Because my life is deliciously full...sometimes I'm a little slow to update my blog. Sorry; not sorry. This is the first summer since 2014 that our calendar has not been burdened with oppressive medical appointments and I'm learning to enjoy a bit of freedom away from hospitals and cancer centers.
Anyway, last month, my sons both went to
sleep-away camp for the first time ever, and we all survived.
We dropped them off on mid-morning on Monday, and didn't see them until mid-day on Wednesday. It was a little slice of heaven for about 48 hours for
my husband and I.
The person who was to be in charge of our child who has
special needs was a Rock Star. In working with the camp co-director in preparing for this major life-altering event, I asked her if I should type up some information that would help everyone, you know, like you do...even if it's before leaving your child with a brand new kid sitter before going out to dinner for 3 hours. She felt that would be a good idea.
I managed to get most everything onto one page using an 11 point font, with 0.75" margins. Because he's a handful. Not in a bad way. But, for reals, he can be challenging to manage. He's kind like a Husky puppy that weighs 133 pounds and doesn't realize how big he is and that type of thing needs a little...support. He's not a bull in a China shop. He's definitely gotten better and more aware of his surroundings because his
vestibular sense has improved.
Annnnyyyyywaaaaaayyyy.....
So we met the Rock Star Counselor and got checked in and made our way down to the cabin where the boys were going to be staying. They were bunk mates, with our younger son on the top bunk,
just like at home. They were in with the littles: the kids who were 7 and 8 and it was their first time at camp, too.
Fantastic!
I handed the Rock Star Counselor the one-page summary of my kid, including what his typical seizure looks like and how long they last, directions on what to do if he seized longer than 5 seconds, if he sees my son have more than 25-30 seizures in a 24 period (I know it sounds like a lot...but this is a kiddo who used to seize 250 or more in a 24 hour period...so 10% of that is reasonable for me). I also included his medication list, correct dosage amount and time/frequency of dose. Phone numbers for me, my husband and our family physician's office. And to make sure that if he has a seizure that lasts more than 30 seconds, just call 911 and then get his brother because he knows what's within the range of normal and will be able to help answer questions and he'd provide support by just being there.
I started helping the boys unpack and the Rock Star Counselor looked up at me and said, "What do I do to de-escalate him?"
Fuck. I forgot to include that. You are human and make mistakes and can't think of everything, Rachel.
Shit! He speaks
DD! Of course he does because he has a Bachelor's in Special Education and he worked in the classroom but left because
paperwork (not judging; I totally get it! SpEd Teachers do more paperwork than providing direct services to students!) and now he works with adults who have
I/DD and helps them integrate into the community and I love him and he is a ROCK STAR!!!
"Well, he's developmentally about five, so distraction is good," I said. "Singing Beatles songs is also a go-to for him."
"Got it!" said the Rock Star Counselor.
And I knew that, by the time we'd pick the boys up in 48 hours, the Rock Star Counselor was going to have a firm understanding of my kid.
We left the cabin, headed down to
the lake, and looked at the dock. We chatted about the importance of staying on the trails but not running; nobody want's to slip and have gravel picked out of his knees. The Rock Star Counselor asked the boys if they were going to do the Polar Bear Swim in the morning. They had no clue what that even was, so he kindly explained. The boys were both a bit excited and a bit apprehensive at the idea of jumping into a glacier-fed lake first thing in the morning.
We headed back up to the lodge, where the campers were getting ready to eat lunch. The menu consisted of corn dogs, with a side of mac and cheese, which resulted in an overjoyed older boy, and a younger boy who may have gagged...or even vomited in his mouth a little.
My husband and I said our goodbyes, gave and received many hugs and kisses from our sons, and left, enjoying the deafening silence in the car. We immediately went to our favorite Mexican Restaurant for lunch. No, we did not drink margaritas...not my drug of choice, duh. Also, post chemo, one drink of alcohol creates the feeling of a major hangover...so, no.
Anyway...so we got to be grown-ups for 48 hours and it was fucking delicious! On Tuesday morning we got up early and my husband drove us down to Tacoma, while I worked on attaching a binding to a quilt by hand (because my quilter friends taught me the right way!). We chose Tacoma over Seattle because we didn't' want to deal with the ferry and Seattle traffic and parking. We went to
Half-Price Books, because we're book whores. And we went to the
Apple Store, because our iPhones needed to have the batteries replaced (yes, we had an appointment. We're not the type of people to spontaneously go to a major city and expect to be seen without an appointment. Because we're on a time crunch, here, people!). And we ate lunch at
The Cheesecake Factory, but we didn't' take any pictures of our food because our phones were not with us...which was actually delightful! Oh! And
See's Candy gave us free samples...so then we felt obligated and we bought a bunch of chocolate. Duh. But it was gone before we made it back to the Peninsula. I'm not buying chocolate for the boys. Whatever, they want for nothing. And finally, after picking up our phones, we went to my favorite store,
Lover's Package...because sex is a hobby we can do together and we're at the Boss Level. No, I'm not providing details. And, no we're not streaming a live demo on YouTube. Or on
Fuckbook. It's a thing. You're welcome.
So, we picked the boys up on Wednesday, just before lunch and they were on goddamn fire. Well, the older one was exhausted, and the younger one was pissed off at whatever, because he's 9 and he and his brother were having what the Rock Star Counselor described as "brother stuff" and we all know what that means...so whatever, bitches, it's time to go.
It took us a full hour to leave the camp...because we, as parents, needed to check in with the Rock Star Counselor and the Co-Director, and, good problem to have: the boys didn't want to leave. They used the bathroom about 12 more times, each got a slice of pizza from the Master Chef, gave high fives to their counselors, with promises to see each other next summer. WIN!
We were told they got a little bit homesick on Tuesday evening, but that that's pretty normal. They did do the Polar Bear swim on BOTH mornings, and immediately warmed up with cups of hot cocoa, and then a
Klondike Bar...like ya do.... They spent the first night in the lodge, watching a movie with all the boys and staying up about three hours past their usual bedtime. We knew, based upon our conversations with the Co-Director in our planning, that this would happen...and we anticipated fall out...but it wasn't as bad as we'd thought it would be.
They each looked as though they didn't sleep, but also looked as though they had aged just a smidge. The older one said he took all of his meds, and I trust that he did. He said he didn't have a lot of seizures, and I trust that he didn't He said his favorite part of camp was going in the canoe with his brother and the Rock Star Counselor. The younger one said that he learned that when he has to go, he really can poop anywhere and use scratchy toilet paper. He said his favorite part of camp was hanging out with his BFF, the daughter of the Co-Director, and that next year, he wants to be there for the entire three weeks that she's there. They also said their favorite part was swimming in the lake and eating all the food and sleeping in the cabins and that they absolutely, positively have to go again for a week next summer and that is something my husband and I completely support.
The days following camp were not as bad as we had anticipated. They were tired, and it took them a few days to recover. But we didn't see as many seizures as we thought we would; and my hope that he'll eventually grow out of his epilepsy was renewed...because you just don't give up hope on something like that. Or I don't, anyway....
They came away with an incredible experience, and grew as individuals and in their own relationship as brothers. We are all very thankful for the opportunity, experiences, and support that was provided by the Co-Directors and the counselors and are very much looking forward to summer 2019.
