An actual medical term?!?

This is the medical term of what goes on in Braydon’s mind when he gets upset at things that most kids/teens/adults can be told to get over or stop, for him he cannot. Yes, even Us his parents are caught telling him he needs to knock it off, but that is just us trying to work through the toughest of situations we have faced with him. Glad there is some form of identification of it and it helps people understand he isn’t being a teenager or spoiled child, wish that was the case for sure.

Staying your path

I recently went on a road trip to pick up my son for spring break from college. Anyone who has ever travelled through southern Wyoming knows that any time of year on I-80 is a gamble, we actually spent 16 hours sleeping on it quite a few years ago, but that is another story. So as you can guess I am not particularly fond of it. I thought it was good and late in spring and would be able to sail through with no issues, yeah right! As we approached 15 miles or so before Laramie, the warning signs were lighting up “slick road conditions with low visibilty” we were thick into it and no turning back. Reduced speed and distance were my friends. I watched a semi right in front of me attempt to pass another semi and immediately go into twisting, jack knifing  and sliding all over, I still don’t know how he overcame this and was able to stay on the road. I was far enough back but if he slid off I would end up being hit by his trailer or having to maneuver my car to avoid hitting him, so very thankful for small miracles like that. As the conditions started to clear up I was saddened to see all of the MANY trucks that didn’t weather as well. I think we counted at least 8 that overturned and were in the middle of the interstate. I seriously had blisters on my fingers from holding my steering wheel so tight the entire time. After arriving to our hotel for the night I prayed that night with gratitude for arriving safely and for the return trip to have less of those conditions. As I lay in bed thinking about what we had seen and made it through that day I couldn’t help but relate it to our individual paths in life. The weather being our literal storms in life. The slow and steady pace that I was driving was doing what was right. The semi that started to lose its direction was someone who was tempted and overcame those temptations. Coming out of the storm and seeing the overturned trucks were those who had fallen off their pathways of life. The blisters on my hands were repentance and that sometimes you have to hold tight and it may hurt at times but in the long run it steered you back to the right path.  I couldn’t help think I had visualized what it must be like for our Heavenly Father watching over his children and how he must feel for each and everyone of us wether we are on the righteous path or temporarily fallen off.  I have driven back through that same area a few times since then and each time I try to see exactly where we were when the storm came upon us, but none of it looks the same to me with or without snow, so interesting. 

Friends

One thing I have learned over the years it is great having a good friend. I have had many over the years and I have a few  for many many many years. Everyone has this struggle,  this is nothing special with our individual family’s dynamics at all. However:

I have learned that no matter what at some point some time there is a change in my friendship due to our special situation. We call it the “friendship honeymoon phase”. It isn’t malicious or planned, but it happens. No matter how hard I try not to come across with the slightest envy or jealousy,  it happens. No one knows exactly what it is like to live our lives except us as it is the same with me knowing how their life is too. It is the simple fact that we are all human and are far from perfect. What do I mean exactly? How many times does someone want to hear, let alone see it with their own eyes that we will forever be taking care of our child, that is extremely difficult for some to understand and the few that see it or get it are such a blessing. For example: Innocently many times I am in the midst of a conversation about the couples only trip, empty nesters and the one that gets me all the time is “we just let the kids fend for themselves and we go off to bed”. That uncomfortable feeling they get when I may be discussing our future and they realize that will never happen for us. It isn’t their fault, nor do I want pity on the fact that we have this challenge. It is by far the hardest thing we have endured and the challenges change as the years go on. What we have learned and how we have grown from it will always outweigh the challenges. Personally for me as an example I can only be around a person who is negative about everything in life for so long, so I see how things change as realizations come to those around us. Every friend that we have ever had always holds a special  place in our heart and lives. We learn so much from each of these friendships we have had as I know each of those friends have learned so much from us and what we bring to plate. 

No one should ever feel sorry that they are doing those things and we can’t or won’t be able too. We should always be happy for others when they are enjoying what life brings them. After all life is a journey, not a competition. 

