Saturday, July 4, 2009

Camp Barnabas!!!

Wow, Wow, wow, wow, wow.
I have rarely been this impressed, and this touched by an organization. We were thrilled to finally pick Monte up on Wednesday morning at Camp Barnabas. (We dropped him off Thursday at 4, so it was 6ish days). We hopped in the car to drive up there...and had a dead battery. Several attempts later, we hurridly parked, then raced to his cabin to be the first parent to get to hold him. We stopped abruptly in front of his cabin...I didn't see him! Then I noticed the gaggle of girl counselers gathered around a bright orange wheelchair-Monte! He seems to have quite a way with the ladies, I can't wait to see him in the next life! They were all gathered around singing, stroking his arms/face/legs, flirting with him. So cute! His counseler was still amazing, so excited for Monte, telling us all about his week, continually being attentive to his needs even though we were there...wow. Ok, the highlights:
Monte was so happy! He was thrilled to see us, but kept looking around for Brandon (counseler) also. It was obvious that they'd really developed a bond. He did wrap his arm around me and give me a dozen kisses as soon as I picked him up, that was special. Brandon's mom (cabin Mom) said that the first 2 nights he got a little sad and cried, so she and Brandon cuddled him, telling him loudly in his good ear, "mommy and daddy love you, they're coming back to pick you up soon, they want you to have a fun and special experience here at camp for a little while," ect. It was exactly what I would've wanted them to say, and meant a lot that they did that. After those nights, he did great, and really soaked it all it.
Monte went swimming in the awesomely huge pool everyday, went down the water slides, went horseback riding (liked it, hated the helmet), potted a flower, gardened, did arts and crafts, cooking, swinging, fishing, canoeing, dancing, ect. They had a party with a theme everynight, and we were able to come up with some really cute costumes before we left, so he fit right in. He was able to walk in his walker throughout the camp (it's almost all paved). They kept commenting on his appetite, he loved the food. One morning even had 4 huge pancakes! I did warn them not to let go of the plate-but they figured it out the first day when he tossed it acrossed the room. He did great with using a spoon, and they even worked on using a fork! (he did great, and that's not something I've spent any time on, oops).
At the closing day ceremony, the musicians played the camp songs, and Monte laughed and danced harder then I'd ever seen him. I cried and cried, but it was a good thing. It was all so overwhelmingly touching.
He was so happy the entire time we were there! Everyone knew him, not just his name, but all about him. They talked to him like a person, and had lots of fun experiences to share with us about him.
Final thoughts: Brandon asked that we bring him back every year, he plans to be his counseler year after year...I told him that I wouldn't have left Monte with just anyone, and I was thrilled that they were paired together. He very honestly and seriously told me, "Everyone here is amazing. The first couple days were really hard, and I wasn't sure I could do it all. But my other cabin counselers and the other staffers really helped me with everything and made it so fun and easy, it was great. I was scared at first, (this about doing his g-tube night feeding pump) but now it's not a big deal at all. I want to come back every year, please keep doing this!" (sob). Then his mom pulled me aside and also thanked me for sending Monte. She said, "I see the change in my son, and I am awed. I know that he was really nervous when he first learned about Monte and all of his needs, and saw all the other "special kids" and pretty overwhelmed. But after this week, I know he no longer sees a "different" kid, but a really awesome, cool, fun kid...who just happens to be sitting in a chair." (sob)
I asked them both if I should send Monte back, if this camp was a good place for him, and if he did well with it, and got a resounding YES!
I am so thrilled, so overwhelmed, so grateful, so touched, and so pleased. He's a more confident, more loving, different kid today. I came home determined to send him back every year, to do all I can to funraise for the camp so more kids can come, to tell all my friends about it so they can send their kids, and to talk all of the teenagers/college kids I know into volunteering.
If you made it through this post and want to do any of that, let me know!

10 comments:

Cherie said...

Oh Claire that post made me cry like a baby! I'm so happy for Monte and for the wonderful impact that he continues to have on everyone's lives who has the pleasure of meeting him. This camp sounds absolutely wonderful and a place I would love! Thank you so much for sharing that experience :)

Heidi said...

YAY! I am thrilled for Monte and for you guys. What a fabulous experience. I continue to stand in awe of a loving, all-knowing, all powerful Heavenly Father who knows our needs and tends to them in miraculous ways. I am so happy that Monte was well to go and that he had such a fantastic time. Thanks for keeping us updated...it has been a pleasure to read your posts!

Higley's said...

Yay for Monte! I am so happy you sent him there, it sounds like he had a great time! How old was his counselor, Brandon?

Emilie and Branden said...

Hello...fellow mommy blogger here...I was perusing your posts and wondered if you have any advice for clustered tonic spasms. They're a rare type of seizure that our 2 year old has that we haven't been able to treat with medicine. They're totally resistant to anything we given him. He takes Topamax now but no improvement.

Looking for advice all over the world wide wed. Good luck with everything you're doing with your son. You are a trouper!!

claire said...

Emilie, hello there! Always nice to "meet" another mom of a special kid...
We saw the Neurologists at PCMC for years, watching in frustration as they continually increased his doses of medications as Monte's seizures continually increased in frequency and duration. The more they added meds and the more they increased doses, the more cognitive ability he lost. The last few months he was on phenobarbital, trileptal, topomax and tegretol, and still having breakthrough tonic clonic seizures. He also pretty much shut down cognitively, sleeping on and off throughout the day. We were thrilled to find an epileptologist as St. Louis Children's Hospital. She actually reads her own patients EEG's herself, and it amazing at treating with appropriate medications with minimal side effects. Her name is Dr. Bertrand if you'd like to look her up. She first saw him in the PICU after being life-flighted after a 1 1/2 hour tonic clonic. After reading his EEG she was disgusted with his medication list and emphatically told us that none of them were treating his seizures at all. In the 1 1/2 years she's weaned him off all of those, and onto a small dose of Keppra. He has also only had 3 breakthrough seizures, and all of those related to shunt malfunctions. (before he was having at least 2 tonic clonic's 15 min-1 hour long a month and a cluster of focal seizures monthly as well).
This all being said, we are thrilled with our new doctor. I know it would cost a plane ticket or really long drive...but I would have sacrificed so much more than that if I had known it was available. Anyway, that's my suggestion! Hope that helps, at least a little bit, maybe just knowing that there probably is a better treatment available. Oh, and Topomax didn't help him at all, just caused a lot of other problems.
Hang in there, it's a tough and heartbreaking problem to have!

onecent said...

what an amazing experience!!!!! I am so grateful he had such a great opportunity! I love the 10 minute hug photo!
*penny*

Di Regolo Family said...

Thanks for your post. Joe was invited to two camps this year and I denied each thinking that it would be to much for the staff. But maybe in next year. What was the camp called? I am sure it was in Missouri, but let me know. I am glad that things are doing better for Monte in Missouri. Love, Di Regolo family

Molly said...

Wow, your post also brought tears to my eyes. Monte was definitely sent to you guys for a reason. Do you remember how hard it was for you guys when he was first born? I do, but now look at him! He is such an awesome little guy and you guys are bringing out everything great in him. What a blessing! We miss you guys a ton!

claire said...

I'm so grateful to you for your comments, they brightened my day! Answers to questions: Brandon was 18, just graduated from High School.
Michelle, the camp is called Camp Barnabas. Look at the other blogs for stories about the camp, more details, and the u-tube videos on the camp.

Elissa said...

Holy cow maybe it's because I'm pregnant but I cried like a baby reading that! I'm so happy for Monte what an amazing opportunity for him. Let us know if there's anything we can do all the way out here in Utah!