tag:blogger.com,1999:blog-86692563784791705372024-03-13T00:18:53.476-07:00Our So Called CP Life (raising a child with Cerebral Palsy)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.We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.comBlogger220125tag:blogger.com,1999:blog-8669256378479170537.post-89289412086498392352020-08-23T17:55:00.002-07:002020-08-23T17:55:35.387-07:00Me, 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!
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So cheers everyone! Time to myself!
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com2tag:blogger.com,1999:blog-8669256378479170537.post-52445305606199327452020-04-17T17:44:00.001-07:002020-04-17T17:44:25.764-07:00Freedom Concepts bike rides<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/QyrqgBjHfHE" width="480"></iframe>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-45655958431186612732020-04-09T17:34:00.001-07:002020-04-09T17:34:38.907-07:00Brendan's adult bedroom is almost complete<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/bmvXO0oKc5Y" width="480"></iframe>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-55430805561231898402020-03-14T11:51:00.002-07:002020-03-14T11:51:25.746-07:00It is tough being 17Brendan wants a job. This is very difficult because he really doesn't seem to understand that he is not capable of holding a job. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
Any advice would be greatly appreciated. We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-52776027079148461022020-03-11T18:38:00.001-07:002020-03-11T18:38:16.305-07:004 minute Work out Challenge<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/AoK8w4wqyCg" width="480"></iframe><br />
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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!<br />
Try it!!<br />
Look up Bright Side 4 minute Work Out<br />
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<br />We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-28970003801594601492020-03-06T13:26:00.001-08:002020-03-06T13:26:46.664-08:00Brendan's bedroom and bathroom. Changes coming! <iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/wC9UDcEudX4" width="480"></iframe>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-91800188183279723002020-03-06T13:19:00.001-08:002020-03-06T13:19:20.582-08:00Here we go!<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/7xaWOLz4tXw" width="480"></iframe>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-79207848206932042362020-03-01T18:18:00.000-08:002020-03-01T18:18:09.597-08:00To YouTube or not to YouTubeMy 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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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So we will see if I actually follow through as I seriously don't feel like I have a moment to spare. <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-26998849702821963622020-02-23T17:18:00.002-08:002020-02-23T17:18:31.395-08:00Night to ShineBrendan 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. <br />
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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. <br />
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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. <br />
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His face seeing her:<br />
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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.<br />
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Derek got him out of his chair to dance with his buddy: <br />
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My teary eyes because apparently I will be emotional for life:<br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-18507217562062734642020-02-21T05:04:00.002-08:002020-02-21T05:04:59.339-08:00Cardiology, 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 <br />
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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. <br />
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Recovering from SDR 5 years ago today:<br />
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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.<br />
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Very happy to be leaving that appointment:<br />
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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. <br />
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Happy at this appointment:<br />
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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. <br />
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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! <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-31693183998908352362020-02-13T16:16:00.001-08:002020-02-13T16:18:42.069-08:00Sleep.....or lack there of I was beginning to accept the fact that we just would never get a full night sleep ever ever again. Occasionally we would get one here or there but never multiple nights in a row. Why you ask? This is due to many years of having babies and our beautiful 5th child that just doesn't sleep, at least not through the night, as well as our aging dog. <br />
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This adorable child of ours has not slept well since she was 4 months old. She is now 5! We have tried everything. All of our other kids have always slept very well. They hit the age where you have to let them cry it out and which is horrendous for a week but then they sleep all night long, seemingly forever. Not this child! We used to have to make her cry it out as a baby monthly, no lie. I never understood it and 4 years later I still do not understand. We tried a higher quality mattress, more clothes, less clothes, more blankets, less blankets, a weighted blanket, night lights, fans, music, a sleep mask. We even bought the Alexa night light that has certain colored lights to let said child know when it is okay to get out of bed......nothing and I mean nothing works! <br />
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sleep mask for the win:<br />
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We have tried a sticker chart, a reward after sleeping 5 nights straight which she literally has still not reached! We have tried yelling at her, we tried being super sweet and nice. For a while we would robotically just get up and 'fix her blanket's or just tuck her back in and sleepily crawl back into bed. Some nights she wakes up multiple times and we literally want to scream! We always take turns. Occasionally the other person doesn't even hear her or wake up due to severe sleep deprivation but usually we are both woken up disturbing our sleep cycle. Sometimes she cries from her bed or just loudly huffs and puffs, other times I feel like I am in a horror movie as I suddenly wake up to a child tapping my face or whispering 'moooooom'. I feel like I am sleeping on edge lately and hear her footsteps creeping into our room even when there are no footsteps in order to avoid waking up to a person staring at my face! We can't even grasp this concept that our child doesn't sleep through the night. She is our 5th child. We know what we are doing. The other children are amazing sleepers. Yes they have all scared us half to death walking us up due to a nightmare or a headache or not feeling well but not every single night! We are 40 years old. We are getting tired. Very tired.<br />
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She is lucky she is cute<br />
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We realized she sleeps great with a sibling in her room and desperate times call for desperate measures so every weekend her brother would join her for a sleepover. They both love it and we were so excited to get some much needed sleep.....so we think but then we remember our aging dog that decides to bark until we let him outside somewhere between the hours of 12 AM and 2 AM. Seriously, what did we do to deserve this?! We need solid sleep to even have the energy for 5 kids, take care of our house and run a business. <br />
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Recently we hit our breaking point. We decided her brother can not sleep in her room until she sleeps all night, every night. We have no other choice. She has been doing really well because she loves when he sleeps in her room. They are the cutest siblings. The kids bounce around bedrooms on the weekends and all really enjoy their little slumber parties. This is working and she is doing much better, thank goodness! <br />
