Thursday, March 13, 2014

I didn't choose this life...

I didn't choose this life.

At least I don't remember choosing it.

The life I thought I would have when I was younger, no where, even closely, resembles the life I have now.

People think I'm a leader.

I can't tell you how many people have approached me to sell this or that product, Avon, Mary Kay, Amway... anything you can think of.

I am not a leader nor a salesperson.

Neither one of those was my dream as a youth.

I wanted to be a well-known inspirational speaker for the youth of The Church of Jesus Christ of Latter-day Saints.

I wanted to be an actress in as many local plays as possible.

I wanted to make people smile and laugh.

I thought the world would end by the time I was 30... I never even thought what my life would be like at 37.

I planned on serving a mission at age 21 (the age has changed now to 19) for the LDS church.


I never thought that I would raise teenagers who weren't mine when I was only 25.

I certainly never heard of Fragile X Syndrome or ever thought that it would affect my life in any way possible.


Well, as you all know life is never what you planned it to be when you were 11 or even 18 years old. Life just comes at ya, and it comes at ya fast.


So when the leadership of the Fragile X Association of Utah just kind of fizzled out because of being in a different phase in life or moving out of state, I, as the volunteer graphic designer for the Association became, by default, THE leader of the Fragile X Association of Utah.

Leading a fledgling association has never, and I mean NEVER been on my bucket list.

I don't like leading anything.

I know, I know, people from high school may argue that, knowing that I was Sophomore Class President and Student Body Historian... but those were just fun leadership positions that gave me confidence to do the things I eventually wanted to do in life... inspire, uplift and enlighten.

So over the last, I think, for 4 or 5 years I have been trying to work up a new passion. A passion and desire to lead the FXAU to bring awareness to a syndrome that pretty much no one knows about yet 1 in 151 women are carriers, it is the leading known inherited single gene cause of Autism and I have 3 children with it, I have one nephew with it, one cousin, and two second cousins who have children with it. It's definitely in my family... I'm sure it affects many others.

But, I have to be honest. I don't like it. It's hard for me. I'm not like other moms I see out there who have multiple children with FXS and lead their local chapters as if it was second nature to them.

I'm not a good delegator, I'm not a good leader and I for sure am not good at trying to do that while trying to handle 3 children with FXS.

So, when it came time for National Fragile X Foundation's Advocacy Day I told my co-leader (and second cousin), "I don't want to go this time. I really think some one else needs to take advantage of the opportunity. I don't want to leave my kids again."

No one wanted to go.

At least no one replied when we put it out there.

Frankly, we only have 40 contacts on our list and half of them are my family...

I don't blame them.

It's hard work.

It's a time commitment.

It's a sacrifice of our time, our money and our obligations at home.

So, out of duty, I went.

Tiffany was awesome about going. She motivated me and really has the "oomph" I don't seem to have anymore.

So the week before we were to leave I got the news of my uncle passing away unexpectedly from an aneurysm. The funeral was to be 4 hours by car to St. George. My kids can NOT handle funerals, at all, so I knew I would be going on my own while Marc stayed back with the kids.

The viewing was on Friday and the funeral on Saturday so I knew I would just have Saturday night and Sunday to be with my family before I left again to DC. (I'll talk about the funeral in more detail in another post.)

Monday morning I sent the kids off to school and called our respite providers to make sure everything was good to go and then at 10 am I was off to Tiffany's to meet up and go to the airport.

Our flight was at 1:00 and all was well. We had been hearing about the 2300 flights that had been cancelled to fly into Washington DC but we weren't worried because we hadn't received any updates of our flight being cancelled or delayed.

We got to the Denver Airport just in time to use the bathroom and get a snack before our 4:00 flight to DC. We decided to check at the gate and make sure all was well... well, it wasn't. Instead of 4:00 our flight had been delayed 6 hours to leave at 9:57 that night...


So I am here on a trip I didn't want to leave my family for and now I am wasting time sitting around in an airport in Denver! What?!

Like I said, though, Tiffany was positive in the whole thing and she even had an uncle who lived 50 miles from Denver. She contacted him and he wanted to bring his family to see us at the airport and treat us to dinner! So, all we had to do was kill 2 hours and then we'd have something fun to do.

We watched "Penelope" on Netflix on my phone (I love Sprint's unlimited) because it's one I like and Tiffany had never seen it. We didn't get to quite finish it before it was time for us to be off to meet Tiffany's uncle and his family for dinner.

