Learning to Be Brave ..... Again

After getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up                   (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came rushing through. I never expected that many emotions over such a small act.

It was such a small act. But it was an act of bravery. Bravery on the face of a non compliant, yet braver than anyone I know, face. And on the face of a 9 year old boy.

With each small thing, he truly does put on a brave face. But you know who else does. Every single person in this house.

 Grayson gets left out of SO many things and even when he acts out and is hard. He is still brave. Because having a brave brother and having a brother who has special needs and takes up a lot of time. It makes him have a brave face.

Dallas and I put on a brave face, because we see this boy going from walking to not walking. The feelings of him not being able to jump and run, the regression, the sadness and the roller coaster that we don't get a choice of riding or not riding.

So for now, we will start over and learn to be brave all over again.

Starting at ground zero.

Again.

Longest MONTH EVER

This has been the LONGEST month in forever! At first the days went by forever slow because Tyler could do nothing. Then he could want to do something. Now he WANTS to do things and he can't. When he tries and can, we wear it out. Meltdowns are plenty and loud and hurtful too!


So here it is in all it's glory~

Car rides were REALLY hard and we couldn't stay awake....... ever. 

We have mastered go fish with the Paw Patrol. 

We got Tattoo sleeves with stickers to go on top!

We got an invitation from our Best Friends at Sesame Street and we were invited to watch them DANCE!!!! 

Turns out, that my baby grew up the last six months and I don't know where he went. We sure do love him a lot. 

And because our baby Grayson LOVES trucks,  we had to get a picture of the coolest truck in the world....

We wore pants! and took the gross, nasty knee thingy bobby things off for a bit. And we had a few really great leg bends. 

Sleeping with turtles is incredibly relaxing.......

Basketball Games, in wheelchairs, in the kitchen for a while!!! 

We figured out free Student bowling for the summer and were worried that it was out of the question. His Chair fit right underneath his ramp and we had a great bowling session. Grayson LOVED it. That kid has ben bowling since he was 3 months old. He lost by one point. But that stupid ARCADE kills our budget EVERY TIME!!! 

After a day and a half of a meltdown and three workers at a total loss of what to do to help him. With seizure meds and rescue meds and other meds and him biting and screaming. It was pretty bad. We wanted to have him try to play some games and stay off of the iPad and spend some times reading and playing games. We have picked up a few good ones  recently.

During the meltdown we were able to get him into the pool and it really chilled him out!

The weather changed and we made snowmen and Tyler made snow angels to go with it. Of course it was a pintrest fail in the highest level, there than the boys LOVED it. So for that we will call it a WIN!! OH, and yes, it looks like crack.

We sleep in pool watching Octonauts



We are still serving. We have 3 weeks.Then we get the stink feet things off and we see what damage we have done to his walking muscles ad then we have to get PT going. School is not loving our wheelchair option thing. But we have LOTS of things to work on soon.


So till then........ we play with SHUNTS and meet the Pope!!

Fun Friday- With Decubitus Ulcers on top

We try to make every Friday something that Tyler and Grayson can work toward. Usually it is a good activity like Bowling or swimming or some place or thing they have worked towards doing as a family. If he has days at school where he won't do anything or he yells ( turns out he yelled at his teacher and told her to shut up last week at school haha!) he doesn't get to do his fun Friday activity.

This last Friday we thought we would go swimming at a heated pool. He had to work for it. He almost lost it.... twice. And had I seen the paper that he yelled at his art teacher I would have said " Um no!!" but I didn't.

So after Shriner's Hospital we headed to the pool. We also picked the COLDEST day of the week to go but we had a good time. We took our neighbor friend, Sawyer. Grayson adores Sawyer and Tyler is a fish. He just goes and goes and does well in taking care of himself on the slides.

My sweet Grayson who just wanted to run and scream in his Paw Patrol Pants. 

Tyler and Sawyer. Ty was climbing back UP to the little slide.

