So, I'm sorry it has taken a little while for me to get this together. I got home from camp on Friday afternoon and we immediately packed and left for Tulsa, OK for a family reunion. We got home Sunday evening and then Ryan and I went to the ball game last night. I have so much to write about camp that I don't even know where to begin.
This was a week that was just for hearts – special hearts… (hearts of all shapes and sizes, hearts that have been cut open more than once, hearts that are new to the body they are now in) … all beautiful hearts.
Saturday- I arrived at camp in the afternoon for counselor training. All of the equipment and supplies had been delivered and we had the privelege of setting it all up in the various cabins and buildings. The rest of the day was spent getting to know the other volunteers/staff and learning the ins and outs of Camp Rhythm. After training, we ate dinner, watched a movie, and swam. Then, to bed because we had a very busy and tiring day on Sunday.
Sunday- We woke up, ate breakfast, read the medical history of each of our campers, decorated our campers, and then they started arriving. I was the main counselor in our cabin and I had 2 junior counselors who were lots of help. We had the youngest girls so many of them had never been to camp before and some had never been away from home, EVER. As they walked up to check in, you could see the worry on the parent's faces. I could totally relate to the Mama's. I can't imagine leaving Maggie there when she is 8 yrs. old. As heart moms, we spend every moment watching our kids. Are they breathing normally? Is their color okay? How is their energy level? Are they eating enough? So, leaving our babies in someone else's hands (as capable as they may be) is VERY hard. While walking the families to our cabin to get settled, I was able to share that I was a heart Mom as well and this seemed to give them some comfort. They weren't leaving their girls with a teenager/college student (this is what most of the counselors were), they were leaving them with another heart mama. And this is what I was all week – Mom to 7 girls! So, the rest of Sunday was spent getting the campers settled in. We had a scavenger hunt, dinner, and lots of silly games that night. There was some homesickness the first night, but we got past it and they all slept pretty well.
Monday- we woke up, ate breakfast, and then the day was filled with lots of fun activities: craft, swimming, games, rest time, more swimming, dinner, and then MED MANIA. This was one of my favorite night activities. Lots of the SLCH staff comes out for this. The heart station came and brought their ultrasound machines. The kids got to do echocardiograms on each other and the techs. They got to do EKG's on the counselors. Their was pill (Skittle) counting, cookie decorating with syringes, and the cath lab brought some of the supplies so the kids could see what goes on during a cardiac cath. It was so great for the kids to be able to have fun with all of the stuff that is usually so scary.
Tuesday- woke up, ate breakfast, more fun activities: craft, swimming, archery, rest time, more swimming, dinner, and then Movie night. The movie was supposed to be outside, but it rained. Ryan brought the kids up so I got to see them for awhile. Becca, the camp coordinator, was so awesome. She let me have the whole evening off to be with my kiddos. I was glad that Trent got to see where "camp" was and what I had been doing. As you know, Trent will never be able to go to Camp Rhythm. It is only for kids who have had heart surgery. However, I hope that Camp Rhythm will always be special to him, and someday he may be able to volunteer. Some of my campers started getting homesick Tuesday night, but again, I was able to talk them through it.
Wednesday- same schedule as monday and tuesday except we also went fishing and a reptile guy came in the afternoon. He brought, lizards, tarantulas, scorpions, an anaconda, and a python. If you don't know, I HATE snakes. I stayed out of the room for most of it, but the kids LOVED it. They were so proud of themselves for petting and holding them. YUCK! Wednesday night was a Hollywood Dance Party. That afternoon, a lady came to do the girl's hair. The kids went all out. They dressed up in pretty dresses, and some of the guys wore suits and ties. The star of the week (I'll tell you more about her later) dressed up as Hannah Montana. They hired a DJ for the night and the kids danced the night away. It was so great to see them all having so much fun. My girls are very homesick by now and I needed the help of Becca to get them tucked in. we actually ended up having a slumber party in the floor of our cabin. One of the girls was sick and I needed to keep an eye on her.