It was such a joy to meet him, his wife and his two lovely daughters. The hours we spent with them put a smile back in my heart and I felt that our flight had been delayed merely for the reason of being able to visit with them... and to try my patience.

Finally it was time to fly out. Tempers for many passengers were running high and the flight attendants were really good at just smiling through it.

It was a 5 hour flight and I couldn't sleep. Restless leg. Uggh. It's a curse. Anyway so I got to know one of the flight attendants really well as I stood by the bathrooms at the back of the plane as we talked and laughed and passed by the time.

During our conversation it came up that I was going to be celebrating my 18th wedding anniversary at the end of the week and the flight attendant looked like I could have pushed him over with a feather. He exclaimed two things, the first was a compliment I tried to take with a big laugh and smile, "You do not look old enough to have been married for 18 years!" Then he started talking about how impressed he was that I had been married to the same man for that long and all while having 3 children with FXS. He started talking about his family and I could just tell that he needed to hear a happy family can exist. It made me happy.

We got into DC at 3:30 am and Tiffany's other uncle who lives in Virginia was kind enough to be out in the cold (and I do mean cold) to get us at 4:00 in the morning.

Side note: Tiffany, you really have a great family!

Anyway, it was probably about 5 or 5:30 by the time we got to sleep.

We woke up at 10. So glad I got to sleep in.

Peggy, Tiffany's aunt, made us some omelets for breakfast and we were quickly in her van being escorted to our hotel for our Advocacy Day Training.

I was still tired.

I was still feeling a little miffed that I was leaving my family for Fragile X stuff again.

Then we entered the meeting room. We were late so it's not like we got to meet and greet. We just walked into a room with familiar faces that I have met over the last few years and felt a certain sort of comfort knowing that I was surrounded by "my people." My thoughts of sacrifice were soon changed to thoughts of excitement to see old friends and make new ones. I also took notice of all the self-advocates there were and how many children there were in the room.

I have to be honest, a lot of the stuff that was said in the training meeting I didn't hear because I was too tired to focus and too excited to be surrounded by people who understand what my life as a parent is like every day.

I was especially excited to see again, after 6 years, one of the people I hold dear and we have stayed in touch over Facebook. I met her at my first, and her first, Fragile X Conference. It was great to be able to give her a huge hug and just see her normal-sized instead of 1 inch by 1 inch on a computer screen!

Me and Kari during a break at the training meeting!

Then I got to meet my good friends Lou and Heather's daughter! She was there to advocate for her brother who has FXS. She was absolutely a doll and had the best Jersey accent just like her mom!

This was actually taken later at the Capitol building... I didn't have a chance to get one the first time I met her.

We had a great training meeting and was actually the best out of the 3 I have been to. We did a lot of roll playing and discussion that also gave the opportunity to get to know other parents better and hear more of our story.

After the meeting was over and Tiff and I quickly left with our luggage to check into our room and start getting things together and freshened up for the Community Support Network Leaders dinner.

Dinner was decent. The company was awesome! My spirits, by this time, were a little more on the bright side, especially because we had walked as a large group from our hotel .8 miles to the restaurant. We had plenty of time to chatter and exercise a bit before stuffing ourselves silly.

We learned more about our leadership roles and what other states are doing in their groups and my heart sunk a little. Utah had nothing to say for themselves. I don't even want to think about the Parade of Pumpkins right now... I don't even know if I can motivate myself to do it again (that's another story for later).

But, then we were quickly back to laughing talking and making new friends. I met and got to know 2 dad's that are parents of a child with FXS and a dad that is a carrier of FXS. Love their commitment and their drive to bring about awareness.

It was late when Tiffany and I got back to our hotel room and we still had to put together the packets to take to our senators and congressman. During this time I started feeling a twinge of guilt again, thinking that if I had been a better leader that we would have more pictures and letters to represent our state. There were 2 congressmen we didn't even get meetings with because we had no representation for those areas soon enough to get the appointments. So as the wee hours were coming I started wondering, why am I the leader of this organization. I didn't choose this--it fell into my lap. I'm not one to just drop everything and let it crumble, but maybe even with my trying, it was crumbling anyway.

And then I woke up after 2 and a half hours of sleep to be ready, have our bags packed and waiting in the lobby for our 6 am bus ride to the capitol.

Have no idea what face I am making there... but I like my lipstick... hee hee!

