It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Sunday, August 23, 2020
Me, Myself and I
Exactly that. Me, myself and I. What does that mean exactly? I get 4 days 100% to myself. I get to do whatever I want. I am camping, alone, which I wasn't 100% sure about but this mom needs it! My husband and I started this tradition last year. Since we have 5 kids and one is disabled it is impossible for anyone to take care of our kids for us. Let's be honest our parents are getting older and they can no longer care for Brendan. It is hard on our back nevermind theirs. So once a year we get a small break. This year Covid 19 almost ruined it. I enjoy going to a hotel but I had no choice. It was way too expensive and I had to stay in our state which didn't give many options for the price I wanted to pay. Since we have an RV, we should use it! We rented a site for 8 days so my husband and I just switch off and each get 4 days of total bliss!
Do I feel guitly? YUP! Should I? probably not. I am 100% a mom! I am 40 and have been a mother for nearly 18 years and since my oldest is disabled let me say my motherhood hasn't been easy. I am in it 100% and love having my huge family. I just totally need a break for my sanity once in a blue moon so I am so grateful that we thought of doing this and my husband is totally capable of handling the house, our business and 5 kids. I am pretty lucky!
Being 40 is tough. I am struggling mentally and have no idea why. I don't think it is my fault. I think it is totaly normal but it just sucks. I am probably burnt out as well. I go go go and go some more. We do everything for our kids. We have one driving and one turning 18, another turning 13 and still 2 young ones. At least the youngest finally sleeps through the night. I may be a lot worse if that wasn't the case.
Anyway I get 4 days to myself and here I am thinking about my family. I honestly just want to know what they are all doing right now. I love them beyond words. I also am super excited to relax and not have to answer to anyone. I get to do what I want, eat what I want, drink what I want and not have to cater to anyone. I don't have to cook for 7 people. I don't have to get up 1000 times to do who knows what. I can actually sit here and think without being interrupted because that is basically an impossible task in that house.
What am I going to do by myself for 4 days? Whatever I want. I had dinner, attempted to light a fire with damp wood, relaxed in a hammock, sat in a chair and am now peacefully sitting inside of my camper in complete silence. Well, I did play some music.....and without children requesting any of their songs.
I think all moms deserve some time. I know some get 'girls weekends' but I don't really have any friends. Sad but true. Raising a disabled child doesn't always allow for friends. I think a lot of people feel awkard around him even though I don't make it awkward at all and try 1000 percent to treat him like a typical child and act like it is no big deal that he is in a wheelchair. I try and make friends and they never last. I kind of realized why recently when I had a mom friend (our 8 year old kids are friends) over. I had to leave her so many times to go 'help' Brendan. We tried sitting and chatting and I constantly had to get up. For me it is normal life but obviously for 'them' it isn't. on a side note She is actually totally awesome had hasn't given up on me yet and did come over again while my husband was home so we actually got to sit and chat with zero interupptions. It is partly my fault because I have become totally anti-social. I don't know why because I do enjoy being around other people and talking to females or anyone other than my husband whom I am with 100% of the time. I think partly because I was so consumed by Brendan for so long I just couldn't relate to anyone. I miss having friends and chatting with other females but I understand it is hard for other people to see past this kid in a wheelchair that is always needing me for something.
So I will just enjoy my time in complete solitude. Actually I decided to drive here multiple times today so I could have a vehicle with me and leave the campground and actually go shopping and not worry about a time frame at all! I don't need to worry about a bored child, running home to feed children lunch or dinner or even saying 'no' to their million requests. I get to leave here and do whatever the heck I want and take as long as I want. What does that even feel like? I don't think I know becuase i have't really had that luxery in almost 18 years! So driving over 4 hours today will be totally worth it!!!
So if you are a speical needs mom or any mom for that matter, take some time for yourself. You deserve it. I will do my best not to feel guilty especially when my 5 year old sends me a video of how much she misses me!!!!
I will say Brendan was totally mature about all of this. He came to drop me off and he never melted down about it. He usually would be an absolute mess that I was leaving him with my husband for days but he didn't even make me feel guilty. He told me he would miss me, how sweet is that! I am beyond proud and am so beyond thankful that he continues to mature and grow mentally. I can't even believe how far he has come in life. The little things still blow me away constantly!
So cheers everyone! Time to myself!
Friday, April 17, 2020
Thursday, April 9, 2020
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.
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
Friday, March 6, 2020
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