Here in Maryland, summer traditionally means camp for kids. Most of Zack’s friends attend day camps of some sort. Zack has never attended anything more than a part day VBS and then only at our church where people are very aware of his needs and I am close by. I am not aware of many camps (other than ostomy camp) where there is staff to help someone empty their ostomy bag, give medication, and to help change wafers. Add in his learning disabilities and camp seems pretty out of reach. I have been waiting for the day when Zack asks if he can go, but thankfully that day has not yet arrived.
Sometimes life gives you gifts you did not even know you needed. A few weeks ago, we were delighted and excited to receive an email inviting Zack to a special camp at our new church called Thrive Camp. Our church has a pretty amazing ministry for middle school, high school and young adults with special needs. The younger kids are always welcome, but there is not a specific program just for them. Thrive Camp was developed just for this age group and included siblings as well.
Words can never convey just how wonderful this week was. I was able to meet other moms like me. I have lots of friends and almost all of them love my boy. But only a very few understand life with a child with special needs. I get that and do not expect others to be able to grasp our life. However, making new friends who understand our challenges was like receiving a special gift. I thought the camp was just what Zack needed. Turns out, I needed it too!
The organizers of the camp thought of every little detail. Every dietary need was considered. Every medical need was addressed and there was a nurse available at all times. You know that made my day. Not many people really want to deal with intestines…
Camp was run a bit like VBS in the morning with a fun field trip in the afternoon. On the first day, the kids went to Meadow Creek Farm and Calm Acres. This farm is run by a lady with the biggest heart for people of all ages with disabilities. The kids had a picnic and hiked on a trail full of hidden wind chimes and swings. The highlight of the afternoon, however, was being able to paint on actual horses. In a million years I would never have thought to do that! I am so glad that God made so many creative and compassionate people! Check out these pictures.
Zack admiring the horse he helped to paint.
Come on! How cool is that?
The next day, the kids went bowling in the afternoon. Maybe it was all of those winters spent in cold climates like Montana and North Dakota that started our fascination with the sport, but all of my kids love to bowl. Zack had so much fun and could not wait to tell me how he did not have to wear those uncomfortable bowling shoes, that he was able to use the ten pound ball and, most importantly, he was able to have pizza and a fountain drink of lemonade. What more could a child ask for?
Friday saw the group headed to Spring Meadow Farm where they learned how soft serve ice-cream and Sno Balls were made. In addition, there was a scavenger hunt, a petting zoo and the farmer let them plant their very own sunflowers. Zack cannot have ice-cream because it makes his belly hurt like crazy. While all of the other kids got to have ice-cream, the staff let Zack make his own Sno Ball with all of the orange syrup his heart desired. I think he will be talking about using the machine to crush the ice for a long time!
On Saturday, a sweet family invited all of the campers and their families over for a BBQ and swimming. It was a fun afternoon and Jim was able to connect with some of the dads. That made me happy.
The hardest and best part of the week for me was watching Zack. He was happy (best). He was free to be exactly how God made him without his mama telling him to sit still, to look people in the eye when talking, or to change this behavior or to a more appropriate one (best). Not being neurotypical, learning all the social cues in life is pretty exhausting and just being able to be himself and to be loved on just as he is brought such joy to my heart. It was hard because I realized how many times we try to change his behavior to help him fit in (which is necessary at times) and how difficult that must be for him. It’s like asking an introvert to behave like an extrovert. They can act like that for a while, but it is very tiring. It was also hard because I realized that he actually fit in really well at camp. Let me explain….
For years people had been telling us that Zack would catch up. That he would behave more like his peers naturally. Obviously Jim and I realized that there was something different, but other than his chromosomal abnormality which nobody can really explain the significance of, his diagnosis has been elusive. It was easy to buy into his differences being due to his years of being sick and not having the opportunity to learn the same social things as his peers. That his ADHD would get under control and he would become more attentive like his peers. That he would run and play naturally with his friends . He’s ten years old now, and the differences are not going away. Things are still hard for him. Although he will always tell you he is awesome, he is different from his peers. Seeing Zack at camp with other kids who are not typical just reinforced the fact that he really belonged there. It was a perfect fit. He loved it and had so much fun. I am so glad that we were able to see this in a place that made him so happy.
Medically, Zack is the same. He is prolapsing several times a month. Recently he had a particularly painful one that kept him on the sofa for three hours. Though it was super painful for him, it was a good reminder of how far we have come. Currently, Zack only prolapses a few times a month (any prolapsing stinks if it is happening to you). There was a time when he prolapsed daily and was in constant pain. While our preference would be that he not prolapse at all, 2-4 times a month is definitely better. His stoma continues to be very swollen a lot of the time which also hurts. In addition, he continues to have periods of obstructed output. This past week he went seven and a half hours without a drop out. He was crabby and irritable, but once his output started back up he was back to his happy self. His output continues to be high. Do I sound like a broken record? I feel like one. BUT no hospitalizations, so we are grateful.
I have so much more I could write about, but for some reason this post has taken forever to write. I think I’ll save the rest for another day. Until then, enjoy this last picture of Zack lovin’ camp!
Hug your babies!
And Carie S. …….you are welcome…..