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Providing 'Normal Moments' for families with fragile children
By Christie Wilhite | Daily Herald Staff

Normal Moments volunteers have built a swing set for a family whose 4-year-old is not well enough to play at a park.

 

Courtesy of Normal Moments

Normal Moments volunteers might deliver food, do yard work, clean the house or just about anything else to allow families with seriously ill children to spend their time playing with and caring for each other.

 

Courtesy of Normal Moments

Normal Moments is helping the families of Bailee, clockwise from top left, Tony, Jack, Elena and twin Vanessa, and Jake and more than 50 other children in treatment for serious illnesses. With volunteers taking care of some of the everyday chores, parents are freed up to spend more time caring for - or just being with - their children.

 

Courtesy of Normal Moments

A month before she died from cancer, Melissa Fragen suggested the idea of Normal Moments as a way to help other families while paying tribute to a friend who had helped her and her mother during her illness.

 

Courtesy of Patricia Fragen

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Published: 11/29/2008 9:36 PM

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If we're lucky, we can't begin to fathom what Patricia Fragen is talking about.

Unless we've been there, we don't know what life is like when your child has cancer or any other potentially fatal illness. We can't feel the love, the sadness, the stress, the frustration, the exhaustion.

And we can't know the joy of those precious few moments outside the illness when you're just a mom and a kid, sharing a laugh - or even having a fight.

The normal moments.

But when Fragen talks about "normal moments" with parents of critically ill children, they know exactly what the Naperville woman means.

Out of a conversation with her daughter, Melissa, who died last year from cancer, Fragen is building an extended family of volunteers willing to do what they can to help parents experience more of those moments with their children.

Normal Moments volunteers take on some of the everyday chores, like house cleaning or yard work or dog walking, to give parents a little more time and energy to focus on their children.

Maybe they'll laugh together, cry together, eat a meal together, watch television together. They might even argue with each other.

But for that brief time, they'll remember what it was like before the illness and the diagnosis, when all the moments were normal.

Fragen explains how Normal Moments began and how it tries to help families cope.

Q. What is your mission?

A. Normal Moments is devoted to supporting parents with critically ill children in the home, in the hospital and via Web resources so they can spend as much time as possible sharing the most normal moments possible with their children.

Q. How do you work toward accomplishing that goal?

A. We send professional service providers or volunteers to take care of tasks such as housecleaning, lawn maintenance, and snow removal on a regular basis. We offer pet and plant care during extended hospital stays and in-home massage therapy afterward (in limited areas). We'll even read the return addresses on the mail and open what a parent wants opened if they are receiving treatment out-of-state so they can stay on top of the demands of every day.

We also provide parents with meals if they are staying with their child in a hospital that does not provide them (most do not), and we establish a food fund or free meals at a favorite restaurant near home for convenient take-out when they are not in the hospital.

We help network for service providers willing to donate time or services for special projects that arise. We have telephone support people (called I-Beams) and a Web site with links to helpful resources.

Our goal is to do whatever we can to provide parents with more time and less stress because the best gift you can give an ill child is more quality time with their parents.

Q. Who do you serve?

A. Right now, we are serving any parent of a critically ill child in the Chicago area. Due to our recent national exposure from Martha Stewart, we have begun receiving e-mails from across the country from both volunteers and those needing service. We are planning to expand Normal Moments as a result.

Q. When and why did the organization start? How has it grown?

A. My daughter, Melissa, died of osteosarcoma (a cancerous tumor that starts in the bone and grows out into the soft tissue) three months before her 17th birthday, on April 1, 2007. A month before her death we were talking about the wonderful people who had helped us and how we had all influenced each other.

Of note was our friend David, who consistently stepped in to care for our three dogs and our house whenever we needed it - for three- to five-day chemo treatments; during the 30 days in the pediatric ICU with septic shock when I left the hospital for only nine hours, followed by another 30 days recovery on the adolescent floor; or when we spent seven weeks in Houston pursuing experimental treatments - he was always there, always reliable.

He was also the one we could say anything to, no matter how irreverent, without having to worry. Melissa looked thoughtful as we talked and said, "Ya know, everyone deserves a David," and she was right.

The next day, we called a few people with special talents to ask them to be on our board, we filed our articles of incorporation together, and Normal Moments was born. It took almost a year to get 501(c)(3) status and insurance in place, but we started serving families in February and are now serving almost 60 families.

