for school if she’s running late.

“Nicholas has a smile that will melt your heart,” says Lotte, “and a courage which is unreachable. He loves when we are all together; it makes him feel safe.”

Lotte’s newest idea is to create a home that is totally equipped for families who just want to enjoy a vacation at the beach together. She was stunned to learn that most hotels do not have bathrooms with roll-in showers; as bath stools can only get you so far if you have to hold a child up while bathing him. And for Lotte this means lifting Nicholas, who has little muscle tone and weighs 82 pounds now. For 12% of children in Massachusetts who are severely handicapped, traveling is a huge challenge.

“I dream of a vacation place where we as a family will have facilities available that fit all of us, a place where we can have the opportunity to build happy, healthy memories as a family,” she says.

When asked how she stays motivated to give back to others, Lotte’s answer is always the same. “I have a choice every day to play the victim or the contender. My kids need me to be the best that I can be. I expect them to do their best, so I have to somehow show them the way.”

If you would like to make a tax-deductible donation, go to smilemass.org or mail a check to SMILEMASS, 56 Dutton Rd., Sudbury, MA 01776.

Take 10 with Lotte

Words to describe my family: We are fun loving, and we take care of each other.

Best part of my day: Right after the kids leave the house and I have my cup of coffee. I get 20 minutes to just be me which sets my day on the right path.

Current family obsessions: Smile Mass – Anna Belle sees the signs on her way to school and she knows it’s Mommy’s dream for families. 

Things that drive me crazy: That Nicholas can’t have the privacy and dignity a 10-year-old boy deserves when it comes to the bathroom and grooming. As long as he can’t stand up, he’ll always need assistance, but we’re not giving up.

Best things about the town where I am raising my children: No one cares if you are the CEO, a partner, or a stay-at-home mom. We all hang out in a nice community. It’s hard when you have no family around, so I feel privileged that I have friends who step up when things get tough.

A typical day:  I’m up at 5:30 in the morning to prepare Nicholas’s food, change and hook him up to his feeding tube. I get the kids off to school, check my lists –  the dummy list and the never ending list –,  start phone calls and fundraising, volunteer, get the kids to after school activities and appointments, fix supper, get the kids into bed, read our bedtime stories, and then I’m up until 1 a.m. sometimes working on raising money for disabilities.

What would make my life easier: More hands on deck and more hours in a day. I never feel like I have enough time.

Thoughts about Thanksgiving this year with my family: I make a turkey and the kids tell me what they want to eat. Anna Belle loves to crack open eggs and help with the stuffing. Nicholas helps set the table.

Comments on the upcoming holiday season: Sometimes we make dinner and bring it to the staff at the hospital.

The best thing parents can do to support a mom or dad parenting a child with special needs: Be a friend.  Let your children say hi to a child with disabilities. Just be happy for people no matter what.
 
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