My Spotlight!

As Brother would say, "You're in the club!" He says that when ever he meets some one new with Fragile X Syndrome. I love it.

A little bit ago I was encouraged by my cousin, Amber, to take part in a spotlight series that was happening on another blog written by a mom who has a child with special needs. I was excited to reach out and hopefully help get the word out about Fragile X Syndrome.

This Little Miggy Stayed Home is doing a wonderful service of helping to spotlight many sides of parenting special needs.

She posted my spotlight this morning and I would love if you would read it... that's my official blog post for the the day.

You really should go read it so you can learn a little bit about our Fragile X journey.

http://www.thislittlemiggy.com/2016/08/special-needs-spotlight-fragile-x.html

Quickly, the visit.

My brother and his family came to visit this summer!

My brother actually drove his wife and kids down from Illinois the weekend we had left on our California adventure so I missed seeing him that weekend. He brought his family to spend the summer with his wife's family while he worked.

I didn't get to see them as much as I would have liked because of volunteering at the kids' summer camp (which I still have to tell you about) and since Daniel wasn't here we planned on Tynelle and the kids being with her family more often.

At the end of July when Daniel flew out to be with his family I got to see him and visit him during that week he was here.

I didn't take as many pictures this time like I usually do, but the ones I got make me laugh so hard and perfectly describe the kind of fun we had when the kids and the rest of us gathered at my mom's.

Grandma Judy has the best dress-up closet ever and all the grandkids take full advantage of it.

A "true" cowgirl!

We had to get the side view so we could see the little tail...

TwinG was having so much fun that TwinB had to eventually join in!

Seeing that TwinG and TwinB were having so much fun, LilMan just had to join in on the show!

This pose kills me!!

She was a cowgirl princess

I tried to still go on hikes as often as my time would allow and Tynelle saw how much fun I was having and asked to join me next time I went. We hike a 1.5 mile section of the Bonneville Shoreline Trail and had a good workout.

I laughed so hard at this picture because I, obviously, forgot to utilize my photography skillZ to make me look thinner...
oh boy... still a good memory

The twins had their birthday while they were here. Daniel was bummed he wasn't there at this point but I made sure to send him all these pictures.

Sister loves her baby cousins and Leelee was showing her a little love back.

Most of the girl cousins at the party, only one missing is TwinG

Another thing we did while Daniel's family was here was had a little mini reunion, lunch with my Dad's side of the family.

It was so good to get together and talk and laugh and, of course, eat! It was fun meeting under grandma's big tree in the back yard where my uncle Jeff still lives.

We were all very excited about grandma's piano that would be getting passed on to our cousin, Ashley and her family so we all went in to look at it before the big move. To add to the nostalgia I asked Aaron to play a song on the piano.

It was so beautiful! I was amazed at how a piano that old, that has sat unplayed for that long still sounded so amazing! It almost brought tears to my eyes as I felt the presence of our grandmother beaming around us with joy to hear it played again and knowing that the family memories would live on in this musical instrument. (I get a little sentimental when it comes to family's belongings... if you couldn't already tell.)

It was awesome to have the great grandkids join in on the fun too.

Then there was the hike with Daniel and Tynelle that just added to all the great memories! I felt so special that I got to have them all to myself the better part of that morning.

But, my favorite part of the whole visit from Daniel was when he asked if I wanted to go on a bike ride with him at Mom's.

I loved it!

I felt like a kid with my brother again.

I miss him.

A lot.

I forget how much I love my family being around me all the time.

I really wish he was here, or at least, 6 hours closer...

Anyway, Ranger followed us on our bike ride and was getting interest from bigger dogs so Daniel decided to just carry him along on the ride! I laughed so hard!!

Ranger couldn't be happier.

The rear view was hilarious!

So, quickly, that was my brother's quick visit. Can't wait till next time!

The Napkin Note

 My dad had been sick for about a month before we left on our California vacation. I didn't worry too much about it because he was on meds and the doctor was watching him.

The Monday after we returned from our trip my mom called me that morning and informed me that she had taken dad to the Emergency Room earlier that morning and that he wasn't doing well.

This was a bit of a surprise because we all thought he was doing better and then he just seemed ... to crash.

Later that night I drove to the Provo hospital to visit my dad and bring snacks for my mom.

They had moved him up to the critical care unit because they were worried he was becoming septic and they wanted to observe him and make sure he was going to be OK.

They told us that his white blood count was really high, but as long as he seemed to be doing fine and not turning pale in face quite so much they would observe him for a few nights and hopefully avoid surgery.

(My dad will get after me for this picture... but he is also the one that instilled the importance of documenting my life...)

It was hard seeing my dad like that.

