Living this difficult life

Trying to find shoes that fit over Brendan's new leg braces made me think a lot lately about my son being disabled. By now this life has become the norm but sometimes certain things make you realize how difficult his life is for him and everyone involved in his life. Living in a wheelchair makes everything more complicated. Doing simple daily things take so much longer and requires so much more effort for not only him but whomever is helping him at that time.

For instance, I can get off the couch and go grab a snack in 30 seconds. Brendan can be in his wheelchair in his room and take nearly 10 minutes to get his own snack. He often has to ask for assistance especially if making nachos. We have recently reorganized a drawer and built a snack cabinet to make life easier. He still tries to ask anyone and everyone to get one for him. I can totally understand why because it takes everyone else 30 seconds. We are trying to stop doing everything for him because he really needs to work on independence. He will often choose to skip the snack if someone doesn't help him and this may just be laziness or maybe it requires too much effort. I don't know because I have it easy, I can walk and use my hands appropriately.

Now lets talk about buying a new pair of sneakers. An average person may take a trip to the mall or stop at a few stores to find a new pair of sneakers. They get to try on a bunch right off the shelf and get to choose their favorite color and style. Brendan has to get what ever I can find that fit over his braces. I miss his SMO's (ankle braces) because we could pick almost any sneaker he wanted.
I am kicking myself for not sticking with the SMO's and letting the doctors (here) dictate what he wears. I honestly believe it has not done him any good. I like to think they know what they are doing and I always want to try and help him walk better so I listen to them. I also take his orthotist's opinion into consideration when I bring her the script. This time GRAFO's were decided upon. I was told it would help his crouched walking which I am always trying to correct. I google image searched that style of brace and thought they didn't look too cumbersome and may work well for him. I was wrong! I thought they would look like these:

NOPE! He received these:

I am so fed up with braces that are made 3 sizes larger than his actual feet. I am so sick of the way they are designed that make them nearly impossible to fit into actual sneakers. This time we had to buy 3.5 sizes bigger than his actual sizes in an X Wide. We had to take out the sole and lace them very loosely. We found 1 pair that sort of fits. I don't love them. He won't love them but they should function. I completely failed at one store and had to try a different one. Men's size 7 1/2 is a hard find never mind adding wide width to that size. But at least we found a pair and he can now try out the braces to see if my opinion will change based on his walking. I do not have high hopes.

Compared to his regular sneakers

This also reminds me that the average person can get themselves dressed in just a few minutes. Brendan has an alarm set for 10 minutes earlier than us so he can remove his own covers and sit up in bed. This has been a new goal recently and he is doing amazing! He can't undress or dress himself at all so every single morning my amazing husbands takes this chore on. I have my own routine that I do so don't think I am still sleeping! Remember we have 5 kids, 4 of which head off to school. Getting him dressed, on the toilet and teeth brushed takes a solid 15 minutes and depending on the day it can take longer. If Brendan wakes up tired it takes an extra 10 minutes to get all of that done. Adding the leg braces into the routine can easily add another 5-10 minutes. I will have to time this process! You have to dig out the correct socks and actually get the brace on and then get the dreaded sneakers over them. You can literally break a sweat getting him ready for the day.

We recently had to get Brendan a folding wheelchair so that other people could take him out and about. He has a PASS worker that takes him out into the community and he is also interning at the Police station. Oddly both of them have the exact same very small car, a Toyota Corolla. His job coach drives him to and from the Police Station weekly and his PASS worker takes him to subway. A folding wheelchair has made this possible but you can't just easily fold it up and place it into the trunk. It is a process. First you have to unvelcro the seat cushion. Then you need to unclip the back seat and pop it off. Then you have to pop of the wheels (because it still wouldn't fit with the wheels on), fold down the handlebars, lift up the foot plate that doesn't EVER stay up and always gets in the way when you are trying to fold it and then pull up on the seat to fold it in half. Did you get all that? Yup it is a pain in the butt and that is on a nice sunny day. Never mind doing all of that in the rain or bitter cold. You get soaked. You can't hold an umbrella. You already spent a few minutes shifting Brendan out of the wheelchair and into the seat of the car and now you have to dismantle this chair just to transport it 12 minutes down the road to do it all over again. Crazy right?

