Channel 12 news

Sunday, October 27, 2019

Life is too hectic....I forgot to post about Summer Camp

Wow I just realized that I forgot to post about a huge milestone this past Summer. Brendan went to Summer camp. Not just day camp. He went off and spent 12 nights at a camp multiple states away from us. We found a camp in NJ. We were both nervous but my husband was very excited for the much needed break.

We went on a road trip back in April during April vacation and we were able to tour the camp on the way home. We had kept it a secret the whole trip because once Brendan knows something he won't stop asking questions. I could not be stuck in an RV for 7 days answering questions that I didn't know, about a summer camp I had never seen. So we told him 30 minutes before we arrived and he was absolutely shocked. He took the news well and was excited to see the camp. He even asked some really appropriate questions. The most important question he asked was if he could bring his cell phone! The answer was no, no cell phones are allowed. No computers, no phones, no communication accept for me emailing or calling to ask about him. I couldn't even speak to him. That was a little intimidating, even for me.

I really thought he would not want to go but instead he was very excited. He would attend in August so we had a few months to prepare especially mentally. It was the first time Brendan would ever be away from me for that long. I realized that Brendan has never ever slept away from me or his father for more than one night and now he was going to sleep at a camp without knowing anyone for 12 nights. This is a huge! I think the longest he has been away from me was when he went to Disney with his father which I believe was 7 nights at most. 12 nights felt like an eternity.

His younger sister and I drove to NJ to bring him and we made a weekend trip out of it. He was fine until the day it was time to be dropped off. He was beyond nervous. Drop off wasn't until later afternoon so his anxiety spiked. We took him out to lunch and to the mall to get his mind off of it but that didn't help at all. He was consumed by his nerves. He didn't even eat his french fries at lunch but he did manage to get his steak down! He even broke down crying at lunch. I didn't know what to do or say. Makayla and I felt so bad for him. We took him to pick out new shoes for school and then left to go get ready for drop off.

I told him girls would be at the camp and he smiled about that!

Super nervous leaving the hotel!

Once we arrived he was amazing! He didn't cry at all. Drop off was very different than I had expected. 3 people approached the van and took out all of his luggage and helped get his power travel chair out. It was top notch treatment. They had an outdoor area where we checked in and they told him what cabin to go to. It was all so fast. They would have whisked him away right then and there...5 minutes after we arrived. I asked if I go to the cabin with him and they said I could so I asked Brendan if that is what he wanted. He agreed so off we went. He started talking to one of the counselors that was unpacking on a bed across the room and he warmed right up. He never cried. He said he was ready. So I just left him there in his wheelchair with all his luggage. It was so odd. I had to leave my child they knew nothing about besides some detailed forms I had filled out. I have never done anything like this but I think I was having a harder time than him. He made it so much easier being so brave. I was shocked because after his morning anxiety I thought he was going to have a major meltdown. Nope, he was awesome! As always.

Makayla and I felt so weird just leaving him like that but off we went to enjoy some time together. Of course a major storm rolled in the next day and the camp seriously lost power for days. Not only power but their phone lines. I tried all day getting in touch to see how he was doing and couldn't get through. On our 6 hour drive home I realized I could email them so we emailed back and forth for check ins. He was homesick the first few days but only during meal times, probably because we always eat together for breakfast and dinner. I was told after a few days he was loving it and embracing camp life. I wasn't able to talk to him at all. I waited for a post card but never received one. I couldn't wait to hear how it was.

We figured Brendan would say he hated it and was never going back because that is what he does even if he actually enjoyed something. We were prepared for him to say this over the next few months but instead he actually acted like he liked it. He did say the beds were uncomfortable the food was bad which sounds 100% like camp to me! I told him we would get him an egg crate for the bed next year (this was my test question to see how he would react) and he said okay. WHAT?! He didn't say No, I am not going back but instead agreed. So he is going again next year and he will probably not be as homesick. I am so happy he enjoyed it. 12 nights and no electronics is so good for him. I am going to try and get his friend Jack to go with him next year.