There came that excitement again.

The rush of 3 bus-loads, 170 of us all fighting for the same thing!

It's exhilarating!

We went from riding together on the bus, getting pictures on the capitol steps, touring the capitol and house floor and then we hit the ground running to talk to our Congressman and Senators and tell them all about Fragile X and how it could be the path to understanding Autism.

I'm in the middle-ish about 4 row up from the "n"

Some of the ladies that I feel I got to know much better... not necessarily because we know each other's favorite colors and all, but just sweet moms who "get" it and are happy.

Tiff and I had to take the opportunity to get photos with a couple of the "stars" of our  Fragile X world, Holly and Amy... I just had to get a "selfie" of us because, well, it was just funner that way...

Tiff and I on the steps of the capitol... and yes I was really tired so aren't a entitled to having bags under my eyes... and chin... Yeesh! Anyway had to put it up for memory's sake.

Me and Tiff with Brigham Young in Statuary Hall.

Me and Rosa Parks (hers is one of the newer statues there)

With Greg Harper, Congressman of Mississippi (and father of a son with FXS) who gave us the House Floor tour and walked us through the capitol. This pic was actually taken out on the Speaker's Balcony!

 Just me and Tiff being me and Tiff!

It was amazing!

I can't even begin to explain the strong spirit and excitement that I felt with each meeting and truly felt that most were very excited to help out FXS in any way they can!

It was even awesome to talk to Senator Hatch's staff member about Fragile X and watch his face light up with realization that his nephew may have Fragile X and not Autism like they had been diagnosed. It's moments like those that you think, "Even if all I did was help one child get the correct diagnosis, I've done enough!"

We even got in an unscheduled meeting with one of the congressmen that we didn't have an appointment with. We just dropped in and asked and it all worked out.

One of the most memorable was talking to Congressman Matheson and seeing his excitement when he recognized us from last year and was so excited to tell us that he remembers what FXS is and told us all about it. He was so excited about the things we asked that you could just feel a genuine desire to help our cause. That was our last meeting and a great way to end the day. I couldn't just let it end with a simple thank you, good by and a posed picture from the staff, so I asked Congressman Matheson if he would be willing to take a "selfie" with Tiffany and me. The look on his face at the moment of my request was priceless and he answered, "Well, I have taken my own selfies a few times... sure!" I told him I didn't want him to forget us so I wanted an original picture. The staff thought it was so great that they had to take a picture of us taking our picture.


staff shot of our "selfie"
Tiffany and I laughed the while walking for 4 blocks to meet her uncle picking us up to take us back home. We were so tired from all the walking and the mental drain of trying to act smart and engaging for the entire day. We felt like zombies.

We got back to Peggy and Ken's house and Peggy had lasagna and corn bread waiting for us. We got home about 7, ate about 7:30 and I wandered back into the bedroom Tiffany and I were staying in and I was out. Completely out!

I had worn out every aspect of my being.

I think mourning the loss of my uncle, the guilt of not leading an association the way it should be, along with the guilt of leaving my family again, been brain drained by the training and then physically, emotionally and intellectually giving all that we had that day took it's toll on me and I fell to the bed like a log and stayed there.

I'm still recovering.

But, it was so worth it!

I know we made a difference on The Hill that day.

I know that God was supporting us through every word we spoke and every step we took.

I know that I love being able to make a difference for this affected by Fragile X.

I also know that leadership is a tough thing for me.

I don't know how much longer I can do it.


This is not a resignation, but an admittance to knowing I can't do it all even though it would be awesome if I could.

Funny thing is, his is not the life I chose... but, I am still accomplishing the things I wanted to do ultimately:
-Inspiring (because I'm still standing and functioning even though all 3 of my kids have FXS)
-Making people laugh (because what isn't funny about raising 3 children with FXS)
-Acting (because I really don't think too many people knew how tired and miserable I was while there)
-I'm serving a mission in Fragile X Syndrome Awareness
-And I made it past 30!

2 remarks:

robin said...

Thanks for sharing. I have so many of your same feelings. I didn't get to go this year to Washington, and I missed seeing everyone. I met you there last year! Thanks for making the trip and making a difference! Sorry about the death of your uncle.

vickit43 said...

Thank you for sharing your story. I can not see myself ever getting to do this. I appreciate women like you that puts her family first but also takes time away from her family to advocate for what she feels will benefit her family and others.