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Now for the aging dog. He sleeps in the basement which is two floors down from our bedroom. Two children have bedrooms down there and I believe he tries to avoid the cats. He is old and goes to bed around 8 pm. We try and wake him up around 11 pm to go out one last time but even that doesn't work. His bark jolts us awake yet no one else in the house wakes up so it is always on us. He won't even come back in the same door you let him out so you have to walk to the other side of the house which happens to be the coldest room in the house to let him back in and this occurs anytime of the night between 12 am and 4 am. We recently tried waking him up at 11 pm and letting him out and then taking him into our room and wishfully hope he sleeps the rest of the night. This worked for a whole 2 nights! This week we did the whole routine and got him settled upstairs and the cats scared him so downstairs he went to awaken us hours later. <br />
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So our sleeping dilemma may never end. Lily has been doing well this week and has been sick so I am very proud of her. The dog has not. We did get a whole 2 nights so I guess we will take that! One day we won't have a dog and the kids will be all grown so I guess we will just have to wait for that time in our lives! <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-42987411712415728612020-01-19T09:25:00.002-08:002020-01-19T09:34:56.695-08:00Dreaded X-Ray day If there was one thing I could ask for Cerebral Palsy not to effect it would be the hips and spine. Okay, maybe there would be many many things but these parts of the body have stressed me out for 16 years. I fear and stress over every single X-ray day. His right hip osteotomy was the absolute worst surgery he has ever been through. His spine was actually okay until around age 12. I was actually blindsided when I was told that he had a curve and let me tell you it has added a whole new kind of stress to X-ray day. <br />
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People always comment on how strong you are when you parent a child with disabilities. I never understood it. I always laugh it off. I have never felt strong. The people that say that don't see me stress out or cry for a month or melt down into a blubbering mess right in front of the doctors or desperately try and hold back the tears because your son is staring at you and all he is listening for is 'surgery' or 'no surgery'. <br />
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Sometimes it does hit me that I have become mentally stronger, much stronger than I was when he was 1 years old and every doctor appointment was a knife to the heart. But is it strength or tolerance? Am I so used to receiving bad news that I am mentally prepared for it? Can I just turn off that part in my brain that wants to melt down at that very second? Is this strength or something else? I literally talk to myself while waiting for the doctor. I tell myself wait to hear what he has to say, maybe there are other options besides surgery. Maybe it isn't that bad even though it looks horrendous. Did you know the nurse leaves you in the room staring at this horrific X-ray of your child? You start to understand X-Rays when you see them every 6 months to a year for your entire child's life. I was immediately caught off guard the moment I walked into the exam room and the X-ray, that never looked like that before, was staring me in the face. I knew it was his and I still asked the nurse "is that him?" I knew it was his because after we left the X-ray room we walked down the hall and of course my observant self caught a glimpse of an X-ray on the screen behind some windows. While I thought to myself "that better not be my kid", I knew it was. <br />
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As I wait for the doctor Brendan asks "is it bad?" and I say "it doesn't look good" because I am always honest with my boy, I try to mentally prepare myself. I wanted to cry. I immediately text my husband a picture and commented that it looks really bad. I am ready to lose it but I start to talk myself down because I really hate crying in front of doctors, it is beyond embarrassing. So I tell myself that I don't know if this picture 100% means surgery, maybe there are other options like bracing or having better supports on his wheelchairs, maybe add therapy or stretching. So I calmly wait for the doctor and he talks to me for a long time. I really liked everything he had to say. He knows I am not pro surgery. I am not saying I won't put him through surgery but all of the surgeries I have chosen were to try to better his life. His right hip osteotomy at age 5 did not do that. I have regretted it ever since and I have overly researched everything since. I feel like I didn't know enough back then. I didn't know there were other options. I didn't know anything except that his hip was 100% dislocated and we tried many things to stop that from happening and none of them worked. I was told he had to have surgery and so that is what we did. I trusted a doctor that in turn messed up his leg position for life. I may still hold that one against him 12 years later. <br />
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The doctor said we don't do surgery based on an X-ray but rather take everything into consideration. I don't think this was always the case but this doctor is one of the best scoliosis doctors in RI. He jokes around which definitely kept me from crying. He made a point to tell me some doctors in Boston would perform surgery only based on this X-ray (hmmm wonder if that is the same doctor Brendan had), but he has learned not to do that. Brendan has a 50 degree curve (which I obviously looked up later that night and found out that is a severe curve) but it is not causing him pain, breathing issues or any other problems so we will leave it. He said if any of those things change we will revisit this conversation. He explained that if this curve drastically changes in 6 months we will have to fix it. He also said that we never truly know if this is the right decision. He has regretted some decisions before while performing extremely difficult surgeries and wishing they had done them years earlier. He said if I told him I wanted to fix now and be done with it he would. I did not ask for that, in case you were wondering. I did listen to everything he had to say and I will keep all of it in the back of my mind because I do know it can change. He explained that he didn't think Brendan would benefit from having a rigid rod in his back. He thinks it would hinder him and his abilities and that is the last thing that I want to have happen. He said that Brendan uses his body to move around and having a stiff back may look good but it will also make it harder for him to walk and independently do things.<br />
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I left feeling okay about everything. I completely understand it all and I wasn't even upset. I often get depressed after his orthopedic appointments. When I was told his left hip was out of place by 40% I went into a sad place for a solid month. I couldn't snap out of it but instead of doing nothing I sent his X-rays off to two other doctors for their opinions. I was 100% against surgery but I wanted other professionals to be on my side. If they said he should have surgery then I would have sucked it up and been there for Brendan every step of the way. But they didn't say that. They actually said 40% out can be normal for a kid with CP. They said at his age his bones are hardening and it may never move again. Now there is always a possibility and that possibility made Brendan's RI doctor nervous. He wanted him to have surgery to fix it now instead of later because it would be more difficult with solid bones. I had to make the decision and live with it. I decided against it. <br />