Tyler soon decided that the regular slides were not enough for him so he asked to go down the big twisty slides. So him and his worker, Ciera, climbed up to the top 5 times and and he went down and LOVED it! The water was not overly warm but it was heated. But it was only 77 degrees outside. For us Arizona people, that is COLD!! We were super duper cold. Once Ty got cold his foot instantly turned in and he started walking on the top of it again. He was dragging it and just walking wrong. I carried him a bit, and Ciera carried him a bit. 

A side note about Ciera-


Ciara joined our little family over a year ago. We made a schedule with her that worked for all of us. And for some reason we have embraced having her here and we feed her for dinner and we do our night routine after we all have had dinner. So we sit as a family with her. She prayers with the boys, she eats the food. She helps with the boys and she is fabulous with Tyler. She climbed into the pool with him and cradled him around and just talked to him and did all that he wanted to do.

I feel truly overly blessed to have her working with our family. In fact, we have always been blessed. The last 2, Kelsey and Brynne we have LOVED them as well. Kelsey was just in a place she needed no  extra stress or hours and Brynne needed better and different hours. But for Ciera we work for her. We have hired some help for Ciera this summer but no one can take care of Tyler like Ciera can .

After we got home from the pool. Ty said that his foot hurt, but we got dinner going and did our dinner thing and didn't think much of it

Mother's day weekend came and Dallas asked me if I had seen his foot. I said I had not. I didn't look at it till Sunday and I freaked OUT!! His entire foot is open and back up to worse than what it was 2  weeks ago.

So that brings us to the Pressure sore.

When Tyler's feet got cold, he started dragging his foot and he peeled off a good chunk of his foot. So back to the podiatrist we went. we was really worried about it. But we went in and they opted to fix it with a laser treatment 4 times in the next ten days to get it to close faster. We do Antibiotic ointment and some bandages, after school we leave it open air so that it can harden up. His poor feet are truly the only thing he complains about.

This is the new sore. The Dry patch and the "spot" was the big one from yesterday's post!

So, this week we are praying that the wound heals fast for Tyler's foot. That we can do our best to keep it small enough that our surgery won't be postponed. 

I think we will keep our Fun Friday to bowling!

The Vizio Fiesta Bowl - University of Arizona vs. Boise State

Last year was our first fiesta bowl. We loved it. We are not " follow every week or we will die" people but we thought we would try it and we liked it. When we were offered tickets again this year we gladly accepted.

Because we knew more about what to expect we didn't wear all of our "winter" gear and just wore our jackets. We knew the roof would be closed and so it was no big deal. But this year, we FROZE!! This year we were also not up in the upper bowl either. We were on the lower bowl in row 38.. That is right... 38!!! They were great seats. But the big doors for the smokers were behind us and we were so so cold.

Before the game we hit up a yummy Gyro/ Greek place to eat before we went to the game. It was so delicious. And I DID take a photo of our yummy food!

We headed in and got our seats and waited for the fun to start. Since it was a local team it was PACKED! And Boise isn't that far away so it was even more fun. However, sitting in the lower bowl no one wanted to sit down in front of us. 

The game was pretty good. However, we ended up leaving a bit early. Dallas has had such an awesome year that he has lost so much weight he has NO body fat to keep him warm. So despite our good time, we headed out and watched the last of the game in the warm. 

*Hopekids is an organization that provides us with amazing opportunities to go to games and events and fun activities for kids with disabilities and life threatening and one of a kind illness'. We are very thankful for the tickets and the fun times we have with them.* 

Christmas Day- Again

After the FaceTime with Grandma and Grandpa Labrum we started our normal night routine and got everyone in bed. I had taken the time to wrap MOST of the presents but we had a few last minute things to put together.

Before we went to bed we finished our very last ornament on the *Jesus* tree and laid out the stockings. We don't have a chimney so we just laid them out. Our Grandma made our stockings and we LOVE them. ( My 4 favorite christmas things are my icicles from my mom, our stockings, our Christ tree and my sister made me a Nativity)

This is our Nativity and our Christ tree. It is by far my favorite place each night!

