Tag: paul newman camps

A Mom’s Perspective on Camp

In honor of Mother’s Day, we want to recognize moms everywhere – for their tireless hard work, their unconditional love, and their super-power strength.  We were able to sit down with Colleen whose son Tommy is a veteran camper at Camp Michitanki (Transplant Camp). Colleen shares with us what Mother’s Day means to her family, what it was like to send Tommy to camp for the very first time, and why she thinks camp is so important.

With Mother’s Day just around the corner, can you tell us about your family’s traditions?
In our family, Mother’s Day is still very much about my mother and my husband’s mother. We are so fortunate to have them both in our lives. Every year, we typically go to church as a family and do brunch or dinner that day. Being together as a family is what is most important to me. I’m blessed that my kids usually make me some kind of homemade card or gift. It is so special to receive that from them knowing they paused to think about what mom means to them.

Can you tell us about Tommy’s history, and how you came to find out about camp?
Tommy was born with a severe congenital heart defect that caused him to have five open heart surgeries in the first five years of his life, along with several visits to various specialists and stays in the hospital. Unfortunately, Tommy’s heart began to fail him in 2007, and he was listed for a heart transplant in 2008. For one year he waited; he got weaker and became more dependent on multiple medications to keep his native heart going until his “gift of life” would come. His new heart came on June 3, 2009.

After Tommy received his life-saving heart transplant, we had a pretty rough year with ups and downs, both medically and psychologically. When his transplant coordinator told him he could attend a special summer camp with lots of fun things to do, filled with other kids who had also had transplants, his eyes lit up, and mouth dropped open and he exclaimed, “Yes, yes! I want to go! Can I? Please?!”

Can you tell us what it was like the first time Tommy went to camp?
From a mom’s perspective, I was so excited for him that he could actually do something “normal,” and that he wasn’t scared. Knowing that the camp would be staffed with medical personnel was so comforting!

On the ride to camp, Tommy was overflowing with excitement. When we pulled up, I looked back at him and he had this huge smile on his face and said, “Mom, it’s like I’ve been waiting to come here my whole life!” With that, he jumped out of the car and ran into the camp. His fellow campers were in the dining hall and he just walked in and sat down at his table, not knowing a soul, but not hesitating for a second. It was then that I realized how neat this was; he had more in common with those kids than most anyone else in his life. I drove away feeling overwhelmed with what I had just witnessed and how far he had come to be able to participate in something like camp.

While I was very happy for Tommy, that first week he was away at camp was hard on me, wondering how things were going and wanting to talk to him. There was some updating through email, but I still remember wanting to call and check in. I had a friend who was a nurse at the camp and I remember telling her to call me if anything happened. I was tempted to text her just to see how things were going, but I worked really hard to leave Tommy alone and believed that no news was good news. That first year was definitely the hardest on me!

Tell us about what you witnessed when Tommy came back from camp. How do you think he has been most impacted by the experience?
I would say that Tommy had more of a feeling of being accepted after attending camp. Camp helped in his overall transition back into trying to be a normal kid and doing normal life. For such a long time he was back and forth between living in a sick world and a normal world. Camp gave him some validation and helped him see a light ahead. It encouraged him that he could fit back into the normal world again.

I recall telling our nurses that this camp opportunity was probably one of the single most positive parts in Tommy’s post-transplant recovery, both from a physical and psychological perspective.

I cannot express our appreciation enough and how much this meant to Tommy and to our family. I believe that camps like this for children with medical challenges are vital in giving them an opportunity to get their minds off what is different and abnormal about them. It gives them the chance to focus on what is just plain fun. What could be a better gift for a child like this?

It has been five years now since Tommy’s heart transplant. While he has lived with heart challenges his whole life, he is facing different challenges now. He really wants to play on a baseball team right now, but his body still has some physical limitations compared to his peers. There are times when he feels like he is behind his peers in size and sports and wishes his body would cooperate more. But at camp, he can be more of a leader – the activities and the kids are more at his level – it is more of an equal playing field.

Do you have any words of advice or encouragement for parents who are thinking about letting their kids go to camp for the first time?
I’d encourage them by saying that I believe camp is a great thing for these kids. It gives them a sense of normalcy to be with kids that are like themselves. At camp there are no issues of kids feeling different. I’d also tell them that it is comforting to have your child surrounded by medical staff who make sure they are taking their medications and are prepared in case something ever did go wrong.  There are so many fun things that the campers get to do and the staff, doctors, nurses and volunteers are so invested in camp and forthcoming with their time. The whole thing is just wonderful, and it is amazing that these kids have the opportunity to do this – everyone benefits.

As a quick side note, I am on the board of a support group for kids with congenital heart disease. Through this group I have talked to a lot of moms, and many of them have said that they wish there was a camp for “heart kids.”  I know there is a great need for so many kids with various chronic illnesses, and these kids often crave having friends and being around others who are similar to them. I think North Star Reach will be very well received – and I know this camp has been very much anticipated!

A special thanks to Colleen for sharing her family’s story and a very Happy Mother’s Day to all of our Moms out there!


Camp is…Inspiring

Two weeks ago, a good friend and I had a chance to volunteer at Flying Horse Farms; a SeriousFun Camp founded by Paul Newman and located in Mt. Gilead, OH. If I had to use one word to sum up my experience it would be INSPIRING. Walking into this opportunity, I wasn’t sure what to expect…needless to say, I was blown away! I had the great pleasure of meeting amazing people who will stay in my heart and mind forever.

I will always remember the sheer joy on one camper’s face after he shot a bow & arrow for the first time with roughly a dozen campers & volunteers cheering him on. The fact that he had recently finished his second round of chemo and was unable to verbally communicate wasn’t an issue; he was just like every other kid experiencing life as kids should….it was truly magical to witness! I also recall another camper proudly describing the thrill of catching a fish for the first time (she even kissed it!), with her feeding tube tucked safely in her backpack. The courage, strength, tenacity, and bravery these children displayed was indescribable.

This SeriousFun Camp provides these special children with the unique opportunity to be “regular kids” with a name and not a medical diagnosis for a moment. If you are ever looking for an organization to donate to and/or get involved with, SeriousFun is an incredible organization that not only gives these wonderful children a really cool experience but provides support to the families (heroes in my book) as well. With that said I am counting the days until the children of Michigan will also get to experience the magic of camp in the safety of their own backyard when North Star Reach is built and operating. Every kid who wants to go to camp should be able to have this opportunity and building North Star Reach will ensure that more kids do!




By: Dana Marinesi, camp volunteer