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His doctor told me this week that he was really surprised that his hips were stable. He really thought he should have had surgery but basically we proved him wrong and we are fortunate that his hips haven't moved. He seems to think we are in the clear and didn't recommend surgery. I have seriously been putting this surgery off since Brendan was 8 years old. I still remember another RI doctor, that I didn't much care for, laughing about his left hip and stating that "hip is taking a beating"! I was pregnant and yet again cried instantly when the doctor suggested immediate surgery. I was pregnant with his sister, Makayla, when I was told he had to have his right hip surgery so it was total deja vu. Regrettably I couldn't handle it and just ignored his hip for a good year. I think it was only out 20% and I knew surgery wasn't going to happen while I was pregnant or had a newborn to care for. We had the same conversation a few years later but I still didn't want to hear it. My gut said to not do it and I have trusted my instinct for 9 years and here are we being told we don't have to fix his hip. Do I question if it has caused his curved spine? Yes, but no one has said that to me. I even asked and was told no. Many kids have scoliosis that don't even have CP so apparently he is just unlucky. I am friends with a few moms with teenage boys with CP and they also are going through the same exact thing. They start growing and <br />
they get a curve in their spine. <br />
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Right hip surgery 2007. A few weeks after he was smiling and happy:<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiYf7icXid3FkZue5d3nzlSOFsJu_-eWxe_3So610xdSqFip6R-V2_ZwSD8UuoejjsZNYNnsacmhUdUSreDG-pUQ68f7TFWbCQooWRw5sambRGGJ2GIeCd0g4TpXbCCKjpksQfBUb8MGs/s1600/rhip.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiYf7icXid3FkZue5d3nzlSOFsJu_-eWxe_3So610xdSqFip6R-V2_ZwSD8UuoejjsZNYNnsacmhUdUSreDG-pUQ68f7TFWbCQooWRw5sambRGGJ2GIeCd0g4TpXbCCKjpksQfBUb8MGs/s320/rhip.jpg" width="240" height="320" data-original-width="720" data-original-height="960" /></a><br />
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You may look at Brendan and think that he looks great, he is well off, he may even look like he has mild CP. Yes he can talk, he can use his phone and computer and he enjoys life. He is hardly sick and hasn't ever spent a night in the hospital due to illness but let me tell you he has been through a lot. The spasticity from his CP effects his body. His prematurity definitely effected his body. He has had 13 surgeries, 13.... all due to being born early and his lovey brain damage that still tries to destroy his body.<br />
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So mentally I am not sure how I am strong, maybe I just have to be. Some days I don't want to be but I am for him. <br />
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So here is to another 6 months without surgery. We are going to try a soft brace when he walks, rides his bike and exercises but he doesn't have to wear it all the time. It is more for support and to make him feel more comfortable doing all of these things. Keep him in your thoughts and lets all hope for a positive X-Ray in 6 months! <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com9tag:blogger.com,1999:blog-8669256378479170537.post-20299263574577306692020-01-19T07:39:00.000-08:002020-01-19T07:40:24.286-08:00Need a new Credit Card?I have always loved Capital One. It has been my favorite credit card since day one. I recently signed up for a new card to help pay for our Disney vacation because it had so many awesome perks. Click this link to sign up! <a href="https://capital.one/2NL3I0M"></a>https://capital.one/2NL3I0M (or copy and paste into your browser since I have been having trouble getting my links to work)<br />
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This card gives you 18 months with 0% interest. This can really help pay off some bills. You can also transfer from other cards and still receive 18 months at 0%. They have you pay a small fee but I have used 0% transfers for many many years and it saves you a ton of money. Interest really adds up and normally the 3% fee is less than one month of interest you will get charged. This card also gives you a $200 bonus after spending so much money in 3 months. Another really great feature. Free money doesn't come very often in our lives. Just use it for gas or groceries and you will easily get a $200 credit which you can apply right to your card. In our house that is a free week of groceries! <br />
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There are no cons to this credit card. Going on a vacation, need to repair a vehicle or need to pay off some other credit card debt, then this is the way to go! <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-21597233893140793572019-12-08T07:33:00.004-08:002019-12-08T07:33:52.485-08:00Let's talk about some apps to earn you cash back!As a mom of 5 kids I have done a lot over the years to save money, earn extra money and get the most out of my money. I have always done things on the side in order to earn extra cash. I have always sold items I am not using on craigslist and now on Facebook. I even made birthday cakes on the side when we only had 3 kids. In case you didn't know I actually attended Johnson & Wales University for Baking & Pastry Arts, I even went on to got a degree in business. Many moons ago. <br />
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I also partook in extreme couponing before I had my 4th child, after him I lost any and all free time. I even had a stock pile. I would grocery shop at multiple stores and save more than I spent. It was pretty awesome but extremely time consuming. You really had to research and actually purchase coupons ahead of time to get them in time for the stores sales. It was intense but my husband did help with the research part. We watched videos and really got into it. I had a huge binder of coupons I always carried around because sometimes you lucked out and had a random coupon to get something for free. <br />
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After I had Andrew there was literally zero time for this. We also started up our business, Tiverton Tots LLC, while I was pregnant which put us on a different life path. I had to put all my time and effort into that all while raising 4 children. <br />
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The first app I ever joined was Swagbucks. If you want to check it out join with my referral link: <b>https://www.swagbucks.com/refer/sviv3 (please copy and paste, I can't get links to work lately)</b><br />
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Basically you earn 'Swagbucks' which you can trade in for gift cards. I always trade for PayPal because I like the extra cash. Years ago I would trade for Dominos or Amazon gift cards. They have a ton of options. I find this app to be the highest in return because 2500 Swagbucks = $25 in PayPal cash. That is easy to attain. You can join the Facebook group and get free codes every day that give you a few Swagbucks. You can play trivia games at night and fill out surveys while watching tv or relaxing. You can also use their links to Shop online and earn a % back on items you are already purchasing. That is the best! It is entertaining and easy once you get the hang of it. I have earned $500 over the years. <br />
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I joined some new apps last year and absolutely love them. Everything takes a little time but I have earned $570 cash back on one app alone! Ibotta is currently my favorite because you instantly earn cash back, you don't have to trade points in for gift cards. Once you hit $20 in your account you can transfer to your PayPal account. <b>Use my referral code: Beihsti for IBotta</b>. <a href="http://https://home.ibotta.com/"></a><br />
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Shopkicks is the 3rd app I frequently use. I have earend $150 from Shopkicks since April. I am close to earning another $25 and am actually going out today to scan and just walk-in some stores. You can scan items at the store you are already in and can also get 'kicks' for just walking into the stores. Sometimes you can literally just drive by them and if you have your app open you receive kicks, CVS and Walmart work great for this! This app is really easy and can be fun. You can also earn kicks from in store purchases and on-line shopping. <b>Please use my invite code: SAVE508049</b>. We both can earn a bonus if you use this app right away. Just walk into a CVS, TJ Max or Walmart to name a few. <br />
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If you have any apps you want to recommend please let me know! I am always looking for ways to save and earn cash back. This family is expensive but every little bit helps and saving over $1000 a year on items I am already purchasing definitely helps with those bills. <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-66667972365752351982019-12-01T19:30:00.001-08:002019-12-01T19:30:32.152-08:00And then he was 17I am still not sure how I have been a mother for 17 years. Almost half my life now, although I can't imagine life any other way. It seems surreal that he will be an adult next year. He has had a great year and has really progressed in so many ways. I am very proud of him. He still needs to mature and learn how to handle his emotions but overall he is so far beyond what I ever imagined. <br />