Q. What kind of successes have you had?

A. Normal Moments and I were recently featured on Martha Stewart's Dreamers into Doers contest, including exposure on her Web site, a segment on a Sirius Radio talk show and an appearance on the television show. I was honored to be part of this group of 11 amazing women finalists, being the youngest company represented. This contest also featured a People's Choice vote, which we won with more than a third of the nearly 10,000 votes. Contact from people throughout the country encouraged us to start expansion sooner than originally anticipated.

Two other local organizations have recognized the impact of our services and have hosted fundraisers on our behalf. Our now-annual Little Things Walk is co-sponsored by Cleaning Ladies 911, a cleaning service that works with our families. The Betterment Group, another wonderful not-for-profit, made us the beneficiary of their annual Halloween fundraiser.

Staff at Robert Morris College has reached out to offer services from various departments (especially business and graphic design) as an educational tool for their students and great opportunity for us to get help accomplishing our goals!

We also have had the fantastic joy of being able to celebrate two of our children reaching remission and no longer needing service. Their parents have turned around and offered their support and assistance as volunteers for Normal Moments as well.

Q. What challenges does the organization currently face?

A. Like anyone or any organization in a tough economy, we are struggling to get financial support. Community outreach costs money, as do many of the services we offer, even though we have been successful in getting discounts and some free services. Our current goal is to focus on local and national outreach.

We also are in need of volunteers and professional service providers willing to donate their time and services to our families. With winter weather threatening early this year, we are especially in need of reliable snow removal providers. When our families of critically ill children need to get to the hospital, they need to go now, without having to worry about shoveling out first.

Q. What do you wish the community at large knew about the organization?

A. Our organization's name, Normal Moments, elicits entirely different reactions from those who have been in a health crisis with a loved one and those who haven't. People who have never faced watching a loved one battle a long-term illness or stood helplessly by while someone so sweet and so innocent suffers through the side-effects of chemo hear "normal moments" and say "Oh, that's nice." People who are going through it or have been there react with wide eyes and a quick breath in. "Oh my gosh, that's exactly it," they say. "That's what we miss most - just having a normal family moment."

The question is, how do you get people who haven't been through the trauma to understand just how much something as simple as having your house cleaned can mean toward making time for your own normal moments without making them endure the pain of experience?

Q. How can readers get involved?

A. Start by visiting our Web site, normalmoments.org. You can donate, sign up as a "David" (all our volunteers are called David to honor the original one), offer your professional services, or register as an "I-Beam," a support person who has been through a similar experience willing to be on-call to chat with a stressed parent as needed.

We often get special requests from families, so let us know what you can or will do. We had a family request someone to come play Santa before the holidays for their child who cannot go to the mall. We built a swing set for a 4-year old who cannot go to the park to play with other kids - you never know how we can use your special talents.

Services also can be requested on the Web site.

Lend a hand

Vital statistics

Number of requests for help: Normal Moments is growing as more hospitals hear about it. It currently serves almost 60 families, some facing at least three and a half years of treatment for children with acute lymphoblastic leukemia.

Annual budget: Originally estimated $63,000 for 2009 to serve the Chicago area; may increase to reach out nationally. Normal Moments' goal is to avoid using individual's donations for overhead expenses unless given express permission to do so because most people want to help a family directly. The group seeks corporate support, foundation grants and matching funds to cover outreach and operating costs.

Sources of funding: Individual donors and fundraising events, one couple donated a portion of their wedding gift money, matched by the bride's parents; employer's matching donations; a one-time gift from "The Martha Stewart Show"

Full-time employees: 0

Volunteers: About 60 are signed up via the Web, though not all are active yet because they must go through a fingerprint background check and training first; also three service providers donating services and a number of restaurants have provided free meals for families

Wish list: Grant writer; snow removal services; cleaning services; those willing to sponsor a family for Christmas, Hanukkah, Easter or other holiday; volunteers; handyman or various contractors willing to donate services to families in need; financial support

To donate: normalmoments.org, tricia@normalmoments.org or Normal Moments Inc., 1318 Baylor Court, Naperville, 60565

To volunteer: (630) 888-8111 or tricia@normalmoments.org

Info: (630) 888-8111 or normalmoments.org

Talk back

If you'd like your charity, community organization or service group featured, contact Christie Willhite at (630) 955-3536 or cwillhite@dailyherald.com.