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.