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I thought back to his birth this year probably because his birthday actually fell on Thanksgiving this year. I was able to think back and not break down. Okay I may have gotten a bit teary eyed, it is impossible not to. That day changed my life and was just the beginning of his very difficult life. 17 years later I can say that we are doing awesome. He has seriously come a long way. <br />
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I decided long ago to take this life day by day. The future scared me. I couldn't handle thinking about months ahead never mind years. I couldn't picture our life, I couldn't imagine what he would be like or how he would act or if he would talk or walk so I kept my sanity by taking it day by day. After all these years I still live by it. I actually hate when I do have to think about the future and unfortunately that time is here. <br />
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I have to plan for his future at this point. I have to choose a path for him. I have to think past high school. I have also had to realize that he really isn't capable of holding a job. He has had some great opportunities and he is always out and about trying new jobs with his job coach but in reality he can't handle much. He has only one limb that works well. His brain is still not the typical brain of a 17 year old. He still has very little focus or motivation. I am just thankful he has been given opportunities and he is still living an extremely fabulous life. I do worry it will become boring. I worry that he will be a hermit and live in his bedroom. I do worry that people will stop being awesome and taking him out and going above and beyond. All these worries haunt me. Thankfully he doesn't seem to worry or be concerned for his own future. He lets me take care of all of that! <br />
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I try and not focus too much on the scary future because it will take me down the path of depression. I have avoided therapy and medication all these years so in order to keep it that way I stop myself from obsessing about things that I can't control. He has been happy and healthy and that is all that matters. We have avoided major surgeries and we just keep chugging along. I try my best to give him a good life. He has had an amazing year and has hit all the goals we created for him this year. He self transfers for many things and has taken a lot of physical duties off of us. He is now my height and almost my weight so it has become very difficult for me to lift and move him so I am fortunate he can help a lot! I tend to hurt my back instantly if I do need to lift him.<br />
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The days fly by and here we are with the countdown to 18. We continue to change the house to meet his needs and will continue to do so in order to help him be as independent as possible. In a way it is exciting to enter a new chapter in his life, I just hope that it goes as well as the first 17 years. He is one lucky kid surrounded by so many people that love him and treat him with respect. I am honored to call our town home and really appreciate our community that goes above and beyond to make this kid happy. <br />
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3 officers showed up to a birthday party at his school. The nurse held a little celebration for him at lunch time and his teacher sent me a picture. He mentioned that he was eating lunch with the nurse for his birthday but I had no idea they would have a little party and that 3 officers would celebrate with him. It is all about the little things and these little things make a huge impact on this kid! <br />
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Happy Birthday kid! <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj95aKVHHiPXYPMg9s8DoqNrC6_JKWW_ij7R-widFd7aXHNPIWNn7jUESDF9anj4UZ6DyOv8Jzx6vJ0FvCiQrqNW8ajxUJHVheqDW5rSYnwgPy-g1KcuMK_qYBIBa1DvmTJ0c8rkdgNgbI/s1600/bren172.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj95aKVHHiPXYPMg9s8DoqNrC6_JKWW_ij7R-widFd7aXHNPIWNn7jUESDF9anj4UZ6DyOv8Jzx6vJ0FvCiQrqNW8ajxUJHVheqDW5rSYnwgPy-g1KcuMK_qYBIBa1DvmTJ0c8rkdgNgbI/s320/bren172.jpg" width="240" height="320" data-original-width="720" data-original-height="960" /></a></div>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-31694189516035227462019-11-04T16:13:00.002-08:002019-11-04T16:13:51.694-08:00Time flies when you have 5 kidsSeriously the days are just whizzing by me. Where has the time gone? I swear Brendan just turned 16 and yet it is already his Birthday month. Chloe just finished working her very first job. She is only 15 and was hired at a Farm for the Fall Season. Every weekend she got to help all the lost people in the corn maze every. Makayla has offically surpassed me in height and she only turned 12 recently. Andrew is a busy boy and becoming very self sufficient. Our sweet Lily, known as the princess around here is going to be 5 soon. She started preschool this year and she has changed so much in the last few months. <br />
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Every year the eldest child has a birthday, as they all do, and we are all shocked at his upcoming age. Even his siblings can't get over him aging rapidly. We all couldn't believe when he became a teenager and then he hit 14 and 15 and 16 and now he is turning 17!!! It sounds so old and grown up. His sisters are baffled with how fast life flies by and recently exclaimed "next year he will be an adult". It is fascinating watching them all grow up before our very eyes. Facebook memories get you every time! You just can't believe how much they change in just a few years. Seriously once they hit 12 they start to become little adults. Memories pop up from 4 or 6 years ago when they are only 6 or 8 or so and now some are fully grown adults and no matter how many time Facebook shows you (like every single day) you are just shocked at their transformation. <br />
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We are sort of lucky because we still have the 4 year old to gush over. On the other hand we are really sick of giving showers, cutting nails, brushing hair and getting kids ready for bed but we realize all of the sudden they do everything themselves. I will miss all of that bonding time. We hardly ever even see the 15 year old. She does comes up for food or to ask for money. Our 7 year old showers and dresses himself so he is already on the path to independence. He even requests showers and actually remembers to bathe every other day. He is better than the older ones, well except for Brendan. That child lives life on a schedule so he has no issues reminding us when it is shower day. Most teenage boys stink and don't care about being clean but not Brendan. He is the complete opposite. Over the years I realized how alike our boys are. I always tell my husband, I never knew how typical Brendan really was until we had Andrew. Brendan has always been a total boy and most of those annoying quirks he had growing up apparently was just a boy thing. Playing with light switches, opening and shutting doors for literally no reason, making annoying sounds, having zero attention span....yup he was just being a boy. Who knew?! <br />
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Lily has been a busy little bee lately. Preschool has changed her. She loves to color and draw and cut paper.... Lots of paper like if I have to sweep up any more pieces of paper that are all over my dining room I may cry. She attends school from 9-3pm and continues to be non stop the minute she walks through the door. She is always off crafting something. We know exactly what to get her for Christmas and it will go into her bedroom so she isn't destroying the dining room an hour before dinner needs to be on the table. She is still very shy but preschool is helping her come out of her shell. She has made some friends and gained some confidence. She rides down slides all on her own now and had a blast at her brother's school Halloween party. Also, for the first time in 16 long years I did not have to walk to a single door on Halloween. She seriously ran up to the houses all by herself. She even tried to avoid going to the same house as her brother, Ms. independent. I can not even believe that I got to sit back and watch and yes I got to sit because we took Brendan with us in his golf cart. It was seriously the best Halloween ever. I just waved to our neighbors and happily sat and watched my 4 and 7 year old run all around collecting candy. We have earned this! 16 years of trick or treating. Many many years lugging Brendan up to the doors, in and out of wagons, strollers and wheelchairs. The last two years he took his bike which was also awesome but nothing can beat us all sitting in the golf cart and enjoying ourselves. <br />