Missionaries

Missionary work is amazing I am a product of it and will be forever thankful for the path it has lead me on.  My husband chose not to serve a mission, we married in the Vegas temple during the time he would have been serving a mission and almost 26 years later I am thankful for the life I have and feel greatly blessed. My children are my all and are the blessings that have come from the choices we made in the temple all those years ago. We are not a perfect family by any means and sometimes we get so held up in the culture of things that we forget these young men and women take on such a life changing choice that we may not hear what they really are feeling or they try not let us know until it is too late and they can’t buoy themselves up to it. 

D&C: 124:49 Verily, verily, I say unto you, that when I give a commandment to any of the sons of men to do a work unto my name, and those sons of men go with all their might and with all they have to perform that work, and cease not their diligence, and their enemies come upon them and hinder them from performing that work, behold, it behooveth me to require that work no more at the hands of those sons of men, but to accept of their offerings.

This scripture couldn’t have come in a more appropriate time and has given me comfort in knowing my boys have served “with all their might and with all they have”. Two days or two years they have faithfully and honorably served a mission. 

Special needs envy??

Is there such a thing as special needs envy? I see myself sometimes looking at other special kiddos and how they are able to do things that my son cannot & feeling a little jealous. Weird to think that we can have a jealousy amongst our special kiddos, right? It is true though. I remember years ago I was sitting in a lesson in church and the instructor was talking about how she had wished her daughter who struggled with mental illness had Down syndrome. The comparison she used was not the best, but the idea of what she said struck me so odd. I had two little boys at that point and I could only think that what she said was so not fair to anyone struggling with a kid who had any difficulties. Fast forward today and I can totally see where she was coming from. How nice it would be to have our son feed himself(teenage boy would like to eat all day long right now), feeding him takes a minimum of 30 minutes at a time. To be able to tell us with his own words what the heck is bothering him, that would be amazing. I could go on and on about the “only if he could’s”, but with that jealousy I know we would not have the amazing things that he has taught us because of what he is. So yes, jealousy happens amongst the special needs parenting life for sure. In the past 16 years of raising Mr. B we have heard it all, “you have been given this child because you are strong” “He only gives you what you can handle”, “I don’t know how you guys do what you do, you are amazing” you get the idea. People really do mean the best when they say these things. Most of the time it would be good to hear “how do you do it?” & I am so thankful when someone says “you guys have it hard, but you make it look easy” because that is the goal. We know we have it hard, no denying it, but when we hear from someone who sees that we are trying and let’s us know we are appearing to make it look like that then thank you!! I am thankfully jealous of what we have and couldn’t do it without the amazing guy  that I have by my side to help make it through each day. 

Traveling the world with our family, well here's our reality folks

We love to go on vacations to many places as a family, but reality is that we cant go everywhere, it is just too complicated.
We recently were able to finally get Braydon on a plane ride. This was the scenario. We flew to go to Disneyland. Most may know this, but in case you don't Braydon has a problem with laughter. It causes him to get upset and start to kick and want to be out of earshot of the laughter. Very hard thing to have such a hard time with since it is such a normal thing for us all to do. So think of being stuck in a plane with someone who has laughed and to Braydon he will wait and anticipate the next laugh so much that he will freak out and want away from that person immediately.(This has been the hardest thing to work with on him and it still is a work in progress) Also Braydon is too big to sit in a car seat on the plane(at least his seat his too large to fit in a airline seat) so Justin had to sit next to him and have an arm around him the entire flight, constantly pulling him up as he would slide down in the seat. He did this for the entire 2 1/2 flight, Justin is amazing, but gosh that stinks because I don't think we could do it any longer than that. Renting a car isn't easy either one that will accommodate his large car seat and wheelchair plus our entire family?? Hotel rooms. He usually requires a his own bed and I found these really cool portable bed rails that keep him from rolling off the bed: Find them here  Then there is bathing him. We use a roll in shower with a special shower seat at home, which is not easily transportable. So trying to bathe super strong 5 foot tall kid is never easy. I say all this but want you to realize that Braydon has seen and done more things in his life than a lot of kids his age, let alone with his disability. We somehow make it work. We have too, we have other members of our family too and need to be there for everyone of them. So traveling with our family is doable not easily but can somehow be done.
UPDATE EXCITEMENT!!!!
We all(7 of us) went to Disneyland in October and Braydon has grown so much that he is able to sit in an airline seat with his feet touching the floor, so he basically sat all alone support wise. Also our check-in gate attendant suggested we take the first row, leg room a plenty no one in front of him to kick their seat. It was amazing!!! This is a total game changer for us. Just need to figure out some of the other items mentioned that would make it a little easier for us when we travel.

