Channel 12 news

Friday, April 17, 2020

Freedom Concepts bike rides

Saturday, March 14, 2020

It is tough being 17

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

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

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

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

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

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

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

Wednesday, March 11, 2020

4 minute Work out Challenge



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




Sunday, March 1, 2020

To YouTube or not to YouTube

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

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

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

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

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

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

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




Sunday, February 23, 2020

Night to Shine

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


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

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

His face seeing her:



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

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


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




Friday, February 21, 2020

Cardiology, Orthotics and SDR Anniversary OH MY!

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


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

Recovering from SDR 5 years ago today:

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

Very happy to be leaving that appointment:

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

Happy at this appointment:

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

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

Thursday, February 13, 2020

Sleep.....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.

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!

sleep mask for the win:

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.

She is lucky she is cute

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.


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!

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.



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!





Sunday, January 19, 2020

Dreaded 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.

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'.

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.


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.

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.

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.

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
they get a curve in their spine.

Right hip surgery 2007. A few weeks after he was smiling and happy:


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.


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.

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!

Need 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! https://capital.one/2NL3I0M (or copy and paste into your browser since I have been having trouble getting my links to work)

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!

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!