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The days are still busy but not as exhausting as they once were. 4 kids are off to school by 8:15 am and then Lily heads in at 9 am. We actually get to go to work without any children! We don't have to keep them entertained, we don't have to feed them, we don't have to clean up after them all day long. It is peaceful and we get so much work done. It is very odd but in a good way. We have owned our business for over 7 years and have children with us since the day we opened. At least I know Lily is off having a great day and we get a break from all 5 kids for a few hours. I leave work at 2:40 pm and pick up Lily and then grab Andrew and head home to clean up and start dinner. We put 3 kids to bed at 8:30 pm and then try and relax until bed time. We don't have too much going on right now as far as sports. Chloe has cheer but walks home at the moment because practice is after school which is nice. Brendan hasn't started basketball yet but I can just swing by to get him after I grab Lily when that starts up. Makayla joined drama and is helping with an elementary art class once a week so we have a few pick ups but nothing crazy and the best part is we live right down the road from the schools so it takes no time at all. It is so much easier now that the little kids are older because I don't even have to pack them up, they can stay home with any sibling for 5 minutes. No sleeping babies to worry about, no coats or shoes to run around the house to find because they decided to take them off in the upstairs bathroom. Nope, I just say I will be right back and head out the door. These are the little things that a mom with many kids can appreciate. Running to the store and leaving them all behind is amazing. Getting to go on a date with my husband because our 15 year old can take care of them is the best, mostly because we don't even have to pay for a babysitter. <br />
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So somehow another year has passed us by. Brendan turns 17 on Thanksgiving. My mom and her husband are off to Arizona already for the Winter. The leaves are falling fast and cold weather is approaching. 2020 will be here before we know it and next year at this time one of our children will be almost an adult. I am trying to enjoy all the moments, whether chaotic or not because I know one day they will all be adults and all of these hectic days will be in the past and I will have a quiet house and miss the absolute chaos that I have come to secretly love. <br />
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Throwback of Brendan since it is his birthday month and then the 3 oldest:<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4EKOYyHlb5HCDVpD7rZC0UVcuYJlOKpaIY0CQ3fFO2DD26kE6r6HDphvc4oRHxfeJcK8EFTM8YVrdANNFDeb7tgOtWo0a0jdER8hBZgGgkg6PtetPdg8B0AIG7snOpXbnvsdpdNk0-pk/s1600/FB_IMG_1572912212418+%25281%2529.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4EKOYyHlb5HCDVpD7rZC0UVcuYJlOKpaIY0CQ3fFO2DD26kE6r6HDphvc4oRHxfeJcK8EFTM8YVrdANNFDeb7tgOtWo0a0jdER8hBZgGgkg6PtetPdg8B0AIG7snOpXbnvsdpdNk0-pk/s320/FB_IMG_1572912212418+%25281%2529.jpg" width="240" height="320" data-original-width="1080" data-original-height="1440" /></a><br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-57380869503935469882019-10-27T08:16:00.000-07:002019-10-27T08:16:04.722-07:00Life is too hectic....I forgot to post about Summer CampWow 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. <br />
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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. <br />
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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. <br />
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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. <br />
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I told him girls would be at the camp and he smiled about that!<br />
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Super nervous leaving the hotel!<br />
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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. <br />
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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. <br />
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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. <br />
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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. We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-68522375084972351192019-10-23T17:23:00.000-07:002019-10-23T17:23:28.458-07:00Brendan 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. <br />
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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! <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBZ26-kWZzvbyEXPxn78TrM9t0KzFttaJvYZkBNBC-PAMvsspUHuYGqswCHRsx1w_vbN_EZ3Ci_FT5VB2_G10rR43fb0bD-cKB4ThozcwuwhVKGd6OpQe8HUFRbTeIE4HoGMzPF2rU0nk/s1600/FB_IMG_1571874518952.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBZ26-kWZzvbyEXPxn78TrM9t0KzFttaJvYZkBNBC-PAMvsspUHuYGqswCHRsx1w_vbN_EZ3Ci_FT5VB2_G10rR43fb0bD-cKB4ThozcwuwhVKGd6OpQe8HUFRbTeIE4HoGMzPF2rU0nk/s320/FB_IMG_1571874518952.jpg" width="240" height="320" data-original-width="720" data-original-height="960" /></a></div>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-13958024534137049872019-08-24T17:03:00.000-07:002019-08-24T17:12:54.128-07:0013 years ago my goals were very differentBrendan was 3 years old. I was just beginning to accept this life thrown at me. I definitely was not through all of the stages of grief. I may have been slightly in denial, but I am not positive. I just remember 13 years ago I made a vow. I said that I would never order Brendan another wheelchair. Boy was I wrong! <br />
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Thinking back to those first years is tough. I still feel sad every time I think about his birth. I just wish I could have changed that day. I wish I went to a different hospital. I wish it wasn't Thanksgiving. I wish people listened to me. But I can't change any of it. Here we are 16 years later. Not only could I not keep that vow, I literally had no control over it. I thought I could 'fix' him if I tried hard enough and did every therapy available. I thought he would progress but little did I know most spastic quads regress as they age. It isn't the proper term because the brain doesn't regress or become any more damaged but the spasticity takes a toll on their bodies and effects them adversely as they age. I had so much hope so no wonder I hadn't reached acceptance. <br />
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It is far from easy being 23 and having your first child endure a birth injury that would effect the rest of your lives. I had friends at the time but they all had typical babies. They all grew and progressed at a normal rate. Over time it depressed me to hang out and see all of their babies growing, babbeling, crawling, walking, talking. My son couldn't do any of that. I had to eventually seclude myself for a while. I had to grow (stronger). I had to learn and I had to prove to myself that I was going to be the best mother that I could be for my son. He didn't choose this life. He got the short end of the stick. He was also thrown into this life without anyone prepared to raise him. My marriage ended. I had to work part time so I could take care of him. Life changed in an instant. I was trying to figure out this new path. I am not sure if denial fits exactly because I did absolutely everything for my son. My life revolved around him. I had set him up with therapy at 6 months old and I accepted everything that was offered. He had 3-5 appointments every single week. I took him swimming and to music gymboree and 3-4 therapists would come to our home. Every single week. I took him to the park and I would take him for walks in his wagon. I kept him busy. I kept my mind busy. It was just him and I at the time. I had all day to care for him. I worked back to back shifts on the weekends while he stayed with his dad and I was utterly exhausted during the only time I didn't have to care for him 24/7. I did it all for him. I don't regret it one bit. He wouldn't be where he is today if I hadn't been so motivated. <br />
