A Conversation With ... Michelle Cramer

Where did the idea for On Angels’ Wings come from?
Now I Lay Me Down to Sleep is a similar national organization with some success – they’ve been on “The Today Show.” I was taking pictures for them. The local chapter kind of dwindled away, so it became one of those things where it didn’t work out, but my heart was in it and I couldn’t let it go.

Last year, I was put into contact with a little boy who had spinal muscular atrophy. I took pictures for him when he was 7 months old and kind of fell in love with him. It was a totally different experience. Before I was taking pictures of babies who had passed and there was no opportunity to connect with them. He was responding to me and smiling, and I connected with him. Three months later, his condition deteriorated and I took pictures of him, and it ended up being six days before he passed. Then I did pictures at his funeral. He had a huge impact on my life. I left the funeral thinking, “This has to happen now.” That was in May 2013, and I had the nonprofit registered by July.

Who are the families that you serve?
We provide photographs for families facing the risk of child loss, from maternity to 18 years. That includes prediagnosed conditions in the womb. We have a lot of trisomy babies, which is a genetic disorder with chromosomal issues. We’ll take pictures of them in the womb, because in most cases, they only survive a few days. But we do have one who just reached her first birthday.

The families are dealing with medical bills and doctors’ appointments and all these extra things – they don’t think about getting pictures done. What we’re trying to do is give them something they might not have been able to afford and give them an opportunity to focus on the good things, and not so much the impending, sobering issues.

Along with trisomy and spinal muscular atrophy, you also work with leukemia and spina bifida patients. How do you connect with the families experiencing these health issues?
Our referrals come through the hospitals and word of mouth. A lot of families that have genetic disorders or leukemia create Facebook pages for their children’s journeys. We come across those and reach out to the families.

We also partner with several support groups in the area. Our services go beyond giving the families pictures. We stay in touch and follow up to see they have the support and encouragement they need. We have a counselor ready and willing, and work with (Mommies Enduring Neonatal Death), a support group in town. We also partner with foundations, like the Logan Ruth SMA Foundation, and grief counselor Tamara Bell and Lost & Found. Our reach goes beyond giving people pictures.

Is there any cost to the families?
No. They get a minimum of 30 images sent through our website. We give them access to a password-protected gallery on our website, so they can share with friends and family and download through that.

What are the funding mechanisms?
Donations and periodic fundraisers. We have an event coming up Oct. 4, and in order to fund that, we had a Facebook auction. Making Memories Day is on Oct. 4 from 2–7 p.m. at Randy Bacon’s studio and gallery. It’s basically a carnival event open to the community and focused on giving families an opportunity to spend time together. We’re going to have carnival games, booths, a candy buffet, popcorn and a princess tea party – which we filled in five days with 50 girls. As You Wish Princess Parties in Branson is donating time with seven ladies dressed as princesses. We’re doing a superhero party for the boys. Our goal is to have this as an annual event.

With one year under your belt, what’s been the most difficult thing as a nonprofit startup?
Getting the word out. When we first started planning for this event, our intention was to have businesses sponsor booths. That didn’t work. Because we’re so new, nobody knew us. We had to revamp and raise the money ourselves. Awareness is No. 1.

Have the protections of medical patients under the Health Insurance Portability and Accountability Act been a hurdle?
No, not at all. We have a release that every family signs with every session. They have the option to say whether we can use their pictures for our website or Facebook. There is a release of the hospital and us of any liability. Nurses, a lot of times, will tell the family about our service. When the family asks for us, we’re allowed in the room with the understanding we’re not going to share their information unless they’ve given us permission.

How many photography shoots has the organization completed so far?
It’s so sporadic. So far, we’re around the 30 mark. We had a huge influx from February to April and it’s tapered off since then.

We’ll also do (neonatal intensive care unit) pictures. We haven’t, because we haven’t gotten in that door yet.

The deciding factor is that if there’s risk of losing your child, we want to give you something to hold on to. It’s very sobering and it’s really hard for people to talk about.

We have families that have come across our service and lost a child and say, “I wish we would have done this.” Families in these dire situations and the emotions, they can’t handle the grief and don’t want to think about it – in that moment it’s not something they want to do. If a family can’t handle looking at the pictures, we’ll hold on to them. They’re always available, for when a family says they’re ready. We’re not going to push, but I’ve see first-hand what it means to a family to have these pictures.

What’s next for the nonprofit?
We don’t exclusively offer this in Springfield. We have photographers in St. Louis and one in Columbia. We’re currently seeking people in Rolla, Joplin and Kansas City. Our goal is to expand south of the Interstate 70 corridor and get that covered. We’ve had interest in other states. We want as a board to be well established, with our system, before we expand. We need to be able to control those things very well. It’s vitally important to us that things are done correctly and that the families are prioritized.

Other lessons learned?
Flexibility in how you approach things and why you approach things, which often means finding the best way for the resources you have. Our first-year budget was $4,000.

I get a vision and have these expectations and they don’t work out. I have a board and I’ve learned by listening to their suggestions. They’re amazing women and contribute wholly to what we do. That’s been really beneficial. As one person, you get one idea and you roll with it, and they can throw different things at me. They’ve helped to make me flexible.