Friday, July 5, 2013

Goodbye Mother…Goodbye Father…I am here…at Camp Wonder! Day 1 & 2

Yes goodbye mom and dad…hello to her fellow peers! Those were the words repeated to me not even an hour after settling into Camp Wonder the week of June 23rd, 2013. The camp is situated in the breathtaking city of Livermore, CA. This opportunity has been presented to us several times before but it wasn’t until this year that we felt Bianca was ready for a sleep away camp (with the parental units not even 10 minutes away in the outskirts of the city). It took several months of getting her comfortable with the idea. I managed to engage a young lady by the name of Ariana to speak with her about camp. I also recruited another EB mom’s son, Zach who we’ve known for many years to speak to Bee about the excitement that can only happen at Camp Wonder. These two were instrumental in getting her all psyched for the adventure!

While I do not have insight into everything she did while at camp I do have a few highlights put together between pictures and conversations. Of course this will be 100% from a parent’s perspective and a few details from Bianca to fill in the gaps.


Day 1


We arrived on a bright beautiful Sunday afternoon at Camp Arroyo which hosted Camp Wonder’s week of magic. Registration took some time since the many doctors, nurses and med students that were volunteering needed to interview us regarding medication, bandaging routine, feedings, etc… They were thorough in their questioning and each team was made up of 4 – 5 interviewers. No one missed a beat – if someone omitted a question another one followed up. Then up to the main nurses’ station to speak to what seems like the head nurse or medical personnel. We recapped what was covered and any concerns I had regarding dressings. Really I had none because I was planning on coming every day to do the bandage changes. Little did I know this was about to change. I was in awe that the team absorbed this information so well because I am in a constant battle trying to explain it to the common world. But these are people that have been around EB from a few days to several years. I usually do not encounter such a knowledgeable group under one roof during our regular lives.

Once we were registered we were able to take a stroll up to the cabin where Bianca would spend the next five nights. Her cabin’s name was Willow. She had a bottom bunk and she was sharing the room with five other campers. What an experience. She was a bit apprehensive at first but Sarah, one of her wonderful counselors, quickly put her at ease and she evolved into a young mature lady in front of my eyes. We made our way to the mess hall where I said goodbye and headed – hesitantly – to the hotel. We had to come back anyways because we left some items she needed for her stay. When I returned she looked at me and said “What are you doing here? We already did bandages!” Of course you can only imagine how surprised I was that she was okay for a few hours on her own already. I quickly told her I came for a quick minute to drop something off. Gave her a kiss good bye and left.
We received a phone call during the evening hours that Bianca got her first blister above her eye. I freaked out and thought FOR SURE she was going to ask me to pick her up. Instead she said she was fine it was during a game of Oreos on the forehead and she was snipped by mistake. If she wasn’t freaking out then there was no reason for me to freak out either. 


Day 2


Rob and I got up early in the morning to head back to the camp and see when we can do dressing changes. We are all new to this so I did not realize that there are time-slots provided for parents. When she saw me she once again said “What are you doing here? I’m playing and having fun mom. Can we do dressings later on?” I was rather taken aback by her statement. While Sarah, the counselor, was checking to see if there was a spot open at the med shed Richard (one of the camp director) came to speak with us. His words, as stern and solid as they were hit a core. He said that while no one will ever care for Bianca the way we do the medical shed is equipped to handle any and all severities of EB. The staff is on call 24 hours a day with dressing changes happening around the clock well into the night hours. It is all they do while at the camp. I had to step out, compose myself and walk back into the mess hall. I was a ball of nerves. Is this man really asking me to hand over 10+ years of caring for my child’s medical needs to a bunch of strangers? Albeit, caring, unselfish, knowledgeable and professional strangers but exactly that – S.T.R.A.N.G.E.R.S! So the next step is to see how Bianca would react to the news. I quickly gathered the name of the nurse that would be working in the shed – Nurse Pam. Bianca had already met her the night before. So when I approached her I asked her if she wanted to continue playing and then Nurse Pam would take care of doing dressing changes for her while at camp. Her response…a swift “sure no problem” – I felt all the air being sucked out of me when she said this so nonchalant. Bee 1 – Mom 0. Okay let me step this up a notch…I asked her if she would be okay with the nurse helping her with showering to do her dressings and she once again didn’t hesitate and said “why not…I shower on my own…I should be okay” another sucker punch to my soul! Bee 2 – Mom 0. So at this point I digressed. I had to come to terms that my little girl was a little bit more prepared than I was for this whole camping situation! 
Walking back to the car proved to be one of the most emotional experiences for me in a long time. I was leaving behind my little girl in the capable hands of medical professionals that understood EB. Someone else was going to be keeping an eye on her…someone else was going to be doing dressing changes…someone else was going to be helping here…someone else that’s not me! The last time I had to do such a thing was back in 2002. Looking back at the situation I believe the reason I took it so hard was because I’ve been here before – it just wasn’t during a positive time like Camp Wonder. Time to re-frame my mind!


Theme from Camp Wonder

  • Day 1 - Arrival - Hellos & Welcomes 
  • Day 2 - Floats & Parade plus they got to pick their prom dresses & accessories 







In her bunkbed 




Front door of her cabin 





Enjoying the music 





Fooling around w/Mr. Zach 






From crawling on the floor at their first PCC to Camp :) 





With her new friend - Charlotte 






Parade Day! 






Bianca and Camp Director Richard 





Hanging w/her new friend Briana 



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