Santa had done some last minute Christmas shopping like 3 days before Christmas so a few things needed to be wrapped. Oh and one night, while Santa couldn't sleep very well she ordered Christmas and all this STUFF came that I didn't realize I ordered. Ha! 

Every Christmas or birthday I keep thinking " Man I wish Nicky was here so I could pay her to wrap!"  But finally after years of practice and her not being around to pay off, I learned to wrap!

Grayson doesn't sleep through the night so I was hoping to be done wrapping before he got up and walked around the house. ( No I am not kidding about the sleeping through the night. ) He got up AFTER I put everything together. But as I was setting my camera and my remote, in walked the best picture opportunity 

This was on the back of the camera but it was PERFECT!!!

Tyler asked for very few things but his things were specific. Enjoying the spoils of the day!! 

We did get girl stuff for Christmas. Everyone loves it. The doc mobile was taken out and sent to the park as fast as they could get. They also wore their underpants all day!!!

Ther rest of the day was playing with our toys and making dinner and mushrooms and just being a family. It was GREAT. Our Grandparents were coming the next day so we were super excited to see them.

I never thought there was "enough" presents under the tree, but there was. I always think I do give enough to them, but I do. I don't require much to be a happy mom at times like this. There was plenty to go around.

This last year was nothing spectacular. Nothing fabulous and we just were here. Just like I like it. Drama ( mostly) free and surrounded by those who love us!!!

The Christmas Post

Since our tree JUST went down yesterday and I still have an hour or 2 of cleaning to do before it is all gone, I thought I would take the rest of my "homework" time to catch up on my December. I jumped ahead to the first of the year but want to make sure the Holiday Fun was documented.


Because we live in the Deseret the evenings are not horrible and so the holidays are very enjoyable. We spent a lot of time outside and most of the time we didn't need anything more than a jacket. The boys did a lot of playing outside for HOURS at a time.

One day while we were just minding our own business the North Pole Transponder showed up at our house. I am pretty sure it was the Elf that provided books every night. But the transponder was AWESOME. It would call the North Pole once every 24 hours and we got to talk to someone. A few times it was Santa. A few times it was an Elf but every time it was FUN!

We went to a Christmas party for Hope Kids and had a great time. It was at the party that Tyler spent his entire time playing basketball, that Santa made a last minute decision to buy a basketball hoop for Tyler. 

We split up at the hope kids party and I didn't take enough photos for each of them, but Grayson had a snow ball fight and he loved it. 

Grayson undecorated and redecorated my tree a million and one times. By the end of the season, I had a section of my tree with everything from icicles to a BOWL!! I found a bowl in my Tree when we were taking it down. 

We did our traditional visit to Santa and the Farm. We have seen the SAME Santa for 4 years. He is getting old and he doesn't look overly thrilled but he is the same one! 

Feeding goats and the blind donkey was a HIGHLIGHT of our night. Oh wait, no going by the poo pond was my kiddos favorite thing! 

This rabbit is from the Velveteen Rabbit story. It was so so soft. The kids loved it. Next thing we did was go on a hayride in the dark, right past Poo Pond where they deposit the poo. HOLY gag. Cache Valley Cows are still by far my favorite smell. The poo pond was BAD.. real bad. 

We played with salt dough but it was not enough to make it smell yummy to give to our friends. So we just played with it. 

No holiday can go by without a quick run to the pediatrician's office, where we had to get our hematocrit checked. Grayson was a beast and we KNEW he was low but needed to know how low to see if we needed to be checked in or not. So off to the doctors we went. 

We are low. VERY low. But we were not admitted and we have just done what we could to get through the exhaustion.

Christmas PJ's by the Labrum grandparents and we got to FaceTime them while we opened it. 

Next up...... Christmas ( the Santa part!) and Christmas day!! 