Our last few months

The last few months we have had A LOT going on. We had family visiting so with that.....

Jake finished his second year of college so we headed out to celebrate with lunch

 

Tony, Lindsay and their kiddos came for a much needed visit. We had lots of fun and visited many places, ate lots of food, laughed and even earned a few years back running after three little kiddos again:

a trip to Lollipop park

  

We had snow in May while they were visiting, nice change for them and certainly made for a change in temps for all of us. We went to the Butterfly pavilion

 

  

Madisyn's last band concert of the school year

 

My mom was here to celebrate her 70th!!! Doesn't she look amazing!! Glad she was here so we could celebrate with her.  We all went out to  her favorite place to celebrate.

 

 

 Which was followed by Cayson graduating high school and 4 years of early morning seminary(church class he attended for four years and waking up at 5am everyday). I cannot believe how fast time has flown by. I have 3 children now that have graduated from high school. What??? Our house is getting so quiet and empty. This is so hard!!! 

   
  

 

 

We heard off to our yearly trip to Glenwood springs. So glad to have some extra family to come along this trip

 

  

 Just before grandma Diane left we made it to the Denver zoo. We had an awesome day of fun there. The weather was perfect. We had animal activity. Mostly had a good day together as a family. 

 

Braydon and I celebrated our birthday. Grandma Diane bought us an ice cream cake, we went to dinner with some of our favorite friends, had lunch with my sister in law and a few friends. 

 

We decided to get back into camping since not going in almost 8 years. So what's a better birthday present then a new camping trailer? 

This is going to be our much needed adventure's with Braydon. So much easier on him knowing where he will be sleeping and having some comforts of home. 

 

Cayson headed off to his last year of High Adventure Scout camp and Madisyn headed off to YW Camp. 

           

Excited to share our summer adventures and all the change that comes with the coming months!!

 

I am honestly a good person but....

For quite sometime now I have been thinking about our life with a special needs kiddo or atleast one aspect of it.  There is a truly good reason that I enjoy my free time. I feel I have earned it  as should anyone, but what I really mean  I am not sure if everyone understands. You see Justin and I have been caring for someone for the last 22 years since the birth our first. I mean we have been caring for someone for 24/7 for the last 22 years. Braydon will be turning 15 this June and since his birth we have been doing everything for him. He isn't able to dress himself, feed himself(you get what I am saying, he needs us for EVERYTHING). As with that I don't think most people understand that when he is at school, I have time for ME. So with that I apologize that I am not one who openly says I would love to watch your kids, because frankly I can't it is so exhausting on us everyday, day in and day out, that when I am free for the day I want to truly be free. I use this time to do anything but think about being a special needs parent, let alone a parent in general, HA HA.  I love invitations from friends to go and do something(HINT!HINT!) because after those short 6-7 hours the routine starts over. This is not a plea for sympathy. I just want people to see it from my perspective. It is hard for me to not feel guilty about this too. I remember being a younger mom with kids in tow and have always been fortunate enough to be home with them. I understand every mom who has a baby along with a toddler or a mom who has young school aged children and little ones at home. I have been there and I have done that too and it is exhausting, BUT I am still caring for one who cant care for themselves. Just think of how exciting it is with each kid as they learn to dress themselves or feed themselves, when they learn to entertain themselves and finally when they are old enough to be at home by themselves? It is a wonderful time in every mom's life to have these things happen. It has happened to me 4 times now, but think about it I am still in the constant routine of  feeding, dressing, entertaining and being this person constantly there cause they cannot be alone. Need I also say that physically the demands are harder as the years go on for obvious reasons, he isn't getting any smaller. I know many of you see Braydon as part of our family because only the strong or righteous are blessed with someone who is such a special spirit like that, but that doesn't make the reality any easier folks. IT IS ONE THE HARDEST THINGS EVER!!!