Thursday- the last full day of camp. Swimming, fishing, archery, crafts, and practicing for the night's talent show. We did a very simple number. It was a clap/step deal. The girls did great. Some of the other cabins danced to Hannah Montana songs, danced to Soldier Boy, and their were even some air guitars. Thursday, we had a special camper for the afternoon. This little girl had just received her new heart a week before and she was able to spend the afternoon with her cabin mates from last year. She even got to participate in the talent show. This is what Camp Rhythm is about. This little girl came straight from SLCH to camp. You should have seen the smile on her face during their song. She had to go back to the hospital that night, but she was able to have a day that she will never forget. The star of the week (more to come later) did a Hannah Montana number that was hilarious. She ran back and forth in the audience, touching our hands and giving us hugs. She was quite the performer. The night ended with my sick girl having to go home. I was so sad she couldn't spend the last night with us. However, she was so brave. We packed our things, cleaned our cabin and went to bed.
Friday- most of my girls woke up ready to see their parents. They got ready very quickly, ate breakfast, and couldn't wait for their families to come. At 10:00 their parents started arriving and I'm pretty sure the mamas missed the girls more than they missed their mamas. For some of my girls, this was hard to believe. At 11:00 we watched a slide show that my Mom worked on all week. It captured all of the special moments of the week and everyone loved it. After this the week was over. However, I will never forget all of the amazing moments of my first week at Camp Rhythm. I learned so much.
First of all, I knew that Maggie's Cardiologist was wonderful, but I didn't know how wonderful. Dr. Sharkey is AMAZING! She was there all week and it was so great to see her interacting with the kids. She loves each and every one of them. I can't begin to tell you how good she is with them. She thinks of everything and can make anything better: hearts, scrapes, ears, homesickness, and hurt feelings. The rest of the staff is wonderful too. They love these kids so much. There were so many nurses, fellows, dr.'s, social workers, and child life specialists who came out to volunteer and show how much they love these kiddos. The camp coordinator, Becca, is pretty darn great! She is a Child Life Specialist and is so good at her job. She is who I called when I had a home sick camper. I learned lots from her.
Second, Maggie's scar will always be very noticeable. People always try to tell me that Maggie's scar will fade and will hardly be noticeable. Many of the campers had only had one surgery. People, their scars have not faded. They are still noticeable. So, please stop telling me that "someday we probably won't see it anymore". It's okay that it's there. In fact, I spent so much time with kids with zippers that it was strange to see everyone at the hotel this weekend without them. I talked to my jr. counselor who is has had one heart surgery as a newborn. Sure, her scar has faded some, but it is still quite noticeable. People constantly ask her about it and it drives her crazy. She hates answering questions about it. She doesn't wear dresses very often because of it. So, this is all part of the deal, but it will always be a part of Maggie Jane and she won't outgrow it.
Third, there are two character traits that I hope and pray Maggie will have: Courage and Confidence. One of my campers, started getting shaky Tuesday night. She didn't feel sick any other way, but she was pretty shaky. We all thought it would go away, but it didn't. M was so brave. There were no tears. She would come up to me and give me an update on how she was doing, tell me if she was more or less shaky, or if she felt sick in any other way. The dr.'s were a little concerned because they thought it could be one of her meds. However, thru the whole time she was a rock. Her Dad came up to check on her on Wednesday and he decided that she was okay to stay. However, Thursday night she puked after the talent show and she had to go home. Still, no tears. She didn't want to go home but she just smiled and said "okay". M has been thru hell. She had leukemia a couple years ago and the chemo destroyed her heart. She got a heart transplant last year right before it was almost too late. Her parents said that she has always been this brave. I admire this little girl so much. I don't know where her courage comes from. It is amazing. I am 3 x's her age, and I have a fraction of the courage as M. Earlier I mentioned the star of the week. I will call her K. K is 11 1/2 but is maybe the size of a 5 yr. old. However, she has the spirit of a champion. Her personality is indescribable. She bubbles over with joy and love. She has more confidence than I could ever dream of having. As I watched her perform her Hannah Montana dance, I got tears in my eyes and it wasn't because I like H.M. :-) I looked at her and wondered if Maggie would ever have that much confidence. On the last day of camp, I told her that I hope and pray that Maggie will some day have that much confidence. She just smiled and gave me a hug. God, please give Maggie Jane the courage of M and the confidence of K.
Last, we are not alone. So often, it feels so lonely on this journey. However, Maggie is one of many heart kids. Some have it worse than her and some have it much better. I met some other heart parents this week who were volunteering as well. I am excited to get to know them better. Added bonus, their kids are almost exactly Maggie's age. As I sat in the Rec Hall for the slide show, I looked around. The room was full of other families who are just like us. Their kiddos heart problems are all different but their thoughts are the same: worried, scared, confused, proud, and amazed.