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Saturday, March 14, 2020

It is tough being 17

Brendan wants a job. This is very difficult because he really doesn't seem to understand that he is not capable of holding a job.

He has a job coach at school which has been a really awesome experience. He has taken many tours and has 'worked' many different jobs. He obviously loves it and always enjoys going out and about and experiencing different things. He has worked with the police station, at a local bakery, CVS and is currently going to a movie theater. He has toured amazon, an auto parts store and some other places. He needs a huge amount of assistance physically and socially. It has made me realize how incapable he really is. To me Brendan is Brendan. I now he is different, I know he needs a lot of assistance. I know he can't focus. I know he has a lot of trouble accomplishing tasks. I know he gets distracted. I know he rather talk to people than actually get anything accomplished and while I know all of this there is a tiny part of my brain that thinks there must be something out there for him! But then I stop in to spy on him at the bakery and realize he is not able to actually do anything. His job coach wheels him around and he can't even pour coffee. I am sadly reminded that he is not capable of working.

His left hand and arm is the least affected. It is really hard to do things with one hand, never mind also trying to control a wheelchair especially lacking any sort of drive and determination. To live a life with his brain is completely incomprehensible to me. He is actually very smart and he remembers everything but he has a lot of trouble saying what his brain is thinking. He hates to answer questions and actually refuses to. He has come a long but is no where near a typical 17 year old. Yet he thinks he can just go out and get a job. He has much higher expectations than what is seemingly possible.

He came home with an application last week and was obsessed with filling it out. I read the application and it is for truck drivers delivering ice. I tried to explain that there is no way he can do this job. They would like you to have a CDL license. Brendan can't even get a regular license. He wouldn't listen to me at all. He had one thing on his mind and that was to fill out this application. We decided to let him if he could do it himself. I text his job coach and he told me that Brendan had insisted printing out the application even though he told him the job wasn't really good for him. We explained to Brendan how to fill it out and where to write certain things. Brendan can not write, never mind read. I am fairly certain his 5 year old sister could have filled it out better. You couldn't read anything he wrote but at this point I had no choice but to let him accomplish this task so we could all move on for the night. He folded it and put it into his pouch that he takes to school everyday. I told him to give it to his job coach. I text his job coach to let him know the situation. Brendan told me the application was turned in and they would call him.

Brendan thinks that he has the job. He is waiting for them to call him back. I have explained many times that isn't how it works. They will look at all the applications and choose the best qualified person for the job. I don't think he understands at all. I have to get point blank at times and just say "Brendan, you can not lift ice, you can not drive a truck, you can not work this job" but for some reason he honestly thinks he can. I explain that his 15 year old sister has applied to multiple jobs and hasn't received a call back. That helped a little.

Last month he asked if the orthopedic appliance shop was hiring for the Summer. He went and asked for an application. I knew they wouldn't hire him so I let him do what he wanted to do. He gave them his cell phone number just in case they needed anyone. His orthotist gave him a tour and he was happy as can be.

I don't know how I will continue to deal with this over the years. He really wants a job but there isn't anything suitable out there for him. He has a long life ahead of him so I really hope we can find something that he can do.
Any advice would be greatly appreciated.

Wednesday, March 11, 2020

4 minute Work out Challenge

I already feel a difference and it hasn't even been 2 weeks. I am not going to lie. I am a little excited. I really wanted to tone my stomach and this is so easy to do. Anyone can fit in 4 minutes a day. I seriously can't believe it is working. I am already powering through push ups and doing more than when I started. I had upper body strength to begin with lifting Bren but my abs needed some intervention after having 4 kids!
Try it!!
Look up Bright Side 4 minute Work Out

Sunday, March 1, 2020

To YouTube or not to YouTube

My husband thinks I should document my life on YouTube. It can't be super fancy because I seriously do not have the time. He thinks I have a lot to say and have a lot of experience raising a child with cerebral palsy.

At first I thought he was crazy but then realized that we have been through a lot. I constantly comment on Facebook groups and connect with a lot of people. I have researched a ton of things and Brendan has been through many procedures, surgeries, therapies and life experiences. And we have done it all together.

When I first found out he had cerebral palsy all I could do was search the internet and read about everything I could find. I had no idea what life had in store for us. I needed to know everything. I still remember scouring baby center on my lunch break at work. I could barely function those first few months. I couldn't focus on anything except for the fact that my baby boy was going to be different. That life as I knew it was changed in an instant.

Back then Facebook did not exist. There were no support groups, no mom friends we could turn to. I was alone. I had no support. I didn't know a single person that had cerebral palsy never mind another child with cerebral palsy. It was so foreign to me. I became obsessed. I actually found a bunch of moms on babycenter that I still talk to today! 17 years later. I loved that people would share their stories and ups and downs and I have never stopped reading and researching and sharing ever since. I know I can help other moms feel better in those early days. It is so important to not feel alone. To know it will get easier. To know you are doing the best you can.

I have a voice and I should use it. I love to connect with others that experience the same thing. It helps knowing you aren't alone. Cerebral Palsy is rapidly increasing which is very sad. It effects the rest of your life and everyone around you. My life has never been the same the moment Brendan was born. I was barely 23 years old and I had to grow up real fast.