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He turns 17 this year and I can't believe it. Kids grow up way too fast. Some days it feels like I just ordered his first wheelchair. It is odd but I still can picture every moment when his first chair was delivered. I wasn't mentally ready and I absolutely hated it. I think the therapists talked me into it for bus transport. He would start school at 3 years old in order to receive therapy because he would age out of early intervention at age 3. It looked huge and it was too big for him. Back then they didn't have adorable little wheelchairs. Although I am sure those moms starting out on this path don't think they are adorable at all. It must have been so tiny because it actually fit behind the drivers seat in my X-husband's car. I can't even picture how small it actually was because in my mind it was a monstrous piece of equipment. I seriously hated that wheelchair and never used it and instead I ordered a Convaid EZ Rider stroller and let me tell you those are the best! We have had many sizes and they have served him well. I highly recommend that brand and for any mom not ready for a wheelchair. <br />
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I would say Brendan was around 8 years old when I finally was ready to order a wheelchair. Mentally I was okay with it. I wanted a power wheelchair mostly because I didn't think he could maneuver a manual wheelchair. His right hand was fisted most of the time and he kept it up in the air. He had very little strength. I was talked out of it and I am so glad I listened. Having a manual was the best therapy for his right arm and hand. He has also had Botox, therapy and arm surgery which has helped him gain so much use. He has been mainly in a wheelchair for 8 years now. That sounds insane! I have still tried everything including multiple surgeries, tons of therapy and working out at home constantly but ultimately Cerebral Palsy always wins!! I can't say that I didn't give it my all. He doesn't want it enough and when I say that I mean he doesn't want to walk. He is content sitting in his wheelchair. He is content having everyone help him. In a way that isn't a bad thing. I rather him be content then hating his life being stuck in a wheelchair. <br />
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I realized that I was the one that had to fully accept it. I was the one that had to change the goals in my heart. I was the one that had to let him choose for once what he wanted. I was the one who had to let go of the control. So here we are days before he begins the 11th grade (yes the 11th grade!) and Brendan just had his first power wheelchair fully approved by insurance. I was oddly ecstatic when I received the phone call. I never thought I would be happy hearing that his 4th wheelchair has been approved but I was. I have definitely hit acceptance 100%!<br />
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I will post pictures and videos once we pick it up. Brendan will soon be the proud owner of a Permobile F5 with standing feature! Everyone said that the standing feature would be denied but his Physical Therapist must have written one amazing letter because I do not have to appeal it. Permobile will custom build his wheelchair and we will pick it up in a month. How cool is that!?<br />
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He will still use his manual in the house and we don't even have an accessible vehicle at this time so he will use the power chair mostly at school for now. I need to figure out the best vehicle for him in the future so that his care takers can take him places as well. I want him to use this chair and love going out and about. He won't worry about fatigue or having people push him around or not being able to reach things. He can push a button and talk face to face with a cashier. He is going to love this chair and he doesn't even know it! <br />
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Stay tuned. This kid will be riding in style very soon. <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-24811548630999538592019-07-11T18:27:00.002-07:002019-07-11T18:27:58.194-07:00Summer FunBrendan is skipping ESY (Summer) School for the first time ever! He has a busy Summer and would have only attended for a little over two weeks so I said why not?! We went on vacation and he is going to a sleep away Summer camp in a few weeks. I am getting nervous! <br />
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We went to lake Ontario for our Summer camping trip this year. It was a great time. Lake Ontario is like an Ocean. I have never seen such a large Lake. The waves were like an ocean, it went on for miles like an ocean yet it lacked the smell. We honestly couldn't wrap our heads around it. Now I want to see all of the great Lakes. The campground was a lot of fun. We stayed at Brennan's RV Beach Resort. It has 3 pools, a lot of activities such as arts and crafts for the little kids, live bands and of course a beach. We took Brendan's golf cart for its maiden voyage. It worked out really well especially since the campground was so large. We used it constantly. Brendan is getting extremely heavy and awkward. Honestly he is getting too tall for me. Derek has to do almost all of the lifting and carrying while we are using the RV. I can no longer safely maneuver him in and out and I always feel bad but Derek just does it all and hardly complains. <br />
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Brendan was really excited for someone else in the house to have surgery. Chloe hurt her elbow during cheer practice back in October. She fractured it in two places. She was given the clear to go back to cheer just 6 weeks later. I questioned this but no one else did so back she went. Her elbow hasn't been right since and today she had to go under the knife. They had to remove a piece of bone and reconnect a ligament. She is excited to get back to normal. Brendan is excited that someone else had to go through what he goes through constantly. <br />
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We have been trying to enjoy life, raise 5 kids and continue to grow our business. Life is constantly chaotic so I love when we hit the road in the RV. I wish we could go more often! I am still surprised at how well our family gets along in a 31 foot RV for 9 days. We have the best family. <br />
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I have been getting Brendan ready for his 12 night stay at camp. I am getting really nervous. I never let anyone else care for him like this. He can not have any electronics, not even his phone! I think I might worry the entire time. I really hope he enjoys it and doesn't get home sick. I don't really think he knows what he is getting into. We have to pack a lot of stuff so I am preparing now. Wish us both luck! <br />
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Time to get some kids off to bed! <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-75940794558621273182019-04-09T04:57:00.002-07:002019-04-09T04:57:25.927-07:00Normalcy There are moments when a little bit of normalcy pop up out of nowhere. It doesn't happen often but it happened this week. <br />
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Most days aren't typical. Most people don't have to help their 16 year old complete daily tasks from the moment they wake up until the moment their 16 year old goes to bed. It has become our normal but some days it hits you more than others at how exhausting, both mentally and physically, it can be. <br />
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I don't normally dwell on it. I just do it. Over the last year we have been working very hard on independence and he has come a long way. He has been motivated for the first time ever in his life. He wants to do things on his own and has been able to do everything we have taught him. We are so proud of him and will continue to redesign the house so it works for him. The next task is for him to be able to get into bed all on his own. He always has to go to bed when we are tired or ready for bed which probably isn't normal for a 16 year old boy. He often goes to bed at 8:30 pm during the school week because we get up to get his 2 younger siblings in bed at that time. We don't get to relax much during the day and we only want to get up once. It takes a good 20 minutes to get all 3 to bed as it is. He gets to watch television or go on his phone (when he has it) so he doesn't have to go to sleep, just go into bed. One day I would love for him to go to bed when he wants. <br />