I always make comments to my husband about not seeing many people in wheelchairs. I know there are many types of disabilities and most of them don't require a wheelchair but you hardly see them. I think I now know why I don't see them out and about. It is too much work! We actually love when Bren chooses to stay home if we give him the option. It is sad but true. Sometimes I have to run out quick and he exclaims "I want to go" and I have to say "sorry not this time" because it would take longer for me to get him into and out of the car than the entire trip would take. That is reality.

I am not really sure where I am going with this post. I have been thinking about all of these things lately and I want everyone to really appreciate their working bodies. Life is so difficult otherwise. I still fear the future because if his own mother doesn't always want to put in the effort to take him out and about, then who will? I often get sad thinking of him staying home all of the time, watching YouTube and eating take out. It makes me cry. I will have to focus on making everything perfect so that people can take him out and about easily and say Yes to him instead of No. Fortunately we have been creating the perfect house for him which makes life a lot easier for him and for us.

State ID and Golf Cart

A few years ago I made the decision that I would take Brendan to get his state ID at 16 since he isn't able to get a permit or license. We plan on helping the kids get a used car so they can work when they are older. Brendan will never have this opportunity so we thought of the next best thing.

Brendan has mobility issues along with a significant vision impairment due to his brain damage at birth. Unfortunately this means he can not get a license. We are all coming to terms with the fact he will never drive. Brendan has always wanted to drive and has been obsessed with cars since he was a toddler. It is upsetting for all of us but we are trying to make the best of it. Along with his disabilities also comes a huge lack of concentration. He has zero ability to focus, react and process information. These all make for very unsafe driving.

We decided to make his 16th birthday the best it could be. Some kids get a new car. Our kid got a golf cart. We were a bit worried he would be upset because he has literally wanted a surprise car for his 16th birthday since he was 8 years old. Fortunately he loved it and calls it his car.

Brendan had to miss school for multiple appointments one day so I decided to take him to get his state ID. This way he can carry a card with him that looks just like a license. It was a huge hit and he put it right into his wallet. We had a great day together and I am so glad we had this experience. While I saw other teenagers in line for their drivers test while we were there I didn't let it get me down. Brendan and I were there to get his ID and this was an exciting milestone. He really enjoyed the entire process. He got a temporary ID and waited impatiently for the actual ID to arrive in the mail. Fortunately it didn't take months like they said it potentially could. He did a great job taking the picture. We practiced beforehand and then he was told he couldn't show teeth so I am super impressed with how the picture turned out. He had to sit in his walker because he was too short in the chair.





We came up with the golf cart idea while camping in NY last Summer. Everything worked out and we had a golf cart delivered to the house months before his birthday. We wrapped it in tarps and 'hid' it behind the swing set and somehow not 1 child noticed it. Not sure how since this thing is not tiny. We pulled it off and had an epic surprise on his birthday. He chose the key as the very last present unbeknown to him. He was thrown off and had no idea. It was waiting for him in the driveway and he was so overwhelmed when he saw it. He is still on cloud 9 months later.








Over the years I have learned to appreciate the little things and not get upset at what he can not do. He is capable of so much and he is happy with what he can do so we all have to enjoy those moments. We can't focus on what he can't do. He can't get a license, that is a fact. He can get a state ID that looks very similar. He can't drive a car but he can drive a golf cart! Making him happy gets me through life. He is spoiled but that is okay in my eyes. He has a difficult life and I need to make it meaningful.

My heart is ready to burst

I have had so many things to write about it but I haven't had the time. I never seem to get a moment to myself. This just can't wait.

Brendan has been obsessed with the Police pretty much his whole life. He watches COPS, he has dressed up as an officer many times for Halloween and has owned over 20 pairs of handcuffs. He always checks out their cars to see what model they are driving. If he wasn't disabled he probably would become an officer. He is 16 and the opportunity that has been given to him makes me what to cry, happy tears of course.

A few months ago Brendan was telling me that he got a job at the Police Station. I didn't know whether to believe him or not since I had not heard anything from anyone else. I knew that he was going to intern over the next few years but the Police station was never an option. A few weeks later his teacher text me letting me know that in fact Brendan was offered an internship at the Police Station. She asked if we had a different wheelchair so that his job coach could fit it into his vehicle since he drives him to his job weekly. We jumped on this immediately and found him a used folding wheelchair and he was ready to go in just a few weeks.