They didn't send any pictures or any information on how it went and I didn't get much out of Brendan but the bottom line is he enjoyed himself. He survived 12 days away from us. I should have less anxiety next year and hopefully a storm doesn't take out their power and phone lines on day 1! So amazing that camps exist for disabled children like this. It was an experience I never thought either of us would have yet we did.

Wednesday, October 23, 2019

Brendan is growing up way too fast.

Brendan turns 17 next month. I am not entirely sure how this is even possible. 17 scares me. 17 means he is almost an adult. Most of you are probably excited as your children reach adulthood but I am terrified. Everything changes. He exits high school. I have to become his guardian because he is clearly not capable of making serious decisions on his own. He begins day programs and I have to really hope we find something that works for him and that he enjoys. These things have been running through my mind constantly and I am stressing out. I think once we start the process on all of these things I will feel better. I am just waiting for it and that gives me anxiety. So many unknowns.

Although half the time I am stressed out the other half I am beyond thankful. Brendan has come so far in life. He seriously handles this life better than I could ever have handled it. He has had 13 surgeries! I have only ever had my wisdom teeth out. I can't imagine being cut open. Yet he goes in so strong and comes out even stronger. He is stuck in a wheelchair yet he is happy. He is becoming more and more independent. He is constantly maturing. Throughout his life my husband and I often have conversations revolving around Brendan. By often I mean daily! Years ago we wondered if we would ever be able to carry on a real conversation with him and now we do! Years ago we wondered if he would ever mature and not act like an immature kid and he does! Not always but he often blows me away with what he says and asks. I never ever thought he would be able to use the bathroom on his own and yet he does. I never thought he would be able to get his covers off and sit up and wait for us to come dress him in the morning but he does every single day. I never ever thought he could get off his bus and enter the house 100% independently and he currently is. He is simply amazing!

I feel like we, well lets be serious.... me, have made great decisions over the years. I have had to make many difficult decisions. I have had to say yes to way too many surgeries. But overall I truly feel that they have all been the right decision. I honestly do not think he would be where he is today without going through the many difficult times. When I look back I am flabbergasted on how amazing he is going under the knife. He has been casted and braced and stuck in bed for days and whenever we think back we are like, WOW, he handled that amazingly well. I keep telling myself this because I am trying to prepare myself for spinal surgery. His scoliosis doesn't look good. His back is deforming more and more as he grows. I hate this. I hate that I couldn't prevent it. I hate that I blame myself for it. I hate that this could very well be surgery #14. I cry instantly thinking about it. My husband normally showers and dresses him and didn't want to bring it up to me the other morning but he did. I instantly started bawling my eyes out because I already knew. I gave him a shower days before. I notice everything. I know it is getting worse and I am avoiding it but that won't do anyone any good. It is time for x rays and it is time to hear the news I never ever wanted to hear. In all honesty this surgery scares the sh*t out of me. I have started to read stories about it because I know it is coming. I am trying to prepare myself.

This CP life is not easy. Not only for him but for everyone that loves him. I never knew I would live this life full of heartache and stress. Almost 17 years in, now that is crazy! I am hear for the long haul. I will do what is best for him, at least I try. I often wonder if I should have corrected his left hip and if not doing so caused his scoliosis?! I want to think I made the best decisions but then I question myself.

So hear is to 17! Maybe I am wrong and he doesn't need surgery. Honestly I am not usually wrong, my mom radar is on par.

Now to leave this post on a good note. Brendan decided to attend the Homecoming dance this year. He hasn't wanted to go to dances in years now and randomly he told me he wanted to go (days before the dance of course) and he looked awesome! His pants look so much better in person. My husband wheeled him over to me in Burlington Coat Factory wearing them and I was like OMG I love them! Girls danced with him and Senior boys took him out on the dance floor. I really think he will attend his Prom and I was just convincing myself that it is okay if he doesn't experience it if he doesn't want to. I am one happy mama.