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!!