First December Activity

The week after Thanksgiving, Grandma and Grandpa Brown came down to help G and G "Warmer." They spent a few days there and then came here. Getting ready for Christmas and visitors was a lot. And sometimes, days are long for us! So a shopping trip and plans were made.

We had 2 very excited kids. We had high hopes of having such amazing warm weather but we really had a bit of rain.

Ok, we had a lot of rain.

The day of the big storm, I did everything in my power short of duct tape, to keep Grayson out of the park and out of the water. It didn't work. Oh and he has been potty trained for a bit now, but with visitors wouldn't use the bathroom because "Grandma might see my Pirates." So we went through LOTS of clothes. In Arizona, you don't use long pants all that often, so he doesn't have THAT many to go through. We washed A LOT!

We had planned to go to the Mesa temple lights that night and we had planned to make hot scones and hot cocoa, so the fact that it rained made it even a better night to do it all. 

We headed out to dinner and the lights. We made it to the lights to start touring and the boys LOVED it. The nativity scenes there are really beautiful and the reflection pool are done up so well. We waited for a while for our dad to come but he was really slow. ( A painful confession followed the slowness later!) 

I asked some of the Missionaries there if we could walk up close to the nativity scene so that he could see the scene. Grayson, Tyler and I were able to go right up and look. The Nativity was carved out of a specific wood in Italy. It was gorgeous and so life like. Tyler and Grayson looked at the Wise men and then did the the baby Jesus. It was so, so  cool!

After we got home we checked out our Elf, who happens to bring us a Christmas book every night instead of something I have to clean up and actually do the next day and then our Christ tree. We headed to bed and then the adults enjoyed the evening of scones and hot chocolate. 

This season has been one where I feel totally and completely blessed. We have made and done some things this year that have left us at peace. For a long time we have had to make choices that have left us some what drained. However, after making some better choices and putting up boundaries and allowing us to set our own rules and relying on each other we are definitely in a different place. 

We can't wait for the new year and to see where it brings us. 

Halloween

Halloween was a HUGE success and fun in our house. We had our church Fall Festival a few days before Halloween and we were worried that Tyler's costume would not be ready in time. I try really hard to make his costume exactly what he wants, so we look months ahead. Grayson got what he wanted as well. However, when the day of trick or treating came he had changed his mind and went as a Airplane.

But Ty won Best Costume at the Fall Festival:

 

Grayson was a Green John Deere Tractor: ( Of course it HAS to be Green.... Red tractors are not real tractors!)

We also did pumpkins. Tyler wanted Goofy and since he doesn't really carve them, his worker did his. Grayson just wanted a face and I did a bat. Dallas... well he wanted Cartman 

Mickey Mouse - Live on Stage

Along with all the fun party stuff, Tyler got tickets to Mickey Mouse Live on Stage. Normally we would need to buy the tickets and pay a billion dollars extra to get close enough that Tyler can see or hope that whatever center we are at, allows for accommodation tickets. We have only gone to the Delta Center in Utah and not the Airway Center in Arizona. But the accommodations that they made for Tyler were amazing.

Our tickets were for the second row! Tyler and Grayson were so excited. Tyler did a great job of handling the countdown for it and was ready to go on the day of the " Talent Show." We headed into downtown.

SOOOOO funny!! 

We made our way to the floor and enjoyed the loudest concert we could have ever watched. But the characters were great and Tyler loved every second of watching his best friend Mickey Mouse and Goofy.

The best part.... The joy and excitement on the two boys' faces. Oh how I love and adore them both!

It isn't your right....

When I was 21, I made a decision that has literally changed my life. Some of the things I learned were not until recently and some of the choices that I made and some of the things that I learned haven't really been apparent until the last six months. Some even the last 3. But that choice has changed who I am and who I want to be.