I am positive that Brendan is responsible for making this happen. He became friends with the high school officer over the last year. He tends to befriend the school nurses and security officers so this was of no surprise. A few months ago he started to earn weekly rewards to eat lunch with the nurse and police officer on Friday's. I suppose this is where he formed a strong relationship and began talking about working there. I had no idea any of this was in the works and I still can not believe this is happening for my son. This town is amazing. The police department is going above and beyond.

I can't even describe my feelings. I get teary eyed thinking about this opportunity given to him. Everyone has always been extremely amazing with my son and he has always made strong relationships with people along the way. Seeing how happy he is melts my heart. He was able to go on a ride along with his officer this week and they happened to witness a car accident involving a deer. The officer had to shoot the deer to end his suffering and Brendan knew exactly what was going on. He had excitement on his first ride along and while we feel badly for the deer we are thankful his first call with a shooting only involved an animal. I understand anything can happen but I can't let fear keep my son from living life to the fullest. This is an amazing opportunity and seeing him happy is everything to me.

The Police Station created a post this afternoon and Channel 12 News got word and contacted the Police Station. The Police Chief called me and asked if the News station could contact me and set up an interview and film him on the ride along. Obviously I said YES! He also gets to go to Dunkin Donuts in town with the Police Station for an event for Veterans in March. This is beyond exciting for him. Thankfully he loves all the attention. He is getting a fresh hair cut on Monday to get ready for the News!

Moments like these make you realize society isn't all that bad. My son is doing just fine growing up disabled in this world. While I can't help feel overwhelmed as he gets older and older I appreciate everyone that we have met along the way that go above and beyond to give this kid a great life. What 16 year old can say they work at the Police Station and ride along with an Officer?

Not a fan of the new leg braces! Pass Worker in the house and ready for Spring!

Thinking back I should have pushed to stay with SMO's. He hasn't even walked in the new braces yet because we can not find shoes that fit them! We hired a PASS worker again and this has really been a blessing. I am so ready for Spring after two whole days of warm weather!

Braces have always made shoe shopping difficult. We actually had it easy for a few years, three years to be exact. Three years out of his 15 years wearing braces we were able to go to the Mall and grab sneakers, any sneakers he wanted. Now we are back to these huge braces that cause him to need shoes 3 times bigger than his actual size, and sadly no I am not exaggerating. I measured him at the store! This year he happens to be in the most difficult size. He measured a 7 Men's with the braces on which is also a 9 in Youth but I am not sure they even make 9 Youth because we couldn't find anything. Apparently size 7 in Men's is almost non existent as well. Not only do we need size 7 but we need a size 7 in at least an X Wide. This should be fun! I know he needs ankle support but I don't think the AFO's nor GRAFO's are going to help his crouching. I have always thought the more rigid and higher braces in the end cause him weakness. The orthopedic and orthotist see him crouch while walking and talk me into these huge braces. I am really irritated at the moment and need to leave this house on my own, braces in hand and hunt down some sneakers! Lugging him in and out of stores isn't fun, especially in the Winter.

We finally hired another PASS worker. It has been a few years and I think we forgot how nice it is to have some help. He gets him off of the bus a few times a week and helps him settle and get a snack. He has been learning to get him into his stander, which is still a work in progress and has him go into his (new Freedom Concepts) Chill out Chair to stretch those legs a bit. He takes him to the bathroom and showers him every time he works. Brendan loves to shower daily and we only say yes every other day since he needs full assistance. Brendan loves being able to shower more often with his new aide. While it is always odd to have someone in our house, the extra help is amazing! I am not running to his bedroom 5x while making dinner and feel much less stressed out. I am loving him going into his stander and into his chill out chair multiple times a week. I don't feel as guilty not having the time to do everything that I want him to do and that alone is worth having someone else in my home. We need to get used to it as it will become the norm after he turns 18.

Is it Spring yet? We just had two beautiful days after a few weeks of extremely cold weather. Today was in the 50's and made me want Spring to arrive so badly. I have already been itching for Winter to be over and it feels like it just started. At least the ground hog didn't see his shadow this year, that has got to mean something, right?! I am ready to go camping again and finish our pool area and go on walks with the kids. Brendan has actually been riding his bike all Winter except for the last few weeks due to insane cold temperatures. He was riding with temps in the 30's and I love it! He got a larger bike this year from Freedom Concepts since he outgrew his last one.

42 more days and counting until Spring arrives!