As far as I can remember I have NEVER seen him in the hospital unless it was to visit me or mom after one of our surgeries.

Until that moment, my dad was invincible to me.

He was Super Man.

I was pretty good at holding back the panicked tears I felt coming when I saw him lying in a hospital bed with no strength and no oomph.

But he still had a smile on his face.

I had a few minutes to talk with just him before my mom came back from a little errand and he kept talking about how much he loves my mom and how lucky he is to have met her and kept her in his life.

I felt, for a moment, that I was watching a Nicholas Sparks movie... it was that sweetly romantic.

As a kid I may have shuttered a bit hearing all the sappiness of my father about my mother, but as a wife and mother it was beautiful poetry and I could have listened to it all night.

I heard stories I hadn't heard before and I was amazed at the love he has for my mom, his wife.

He could write a book about how he fell in love with her.

I left late that night down-hearted about my dad being sick enough to be in the hospital overnight, yet inspired and uplifted by his love story.

I came back the next morning to be with my dad until my mom got there.

She had been up most of the night before she'd brought him to the ER and really needed her rest so I told her I would come be with Dad in the morning until she got there.

She informed me that she had written a note for him on a napkin that they had left on his dinner tray that he hadn't touched and I was to make sure he had gotten it.

When I got there, I'm not gonna lie,  my dad looked horrible. Pale, green, sunken eyes and sallow face... it was so hard to see. For a fleeting moment I prayed that God wasn't going to take my daddy away yet. It really scared me to see him like this.

He smiled a huge grin when he saw me walk in and he began telling me more stories of his life and experiences and I laughed with him.

I wish I would have recorded him talking, but I didn't think about any of this as I savored each word.

I told him about the napkin note my mom had left and you could see the sadness in his face that he had not seen it. While we talked he would pause every so often and searchingly say, "I wish I knew where that not was that your mother left."

My dad was doing well enough that they had decided to move him from the critical floor so we were gathering his things together so they could wheel his bed upstairs a few more floors. (I knew my mom wasn't going to be happy about this as she has an extreme fear of elevators... poor girl.)

As we were gathering things I noticed a napkin under his bed on the floor and picked it up.

It was my mom's napkin note!

I excitedly picked it up and showed it to my dad.

He was so delightfully happy that it almost looked like he would cry happy tears. He read it and got some pink into his face again.

I read it over his shoulder and had to take a picture so my mom could see that he got it:

My dad came home a couple days later only to go to the Emergency Room a week later. This was his 3rd ER visit in the last 4 weeks and this doctor finally decided to do surgery. The infection had not gotten better, worse even, and he decided that 3 months was a ridiculous amount of time to have had this infection going on.

My dad waited in the ER for emergency surgery.

I went to visit him and to bring snacks for my mom as he couldn't have anything because surgery would be starting that day—he wasn't really eating much anyway. That's one of the things that was so hard about seeing my dad so sick was losing so much weight so fast.

My dad seemed in good spirits for the most part and told me and mom stories of his childhood and bragged about his beautifully perfect wife. My mom blushed a lot during those moments.

It was interesting to see the love between my mom and dad, which I already thought was so strong, grow even stronger. It was palpable, the love they feel for each other.

Even through all the pain my dad was in, he was still very happy and talkative and all the nurses really got aa kick out of him.

I have to admit, that seeing my dad so sick and reminiscing so much about life and him saying over and over without regret how much he loves my mom, that I was starting to think I was in a Nicholas Sparks movie and that the hero in the story was going to die...

I was scared I was going to lose my dad.

For the first time in my life I realized how fragile my dad really is and that I have taken him for granted.

You never know when you could lose someone you love.

It scared me.

I think that's part of the reason it took me so long to blog about our California vacation because my mind was so consumed with hoping I wasn't going to lose my dad.

My daddy.

I didn't want to lose him.

I've always been grateful for my knowledge of an eternal family, but now it seemed even more important to me that ever.

I thought of my friends who have lost loved ones and don't have a testimony of eternal families and realized how blessed I am to know I would be with my dad again someday if this was, indeed, his time.

I thought back to the napkin note that my mom had left for my dad and how I would never forget that gesture and the importance of that small token to my dad.

I was grateful that my mom and dad love each other so much and felt so blessed to witness so many evidences of it.

The day he went in for surgery... 

My dad had a rough recovery after the surgery and even still, a month post-surgery, he is still a little more tired that usual, but it is good to see the color back in his face and have him be more present at our family gatherings.

I love my family.

I'm so thankful that I can have them for eternity.

I'm also grateful for napkin notes and I hope that this experience continues to inspire me and many others to take a moment to tell your loved ones how much they mean to you.