I went on a mission. I was called to serve for the duration of 18 months. I served 15 and after plenty of discussion with my mission president,  came home. I was honorably released and spent the next 5 months talking in every single ward in my parents stake. Some people thought I had done something to be "sent home." But that was not the case. I was honorably released and I served the Lord to the best of my ability. 

I have been in contact ( thank you facebook) with some families that we SO crucial to my mission. They are the people who you think about often. One girl I taught found me on facebook. She is active, but only recently got baptized. She sends me a message every few days. Another came to Arizona and came to visit after I had my hyserectomy. She was so pivotal in how I saw other people. 

So as I was talking to one of these families, they were laughing and said that they couldn't believe how Molly Mormon I was. I was shocked. I had never been told I was a Molly before. This person said that they were shocked that I didn't judge them. And that I was not condemning their actions, even though I knew that once upon a time, this family was not the way they were now. 

This really took me by surprise. I asked Dallas about it and he said that I really was a Molly. In that it never crossed my mind to think badly of people or to judge them until those people had judged me or hurt me to the point of not wanting them around anymore. 

Then this last week there has been some things on Facebook about minding your own business and that it isn't our job to judge. I truly, truly believe this. 

Betty White said "...Mind your own business, take care of your affairs and don't worry so much about other people." The reason I like this is because it is TRUE. 

I was so consumed by other people that I let Facebook drama and family drama, and other people drama, to worry me. I couldn't do what I know I should, which was to do as my mission president told me when I finally learned to serve. He told me " Forget about yourself and go to work. You can't show charity and love if you don't forget about you and go to work." ( President Quist) 

I am not a missionary any more. But the idea is the same. If I forget about myself there are plenty of ways to serve. But you can only do that when you do truly forget about yourself. You stop worrying about other people. You don't worry who has what, who has more money, who is getting more time with grandparents, who is hurting your feelings or a many array of things that truly don't matter. Instead you get to work. You look around you and say " Oh look, that person on facebook said they were struggling today. Maybe I could take them dinner." Or " Look, my mom is really struggling today with her self esteem, maybe I should send a card." It won't even get there for a few days but by then YOU have forgotten about it and you have ust made that persons day. You do that as a mom daily when you don't worry if they have the best clothes, an ipad or even vacations, but you truly love them, cherish them and put them first. 

Another of the things that has been brought up by others in our mission is the quote " My God, my Companion and me. It is just us a three." Life went so much better when we put someone else first. I struggled with that for SO long. But when I have spent the month focusing on Dallas, life has been So much better. Why? Because showing him Charity ( or the pure love of Christ) has shown him how important he is in our family unit. It has given me a whole new respect for him as my spouse and to allow me to think of someone else. In turn, I have been able to count my blessings and see where I am even more blessed than I realized. 

My sweet Auntie Loretta posted this the other day. I found it to be very profound. 

I can do so much better at his. But this is what I am working on this school year. Think of others and not myself. It isn't my job to judge other people. It is only my job to love them.

Summer Camp and San Francisco

We had one week after school was over to have Tyler at home. The week after he started summer camp. I was not sure if I wanted him gone every afternoon. The week he was home, we went bowling and to the indoor play place. It was great, but Dallas was getting ready to leave for a week and we REALLY were hoping to figure out how to balance no dad and every one's stuff.

Dallas was sent to WWDC this year. His app has done really well and has been featured on the app store pick of the week and summer for most of the last 2 months. ( I guess that makes up for the time that he didn't come home for a month) but it also got him to the conference, which he loves attending and it was such a great year for him to go. They announced a new language, a new system and networking is always fun there. He even went to the "exclusive" twitter party. ( OK so here is my sarcasm... What kind of a party is it, if it is just geeks and trust me, watching Twitter that night was HILARIOUS!) But he was gone for the entire week and it was up to me to figure out how we were going to do this summer thing.

This year we decided to put Tyler into summer camp. He had never done a summer program before so we opted to not travel but do the non travel group. He is there every day for 3 hours and he LOVES it.  He also earned a few hours at the local bowling alley and the arcade. After a few days of Dad gone, we decided to head to Flipside.