I wrote about this because I needed to get it out there that even though the typed version of our life sounds rough, I know for a fact we wouldn't change a thing. We've made it work, we're making it work, After all aren't we all a work in progress??

Is it Really 2017??

I wanted to get back into blogging again for a couple reasons, first would be the most obvious to make a record(digital) of our family events, history, etc. and second to share some experiences, lessons, enlighten, and give an overall picture of how we exist and cope as a family with a special needs child.

Where have I been??? Time to catch up

I am going to try and catch up on my blog. I cant believe it has been 4 years since I have posted on this. So much to say and so many photos to add. I think it may be blog overload from me for a little bit while I catch up on this. Updates coming soon.

November 2010

The month started out with Madisyn having a crazy hair day at school. She is the first of my kids to really want to participate in spirit/dress up days at school. The boys never seemed to take in interest in it. So we made some twisty-twirly ponytails all over her hair.

Jacob turned 14 and enjoyed his first gluten-free cake. He is an amazing child. It is nice to know that he willing does everything(most the time days before it needs to be done) on his own, without having to be reminded. He earns all A's and doesn't even have to try too. He sits down everyday and reads his scriptures(can't say he learned that from me). He has already mapped out his next six to eight years. He knows where he wants to go to college and would love to be a writer or illustrator. Have I ever mentioned the stacks and stacks(Not joking) of notebooks that he has drawn and written stories in? He continues to amaze us with his knowledge and is such a blessing to our family.

I think our family dynamics are quite interesting and unique. We have our obvious stand outs for sure, but each one of us is so perfectly fit in our family. Not one of our personalities are the same. We often tease that so and so is our favorite child, but I know all of my children know that we love each of them the same and expect things from them on different levels that they are capable of achieving. Our kids struggle at times, because they know that Braydon requires a lot of our time and attention, but at the end of the day they all know we love them and how important they are in making our family a "FAMILY".

WE had a very quiet Thanksgiving this year. We celebrated with just the seven of us. Since I started working at BBW I knew I would be working on Black Friday, so for the first time in about seven years I didn't get up and go out with all the crazies to do some shopping of my own, but I really didn't miss it this year. I think I mostly missed the fun that I would have with either going out with my sister in law or my good friend Bridget.

More from October.....

This month also came with something I am experiencing for the first time......my very first child got his learner's permit!!! Yes Kaleb is officially driving us around at times. I can't believe it!!!(Not that he is old enough to drive, just that I am old enough to have a child that drives!!!) He is doing quite well. Justin has been taking him out to the school parking lot in the the snow to get some of that experience down.

He also attended his first Homecoming dance. He went with a group of friends. They first had a catered dinner at a friends house, took pictures, then went to the dance and then after a few dances they headed over to a friends house to play basketball, games and eat more of course.

I also took a picture of him and two of his friends at one of our trips to the Halloween store.

Madisyn went to the high school's Spirit clinic, which was taught by the Varsity Pom team. She of course loved it!! Lindsay and Isabel(a couple of Kaleb's friends) took good care of her. They all learned a routine and then performed it at halftime of one of the football games.

Halloween 2010

We enjoyed a snowless Halloween this year and had lots of fun activities. Madisyn and Braydon's school had a Halloween Carnival with a Trunk or Treat. We had our ward trunk or treat and then we had gone out on a chilly Halloween night for trick or treating(my mom was here to help/enjoy this) I only had two dress up for Halloween this year and I was feeling kind of sad. We also enjoyed our visits to the Halloween store not to far from our house at least twice a week for the whole month of October. Braydon enjoyed going there, every time we drove by it we had to promise him we would go and visit or he would keep kicking the back of our seats to let us know he wasn't going to give up on going. We entertained all who where in the store each visit. Sometimes it was just a walk through visit, but most of the time we had to try on the masks which made Braydon laugh (His contagious belly laugh), sometimes it was an occasional scare mom by walking up behind her wearing the Michael Myer's mask. (Now my kids and husband know if they want to really scare me all they have to do is wear that mask!) By the end of the Halloween season the props where no longer functioning, items were sparse, but Braydon still had to visit. We had an enjoyable Halloween this year!!