Thursday, September 29, 2016

On the Homefront

We were doing so much this summer that I haven't even had the chance to tell you all the little things that make Our Life interesting moment to moment!

In fact, I started feeling guilty that we hadn't done enough with our kids and then I started looking at the pictures and all the memories came flooding back.

At the beginning of the summer, my niece, Yaya, who's only 5-years old, told her mom that Baby needed some new toys and that she would give some of her favorites to her. (Head tilt and "aw" face inserted here.) They were her stuffed Rainbow Dash My Little Pony and a little pink cloth castle that you can take little stuffed horses in and out of.

I sent Chelsea these pictures so that Yaya could see how happy her generosity and thoughtfulness made Baby.

Her playing is always a hoot to watch.

I love the little moments that Marc and I flirt with each other during the day via text using Bitmoji! I had to snap this one because it made me laugh so hard... I mean who says/does that with a burly beard!?

Baby is a ham... I'm telling you though, her teeth make everything funnier....

I challenge myself to get Brother out into the community with me and it doesn't always go really well. Marc and I try so hard because we want them to have opportunities and not get used to holing up in the house away from civilization, allowing Fragile X to conquer.

When I heard that "Little Mermaid" was going to be playing at the SCERA I knew I would be taking Brother with me.

I tried to go as prepared as possible:
Sweet Tarts candy
Salt and Vingar Potato Chips
Chairs and a blanket

I know the picture below doesn't show it really well, but he was happy to sing with all the music that was playing before the show started.

I tried to get a good picture of him and me, but he wasn't having it.

I think when I get to heaven I am going to have a conversation with Heavenly Father about giving kids special needs AND teenage attitudes/hormones. Oi, just after this picture Brother started to hit me and push me and began yelling at me. I could tell that the people behind me were bewildered and upset... all I could do was laugh because crying would have made us all more uncomfortable.
When it came to Ariel's big number Brother was singing into his microphone at the top of his lungs. I just giggled and tried not to hush him too much. First of all, I was a little nervous to try to quiet him after he'd already attacked me in public and I knew he was having the time of his life and didn't want to not let him.

I had some friends that were in the play, so of course I had to find them after and get a picture!

Brother's favorite character in Little Mermaid is, of course, Ursula! He loves the villains! I wanted him to go up and get a picture with her, but he was freaking out and overstimulated at that point so it was a no go. He was happy to heckle her from the foot of the stage though. It was quite funny and that's how I got a picture of him "with" her...

So while I was getting pictures with friends and talking, Brother was falling apart at the seams and ran from me so I had to go find him. Luckily he wasn't far, but he was crying when I caught up to him. I thought he was crying because he knew he was in trouble for running off, but once I could finally decipher his rantings I realized he had lost his iPod... !!!

Not his iPod!

Please not his iPod!

We had just been in a sea of people and chairs on a big hillside, and now all the grass was laying in the darkness.

I started searching for it in a slight panic while on the outside looking completely calm, and Brother's melt down was getting worse as time went on. At this point I was feeling awkward and worried because we were making quite a scene and I am sure people were trying to figure out why a grown boy was falling apart like a 3-year-old.

Despite what I was worried about people thinking, pretty soon people started offering to help look and in a short time I had 5 others scouring the hillside for a turquoise iPod. I love good people.

I had started to give up. Of course someone had taken it, or if it was taken it went into the garbage or got stepped on. I thought I would keep a little faith and go ask the attendants that were still there if maybe someone had turned one in.

Brother was slurp-sobbing at this point and the attendants could see we were desperate as we approached.

"Did anyone turn in a turquoise iPod?" I asked.

I was surprised and relieved to hear them respond that some one had just turned a turquoise iPod in and she walked to the back of the office and brought the beloved iPod to us.

I am so thankful for honest people.

And I am thankful I made it through that night, even still enjoying the play!

One of the tough things about having children with special needs is that no matter how old they are, you can't leave them alone. Ever. So if you want to go on a last minute date with your friends they are generous enough to send their kids over to "play" with our kids.