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As you know from my last post Brendan lost his phone. He normally goes to bed and then listens to music or watches YouTube in his bed. He also calls me a good 3 times from his bed when random things pop into his head. That may sound cute but when I finally get to relax after a long day the last thing I want to do is talk on the phone minutes after getting him into bed. He also calls every night at 10 pm to say goodnight. Since losing his phone this has obviously all changed. He gets situated in bed with his awesome Bobopedic and watches Cops on his television. He has his bed remote hooked onto his nightstand and he has his television remotes on his bed. He sits up and looks very comfortable. <br />
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Over the last few nights I realized that I can't receive any phone calls as he has no phone. He hasn't yelled to me through his closed doors. He just relaxes in his room quietly watching his show. The time comes for us to head to bed and I open one of his doors and peak on him. At this moment I felt the normalcy. My 16 year old has his television off, his remotes on his nightstand, he motorized his bed down and he is asleep on his stomach. He accomplishes all of this completely on his own and I love it. It is my little bit of normalcy in a not so normal life that I have been given. <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com2tag:blogger.com,1999:blog-8669256378479170537.post-1247454599217040212019-03-28T20:02:00.000-07:002019-03-28T20:02:27.377-07:00I try not to post the negatives but.....I was literally talking to my husband about how awesome Brendan has been doing lately. He is maturing and behaving so well. He has definitely had his issues in the past. He has autistic characteristics due to his brain damage and we have worked very hard to help him become the person he is today. Just hours later we got hit with a dose of reality. <br />
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Brendan has never liked answering questions. We have worked with him for many years regarding this issue. We feel it is important to answer questions. It creates conversations and helps people learn about each other. It is a very important piece in communication. Brendan only likes to ask the questions. When he first learned to talk he would ONLY ask questions. Every phrase that came out of his mouth was a question. Over the years he has progressed. After he had SDR his speech greatly improved. He can carry on conversations. I never thought the day would come. I love long car rides with him because we talk and at times it seems so normal. He calls me often when he visits his father and we have real conversations. It is drastically different from years ago in an amazingly positive way. If you ask him a question he responds with a question sometimes completely off topic. I won't answer his question (unless I am not paying complete attention) until he answers mine, this has worked fairly well. At times he can be in a mood and he can't always control his behaviors. <br />
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I don't let autism be an excuse. I don't let having cerebral palsy be an excuse. I don't let being a 16 year old boy be an excuse. I treat him like I treat all of my children. I hold him responsible for his actions. I am not easy on him and never will be. My job is to help him grow up to become a functioning adult. <br />
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Well he decided to test our entire being the other night. Derek had been asking him why his head rest kept becoming loose. He has a head rest on his wheelchair because he is transported in it. Well over the last few weeks it is hanging down and therefore is not in a safe position for transport. Derek has to fix it daily which is annoying. It didn't become loose all weekend so we knew someone had to be doing something at school. We actually have had this issue in the past so we already knew someone was pushing him with it or leaning on it. Brendan wasn't in the mood for a question especially for the 3rd time this week. He obviously knew how it happened but for some unknown reason he didn't want to tell us. It really wasn't a big deal. We just like to keep his equipment in tip top shape. It isn't an easy or quick process to fix his equipment. He decided to go off the deep end. He decided to not control his actions. He decided to try and kick Derek with no success. He then picked up his (overly expensive) smart phone and bite it, breaking not only the screen but the entire display. It is completely broken. Do you want to see mom flip out? Oh yes mom flipped out. Why in the world would he break something he uses daily and loves over a dumb question? We will never know. It is all about control or lack of. I get that he can't get up and walk out of the room. I get that he can't always express what he is feeling. The words don't always flow freely. He can't always explain everything. But I do not get destroying something we spent a lot of money on. I don't get how you can't control your anger. I get mad. I yell but I never ever get physical. I never throw things or break things. No one in this house does. He gets this look in his eyes and he tenses up and he gets a little crazy. He has acted like this from as far back as I can remember. I still remember his dad telling me "I think he is autistic" when he was 2 years old. I was no where near ready to accept that diagnosis but over the years it all makes sense. Does that mean it is okay to act like this. I don't think so. <br />
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So we had a long discussion and decided to discuss his punishment the next day so that we could calm down. He lost all electronics for one full week. Luckily we had insurance on the phone so it only costs $100 to fix. (hopefully) He has to earn this money by dong chores and therapy. We created a list of things to do and he has a jar in his room and he has to earn the $100. He has to request to do the things on the list, we will not ask him. Some of them include cleaning his toilet, cleaning his bathroom counter, taking a walk in his walker, riding his bike 2 miles instead of 1, going into a long sit, going on the vibration plate. All of these things have a monetary amount next to them. It will probably take him over a month to earn the $100 so it should be a very good learning experience. Our hopes are that he learns to control the aggression. He controls his temper. Everyone gets mad. Everyone wants to throw things (or in his case bite things) every now and then but we can't always follow through with what we want to do. I hope that he learns a lot from this event. I hope next time he chooses not to over react. Time will tell. <br />
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Oh to parent in the year of 2019! <br />
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He did still get to go to subway with his Pass worker since he had a great day and accomplished everything he was supposed to. <br />
Apparently he was in a good mood. His Pass worker even treated him to an ice cream sundae after. <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-14565498290594075662019-03-24T07:20:00.000-07:002019-03-24T07:20:29.085-07:00Thankfully Brendan is having the time of his lifeIt is hard for me to express myself in words. I often find that I can write what I am feeling much easier. When I am on the spot I tend to freeze. I need to think about the question and digest it and then answer. <br />
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I wish I could have said so many more things in the news story. Brendan is seriously one amazing kid. Yes he doesn't leave the house all that much but partly because in some ways he is a typical teenager that doesn't want to. He doesn't have that many friends but so many people love this kid. I see it all over town. He can't just go get his license or go get a part time job like kids his age but he gets many opportunities like interning at the Police Station or actually going on stage in a high school play because the drama teacher is absolutely amazing. He is a happy kid. He enjoys his life. Some days are boring but then I think about my 11 and 14 year old and realize that they have some really boring days too. Having 5 kids means that we spend a lot of time at home. We can't spend a lot of money so we hang at home and have family movie nights or take walks or take the golf cart though the woods in the middle of Winter. <br />