Tyler and Grayson got the 3 hour pass so that they can play way to long on things that take FOREVER but they both LOVED it.

We played the infamous mini bowling for 4 games. And then headed to the arcade. We played a ton of games and then we decided to try the bumper cars! Luckily it wasn't very busy so it was just Tyler, me, Grayson and our worker. I was not sure how in the world Tyler was going to drive this thing. But he tried. We got him out into the middle ad bumped him a few times and spun him around. It was fun to watch him.

Grayson did great. He was in HEAVEN!! I swear he would live in a car if he could. 

By the end of the week we were SO thrilled to have our dad home that we could almost burst!! Dallas has lost a ton of weight and when he got of the plane and we were looking for him, we almost missed him!! But Oh it was so nice to have him home. The boys were thrilled. And to make it best, Dad brought home apple shirts and everyone slept in Apple gear for the night.

 

We were so excited to see when our dad was and well... they were a BIT specific!!! we watched them take off.... OH we were ready for him to come home. 

It is nice to have our little family together. Dallas makes life much better. He is just this solid person in our lives. The day he left Ty had a seizure ( or what we think was a seizure) and I was on my own. And I realized that I CAN do it on my own, but I would rather do it with him!

Huge congrats to Dallas for a great app and hooray for the weight loss. You look amazing!! 

The many faces of Grayson

Trains....... Things that move...... Garbage trucks. No really, if it goes down the street and makes noise he wants to see it.

He is a creative little toot for sure. But when he wants to relax and kick his feet up, he will find his own way to do it. 

We have never had a neurotypical kiddo, so my over active/ hypochondric self tends to freak out. Our awesome PA is always willing to listen. But this kid gets more than his fair share of "smart" app time on the Ipad. He eats rocks and sometimes, you just gotta LOVE that little cute face. I love that face! 

Our trips to Tori's "par ma see" is one of his favorite things. And usually a baby comes with him. Oh how Tori at the pharmacy loves his little face! 

Every morning he is in bed with me and he says " Mommy I need a cuddle." But he HAS to be in my bed. He never sleeps alone. Nothing we have tried works. I am his big fat security blanket. But his sleeping is my most favorite thing. He is so sweet. He has to be holding my hand, or hugging me or touching me. And just a hand on his sweet heart to know he is still with me, sure does heal a broken heart a little at a time.  ( Now if only he will sleep when we move to our NEW HOUSE!!) 

But his MOST favorite thing is to sleep in a sleep over with his brother. He wants to sleep in Tyler's bed every single night. He has even left my room and his room to go curl up with Tyler. Thankfully, Tyler sleeps through it all. 

And he always finds cool ways to be Grayson. 

He is a pretend play freak. Loves to make pizza's, fix cars, drive cars, and play in a kitchen and best of all, he takes GREAT selfies!

This little kiddo gave me has been so hard and so rewarding. I am pretty sure that it is just payback for all the things I did as a kid and all that Dallas did. But most of all, we wanted him so much. We did everything we could to have him. We had so may procedures, and so much heartache to get him here. We had more drama than we EVER wanted when we finally got pregnant with this sweet spirit. We were told we "ruined" someones life and ostracized and blamed for things that were just mean, mean.( which by the way, these same saints didn't exactly tell us in a way that allowed us to process the last 4 kids, because empathy is not their forte) But all we wanted was someone to love. Some sweet spirit to have for Tyler to have a sibling. He is the icing on the cake for us. He keeps us on our toes, he gives us no sleep. But he is the best and perfect brother for Tyler. And perfect sweetness for me and Dallas. 

* Disclaimer: While it has been brought to my attention that I am hurting someone's feelings by voicing my feelings that happened when we found out we were pregnant with Grayson. For writing in my blog, I am sorry that it hurt your feelings. My feelings were and still are hurt but my apologies.*