We came home late this night and sweet CeeCee had fallen asleep next to Baby on the floor.

And Brother was having the time of his life hanging out till late with Lex and her boyfriend, Eddy!

I love the neighborhood we live in and the friends that help us raise our children.

This picture below of Baby was in the early morning when she climbed in bed with me. She saw my hats sitting on the bed post and wanted to make me smile.

She did.

"What would we do without Ranger?" is a question I ask almost everyday. What a blessing he has been for our kids.

I have to document that I got to dress up as Emma Smith for a Primary lesson one Sunday. I was so excited to play the part of a pioneer, but it was really fun because I haven't been in a play for a while so it was a sweet little jaunt into acting for  a minute. I was so excited about this whole thing that I wanted to surprise Sister and Baby when I came into their class for the presentation. I mean, come on, this outfit is perfect! 

It all went so well. Baby giggled when she saw me and looked slightly confused and then it came Sister's turn... that was a little different. She held it together pretty well, but I could tell she was very upset that all the kids kept calling me Emma Smith and she kept giving me dirty looks.

After we church, before even getting into the car she began lecturing me about lying, and being a stupid pioneer...

I don't know why I thought surprising her was a good idea.


I just have high hopes, I guess.

It took about a month before Sister would stop lecturing me about being a "Fake," a "Liar" and a "Stupid Pioneer."


Like you have learned, we are gluttons for punishment so we decided to take our kids rock climbing with our friend, Maria and her family.

I mean, how bad could it be? We'd done this with the kids before and it was disastrous, yet rewarding. This pony has been ridden. We knew what to expect.

There was the expected whining, complaining and occasional scream over a flying bug, but we were hanging in there. However, we were surprised that Sister wanted to get in the harness and up the rocks this time!

I teared up a bit seeing her face such a big fear and giving it a good shot. We were so proud of her and how well she did and that she wanted to try.

It didn't go without her screaming and yelling from fear and anxiety, but it made for an awesomely depictive photo of her...

Another highlight to my summer experiences was singing with my mom, sister and aunt for my church group, Relief Society!

I love performing.

I miss performing.

I miss performing with my family.

Check out my stance... hee hee!

Sorry if you didn't want to read more catch-up, but I actually needed this today because I've been feeling like a failure. Looking through these pictures and remembering the moments that went with them has helped me realize that I am trying.

Trying is good.


Thursday, September 22, 2016

Rainbows Only After the Storm

Where have I been?

I'm not even sure to be honest...

Life moved forward without me and I have been trying desperately to catch up.

Our kids started school and all of a sudden I'm starting to plan for Halloween!

I spent most my summer volunteering with the kids' summer camp so that Brother could attend more often than his temporary respite was funding at only two days a week.

Sister and Baby get to go to Summer Camp five days a week and it was so hard on Brother to have to stay home. He felt left out and upset and frustrated.

Brother LOVES Summer Camp, but really the people there, so how could I not volunteer a few more times a week so that he could go as often as possible?

It certainly wasn't easy.

Well, at least not all of it.

I finally had to make sure I was never in the same classroom as my kids because they really didn't like me being there and made sure to let me know.

They love me, I think, mommies just don't belong at school, I guess.

I even had a bit of a scare by helping with one child that got overstimulated and I stepped in to help out. It was in those moments that I realized, "Wow! I know what I'm doing! I've learned a lot just being a mom of FX kids!" It was as if I had earned my bachelor's degree and I was finally realizing it... heck... I have 3 kids with special needs... I earned my Doctorate, by dang!

There were the easy times too when I got to photograph all the sweet cuties and their buddies and when I got to make art and draw pictures for their activities and announcements.

My Little Ponies were this summer's theme according to Brother, that's what I printed off for him daily to reward him for doing good things and finishing his chores. His "allowance" of ponies were plastered on 2 of the walls in the classroom. Baby and others joined into help him plaster ponies on this walls and it made for a bit of a sentimental moment when they had to take them all down at the end of the year.

Brother's friend, Rachel, was a a great compliment to his coloring fetish and encouraged his creativity in making up his own cutie marks and ponies... it was adorably cute!