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We try to give him a fulfilling life. We have pushed ourselves to the limits with this kid. We have taken him on water slides which means his tiny mother carried him up those huge flights of stairs just so he could experience it. We take him camping and to amusement parks. We always make sure he can do everything his siblings do. Unfortunately it is getting more difficult, I am not going to lie. He is 16 now and 5' tall and only weighs 20 lbs less than I do. Lifting him is getting more challenging. It is hard to maneuver him into vehicles and rides. We took the kids to Disney a few years ago and we would take turns on taking him on the rides. I think it was my last year of being able to walk him over to the ride and lift him in. His legs are so long now that it is really difficult to get him in quickly. <br />
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Running around with a bunch of kids in tow is never easy. Dragging Brendan around with us is even more difficult especially if we are running to a bunch of stores. We have to lift him into the van, take his wheel off of his wheelchair and lift that into the trunk and then do this all over again once we arrive at the store. If we are just running in and out this becomes exhausting. Then we have to push him around half of the time because either he is too slow or he tires and doesn't want to wheel himself around. Although he doesn't have a lot of friends his age he knows everyone. It is always nice to see everyone saying hello to him in the school hallways or if he runs into classmates while out and about. He often is more friendly with adults. He has been like this since he was 3 years old. I always thought this was because adults have been a huge part of his life since he was 6 months old which all began with in home therapy. He has also probably been to a thousand doctor appointments. He has therapy in school and saw the nurse daily for years. They are a huge presence in his life and have always been wonderful to him. They are his friends. He wasn't able to keep up with his peers along the way but adults stay and talk and listen to him. <br />
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Brendan has a great life. He has so many positive experiences and amazing people that show love and support. We never want pity. We want people to see this kid for who he is. He has challenges but has a huge personality that draws people to him. We will never stop giving him the life that he deserves. <br />
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One thing is for sure though. He has the best siblings. 3 of them begged to sleep in his room last night so they had a sleepover. Things like this make him very happy. He loves his siblings to the moon and back. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvfsRz6ZDZPJzJvd-0kTZ9giWo0mvBazDGGsHNvUCSPkWWO_BzVYIVTqZXJtpLUWvia3r-_DxevstLXV3YCLzQdboBqtCzDmL3vdxD2R0TgTs8YrpgJXEzLHgOnYZZPw_xWQQT6Lj3BW4/s1600/20190323_224733.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvfsRz6ZDZPJzJvd-0kTZ9giWo0mvBazDGGsHNvUCSPkWWO_BzVYIVTqZXJtpLUWvia3r-_DxevstLXV3YCLzQdboBqtCzDmL3vdxD2R0TgTs8YrpgJXEzLHgOnYZZPw_xWQQT6Lj3BW4/s200/20190323_224733.jpg" width="150" height="200" data-original-width="1200" data-original-height="1600" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghLeb96Qf6E7r0_3vm3E_zvJ26YiLbrN6eN4h8aKZ8EZ-1uggdhh756sKoaDb4BOBMZYzteJsR2aJ0VQwt5YRPG1IJoggor-WqYPncF3jIHseSUPQ0HqX_9TZuqbnxG03bA1QQUV6ygAw/s1600/20190323_225008.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghLeb96Qf6E7r0_3vm3E_zvJ26YiLbrN6eN4h8aKZ8EZ-1uggdhh756sKoaDb4BOBMZYzteJsR2aJ0VQwt5YRPG1IJoggor-WqYPncF3jIHseSUPQ0HqX_9TZuqbnxG03bA1QQUV6ygAw/s200/20190323_225008.jpg" width="150" height="200" data-original-width="1200" data-original-height="1600" /></a></div>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0tag:blogger.com,1999:blog-8669256378479170537.post-2194370369214068042019-03-23T07:41:00.002-07:002019-03-24T05:43:21.876-07:00Brendan is on the news! WPRI Channel 12 Street StoriesBrendan is in the limelight once again. This kid is meant to be seen and heard. I had mentioned that Brendan is working with our local Police Station as part of an internship. Well Channel 12 News got word after seeing his picture posted on the Police Facebook page and here we are. They filmed him at the Police station, in the cruiser, stopping at our consignment shop and even in our house. It was such an awesome experience for him. He loved every second of it. He is now out with some of our officers at our local Dunkin Donuts for Veterans, elderly and the disabled to sign up with the Police and Fire so they will have it logged into their system. I think this is a great idea. If a call comes in they will already know that this house may need extra assistance. We have an amazing town. I knew that I would love raising my children here and all of this helps prove that. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwhy9106qR15lzPqEuQyyzpLdU07xwsYszfxWJ54Ky4Pl9jKhIxv70JftJZE4YsrmC0Emx8_bLW80Lt6nRpj8iUvO8Ize5uXO0S3707y8tVR5u3lKHMbdyR3UTOK9MEJVkS-U3A5UIjC4/s1600/brenwalt2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwhy9106qR15lzPqEuQyyzpLdU07xwsYszfxWJ54Ky4Pl9jKhIxv70JftJZE4YsrmC0Emx8_bLW80Lt6nRpj8iUvO8Ize5uXO0S3707y8tVR5u3lKHMbdyR3UTOK9MEJVkS-U3A5UIjC4/s320/brenwalt2.jpg" width="320" height="228" data-original-width="960" data-original-height="683" /></a></div><br />
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Brendan is on Channel 12 News. You can try and look at it with this link but I am having issues getting it to post. <br />
You can look at https://www.wpri.com/search?q=brendan%20o%27brien or go to www.wpri.com and click on street stories<br />
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https://www.wpri.com/web/wpri/news/street-stories<br />
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For some reason I can't make it clickable. Just copy and paste. <br />
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<a href="https://www.wpri.com/news/local-news/east-bay/tiverton-teen-on-patrol-in-dream-job/1869400263"></a>We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com1tag:blogger.com,1999:blog-8669256378479170537.post-20718332158729736962019-03-19T18:28:00.001-07:002019-03-19T18:28:07.515-07:00Busy week!Brendan finally tested the Permobil F5 power wheelchair. We actually all loved it. Channel 12 came to our house tonight for over an hour to finish up his news story regarding working at the Police Station.<br />
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Even though I never wanted him to need a power wheelchair I must say he looked amazing in it. I was on the fence with the Permobil due to the front wheel drive but he drove it very well. We were all impressed even the tech from Numotion. He manuevered through the doorway and around a chair effortlessly. The options are very hard to get approved by insurance so we need lots of positive thoughts. I would love the standing option for him. He likes to stretch out his legs throughout the day. As he was testing the standing option out in the hallway the bell rang and there he was strolling down the hallway at the same height as his peers. It was awesome to see. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYn2XSTXcKM3dBWzccmUDr5Yk30jOit_QgWzDnjmN42B25ey4Gt8CPNyzTic-zCw1NNCkXNcWWRqET2rP_h1DUbtEj-OHdSZjy551IvhBHErEieTg_hmCLEzd2WqLtuOMeam3Y1h4YWcM/s1600/permobil2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYn2XSTXcKM3dBWzccmUDr5Yk30jOit_QgWzDnjmN42B25ey4Gt8CPNyzTic-zCw1NNCkXNcWWRqET2rP_h1DUbtEj-OHdSZjy551IvhBHErEieTg_hmCLEzd2WqLtuOMeam3Y1h4YWcM/s320/permobil2.jpg" width="240" height="320" data-original-width="720" data-original-height="960" /></a></div><br />
Walt Buteau with channel 12 news came to the house with his awesome camera man, John. They are filming Brendan to be part of 'Street Stories' with his involvement with the town Police. Brendan wasn't able to be as expressive as we had hoped. He has a difficult time answering questions so I had to be the lucky one to be in the spotlight. I am not looking forward to seeing myself on the news. I wanted it to be all him! They did film him driving in his golf cart and me reading a post from this blog! Fingers crossed I don't cringe through the entire thing! <br />
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The news story should be aired this Friday at 6:15pm, Saturday morning and on the Rhode Show. Hopefully it comes out okay! I believe it is shareable so I will try and share it here if possible. <br />
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We take it day by dayhttp://www.blogger.com/profile/18249059310750320147noreply@blogger.com0