I think Brendan and I have both come a long way in life and we have done it together. We are both still learning and growing and life has turned out okay. If I hadn't done everything I have done over the last 17 years he would not be where he is today. I will probably never stop. I do it all for him. I vowed to myself that I would give him the best life he could have and I don't think I have failed.

So we will see if I actually follow through as I seriously don't feel like I have a moment to spare.

Sunday, February 23, 2020

Night to Shine

Brendan has recently started going to dances again and attended his very first Night to Shine. He will have many Proms between this year and next year so we went ahead and purchased him his very own Tuxedo. We have different shirts and bow ties to switch it up for each dance. We lucked out and grabbed them all on clearance. After that entire process we are very happy that we decided to purchase instead of rent one each time. It is not easy to get it all on him and measure for alternations. In the end we save money as well since they are a lot more to rent than I had anticipated.

Brendan went through a period of not wanting to attend any dances. I found this odd since he used to love going. I didn't force him to go and was literally just accepting the fact that my son would not be attending Prom. However, this year he surprised me and asked to attend Homecoming. I have been wanting him to attend Night to Shine for years but since he wasn't into dances I never asked if he wanted to go. I am so glad he wanted to, he had an amazing time. His high school is now adding a Unified Prom this year so he will attend 3 just this year! Night to Shine was started by Tim Tebow in 2014 and provides an incredible experience for people with special needs around the country.

We lucked out and his school bus driver is simply amazing. She loves Brendan and has been a part of our lives for years and volunteered to be his buddy at the dance. We decided to surprise him and was beyond happy when he saw her.

His face seeing her:

We got to drop him off and go on a date! I knew he was in good hands so I had zero anxiety leaving him. He had an amazing time and will continue to attend. I literally cried when we came back to pick him up. Watching him and everyone so happy dancing the night away without a care in the world, without any judging them, without anyone looking at them weird or off in their own clicks. The DJ was ending the night and everyone started shouting "one more song, one more song" and my heart melted. I am so glad my son chose to experience an amazing event. I hope he continues to do so because I want him to enjoy his life no matter how hard it can be.

Derek got him out of his chair to dance with his buddy:

My teary eyes because apparently I will be emotional for life:

Friday, February 21, 2020

Cardiology, Orthotics and SDR Anniversary OH MY!

We have had a busy month as always. Yesterday marked 5 years since SDR! This week Brendan had his cardiology appointment to check on his enlarged aorta and then he was casted for new leg braces as well as a back brace for his scoliosis. We also finally picked up his new glasses because I broke his one week old pair the very first day we had his power wheel chair in the house. OOPS

I can't even believe it has been 5 years. So many memories come flooding into my brain. It was far from easy and I had my 6 week old baby to care for but we did it! When I think about everything that we have done since it seems a life time away but in other aspects it feels like yesterday. Time is weird like that.

Recovering from SDR 5 years ago today:

Brendan had to have his heart checked again. I was worried this time but not entirely sure why. Maybe because we just got horrendous news regarding his scoliosis. Maybe it is how I prepare myself in case the results are not what I want to hear. Apparently it is my coping mechanism so I can get through that very moment the doctor is spewing out information that I don't want to hear regarding my child. So I was anxious for a few days prior, however, there was no need because we got amazing results. His heart is functioning beautifully. We no longer need to even think about his device that was placed in his heart at age 5 to close 3 (of course not 1 but 3) holes in his heart. It is healed and not leaking and working perfectly. The last few years we have been watching an enlarged Aorta. The doctor had kept this lovely information to himself for years which thinking back I am completely okay with! Although when he told me I was knocked down like a ton of bricks. I didn't see it coming. We already had dealt with some leaking issues around his device and finally that appointment had been good news. No leaks were seen and it was healing completely. I wasn't prepared for a different type of heart defect especially one involving his aorta. Seriously kid?! This one hit me hard because my father had his aortic valve replaced and I figured it had to be genetic or something and visions of open heart surgery danced in my head. Thankfully as the years have gone on his enlarged aorta doesn't seem to be a problem. His just happens to not fit into the 'normal' range which doesn't surprise me because we are talking about Brendan here. Nothing has been normal since the day he was born. Once he is an adult the size of his aortic root won't even be considered enlarged which is less than a year away so we can all breathe again. He doesn't even have to go back for 3 years! This is the longest we have been able to avoid the cardiologist. We are both very happy. He really doesn't enjoy this appointment but rocked it like never before.

Very happy to be leaving that appointment:

At least he got to go see one of his favorite people after his most hated appointment, Katie. Katie is his orthotist. She makes his leg braces and whatever else his body needs. She has been working with him for 5 years now after his previous orthotist suddenly died after having an aneurysm. Brendan got to talk her ear off and get casted and measured for his new back brace. He enjoyed every second. She even gave him a tour of their brace shop and he gave the secretary's his phone number just in case they were hiring for the Summer! They have known him since he was a few years old and love him. Brendan has that way with people.

Happy at this appointment:

So we have had a busy few months but we got a lot checked off of our list. We received some bad news and some good news and that is how life works.

I think we got all of his appointments checked off for a while. Next week I get to endure a multiple hour allergy appointment with my 5 year old so it actually never ends for me!