Sister LOVED writing on the dry erase board and it became humorous to watch her "correct" her teachers' spelling or "check" the long and improbably math problems she would create for them.

Jeremy was often there to help her out with spelling or to "solve" her math problems.

Heather, who was over the entire Summer program had a theme for each week and this was part of cowboy week!

This was how Brother and Sister accepted their Olympian awards... ha ha ha! 

 I even got to create these stick horses for cowboy week and they became one of the favorites to keep around for other activities. I just love how into this "calf-tying" competition Sister was... I don't know where she gets her competitiveness from...

I wish I could share all the photos of all the kids, they are beautiful for so many reasons!

Sister really had fun working on her sports skills while at camp. It was so fun to watch her improve and grow and see her confidence get stronger as she tried and succeeded at new things.

I had the most fun watching her play soccer, not only is she good, but she is such a crack-up!

She getting in the "zone"

I tried not to volunteer on swimming days much as it seems that the other volunteer work wore me out enough, but it was fun to be there a few times.

Brother made and strengthened friendships as summer camp this year and it was such a joy to watch him bloom socially.

 In between the kids being at summer camp, Marc and I managed to go on a backpack overnighter with friends.

I was a little surprised at how much I enjoyed it and realized how much a needed a break from caregiving.

I REALLY wanted to jump off the cliff into the water but it made Marc nervous so I refrained... maybe next time!

This was such a treat for my first, with Marc, backpack trip and was absolutely beautiful while we were there.

Then we decided to take Brother on a backpack trip...

Let's just say that it wasn't the best idea we've ever had. 

We try so hard, as parents, to expose our kids to everything possible and sometimes even things that are impossible. We don't want to give them the excuses that so many would take without hesitation. We want them to have all the experiences life has to offer.

Sadly, this backpack trip proved to us how limited we truly are in what we can/should expect from our kids.

I'm glad I'm looking back at it.

It took me a good few weeks to recover from the emotional strain, and physical stress of what it took to get Brother to our destination and out of our destination. Even still, weeks later, I feel a little raw just thinking about how hard it was to keep Brother moving forward. He screamed, cried, threw his backpack, pouted, stomped, yelled and melted under the hot sun almost literally.

Complete and total misery the entire time on our way to the lake where were going to camp.

Marc and I kept questioning our decision to bring him along and continued to discuss what we were going to do when it came time.

We are very blessed to have dear friends Drs. H who helped keep our heads above water during this hike. They really understand Fragile X Syndrome so they usually knew what to do.

I'd like to think for a moment that I was as helpful and smart as they were while I was helping at summer camp

Once we got to our destination Brother was happy as a lark and couldn't get enough of throwing rocks into the water. He was so happy. You would have never known he was so miserable on the actual hike.

I lugged my real camera on this trip and I was glad because it made what was one of my most miserable two days of my life look like it was nothing but fun and beauty, even packing it with me added to my misery... oh boy did it ever! But you would never no this by looking at these images!

This was Brother's favorite lake, Hope Lake.

Happy at the lake shore

His spot for throwing rocks

When it got dark the five of us were having a riot of a time utilizing my tripod and slow shutter speed to capture light images! It was so much fun and Brother was giggling with pure joy.

my elephant

Namoi's brain... I know, who would have thought that a neuroscientist would be excited about drawing a light brain...

Naomi, Brother and Ryan

Marc, Naomi, Brother, Ryan and I'm the light line going across the photo!

This was our pride and joy. Brother did the "U", Ryan the "T" and state, me the "A" and Naomi the "H"

I tried a sego lily

Then I took a stab at night photography... I need some more practice...

 I really wanted to write a really long blog about all that I learned on this backpack trip, it was too overwhelming to reminisce in it all and I learned so much that it was tough to figure out how to write it all down. Maybe some day, but for know, just know that such beautiful rainbows only come after some really rough storms.

I am so thankful for all the fun things that this year has held for all of us as a family.

I'm glad I have pictures so that I can remember the great moments.