'It's the Life in your years'

If there was one thing I learned in 2014, it was that tomorrow is never promised........ to any of us. So, I like to think I lived my life accordingly in 2015.

"For last year's words belong to last years language and next year's words await another voice. And to make an end is to make a beginning." ~ T.S. Elliot

   It is truly amazing the amount of things you can squeeze into the time frame of one year! This blog will be about reflecting on what happened throughout the year. I was blessed to be able to accompany my middle son on his very first plane ride, when he visited Washington D.C. to speak to members of congress about Fragile X and how it affects him, as a part of National Fragile X Advocacy Day. I got to reconnect with amazing friends, and he was able to meet so many new people. He also was able to see that in the Fragile X world, he is famous! We had some hiccups here at home about that trip, but they were worked out, and I was once again reminded that there will never be a battle I have to fight alone, thanks to amazing friends, family and my home and Fragile X Communities.
   We also had the amazing experience of hosting a foreign exchange student, and I am never sure what to call him when writing, he is much more than "exchange student". He enriched our lives, he taught us things about his culture, and things about ourselves, he is Giovanni.....he was our child for almost a year, a brother to my sons, and will forever be part of our family. We were able to be a part of his american high school experience, new sports, new friends, dances, prom, and earning his certificate of attendance at the high school Graduation ceremony. We also had to watch as he said goodbye, not only to us and our family, but also to the many friends he made while he was here.
   Shortly after Giovanni left to return to Brazil, we went on a family vacation to Arizona. We all 5 rode on an airplane (Rhevl's first flight). We stayed in Sedona for a couple days, my best friend from grade school met us there with her kids and for the first time in 6 years I was able to wrap my arms around her. All was well with the world. Plus, we were in Sedona.....if you've never been I highly recommend it. It is filled with such beauty and an overwhelming calming energy. We had to part ways with her and her family as we headed up to the Grand Canyon, with a stop off in Williams (a town COVERED in Route 66 paraphernalia). Again, the beauty of the Grand Canyon is something you must see in person, no picture will ever show how awe inspiring it is. **Sidenote.....I love the ocean, one thing I have always loved about it is how incredibly small it makes me feel. Like there is SO much more to the world than me, the Grand Canyon in all it's glory had the same astounding effect on me. We were able to see another friend in Flagstaff on our way back to the airport to return home.
   A week after our return I got to cross a 10 year old dream off my list, when I went with Rhett to participate in a Fragile X Study and walked into the UC Davis MIND institute in Sacramento. I will never be able to explain in words how extremely poignant that trip was or how emotionally overwhelming it was.
   We held our 2nd and 3rd 'Indian Taco Fundraiser' to help cover the costs for Rhein and Rhett to attend the International Fragile X Conference in San Antonio in Summer of 2016. We have had such a tremendous amount of support that we reached our initial goal and are hoping to find a way to offer a few scholarships to other self-advocates hoping to attend, as it is truly a life-changing experience.
   We tried something new this year when we embarked on a family vacation with my WHOLE family. My mom, dad, me, my husband, sisters, brother-in-law and all of our kids! We had an amazing 3 day vacation and tons of fun. We stayed in a big cabin, each adult or couple had their own room AND bathroom. We went out on the lake, went swimming, did some tubing, a couple people attempted skiing. We went to Silver Dollar City and lots of different go-cart tracks around Branson. Went to the Wax museum. IT is a tradition that I honestly hope we keep doing, even if it's every other year. Shoot, my sisters and I can even make a trip to Wal-Mart a fun time.
Finally, this fall, Jason and I got to go on a trip by ourselves! He was having a conference in San Francisco for his job. We flew out and a couple of our friends came out as well. He attended all his meetings and then we had a few days for vacation! We walked all over San Francisco, he and his best friend went to a 49ers game, while us ladies went on a winery tour in Sonoma Valley. We got to go to the Golden Gate Bridge, the state park, the piers, I got to visit China town and Little Italy, and we all got to tour Alcatraz. It was a fantastic time.

"And in the end, it's not the years in your life that count. It's the life in your years" ~ Abraham Lincoln

   There are many things sprinkled in between these big events: Rhevl got 1st place in his very first Pinewood Derby Race, Jason lost his grandmother in early spring, Rhein and Rhett were able to meet two amazing therapists at a local Fragile X Conference, I got a tattoo that I had been planning for years. Rhein and I traveled to South Carolina for our 3rd year of his study, Rhevl started actually singing with me while we perform with Rhett and Michelle at area churches and nursing homes, Rhett had a part in his Middle School Musical, We were able to go visit with Congresswoman Lynn Jenkins at her local office to discuss Fragile X with her, Rhevl played soccer and had Jason and Giovanni as his coaches,  Rhein was manager for the baseball team, and they let him bat during a game (he hit the ball and the crowd and home dug-out went CRAZY cheering for him), Rhevl finally learned to ride his bike without training wheels, I started blogging,   Rhevl started baseball (and was coached by his dad AND my dad), we had several Schlodder family get togethers at the family farm, I finally exited the mini-van driving club when we purchased a new vehicle this fall, Rhett ran for Student Council again this year and was voted in,  Rhevl played flag football for his first year, and loved it, we held the 3rd annual Holton Fragile X "satelitte" walk, and attended the Fragile X Walk in Kansas City, I lost a good friend on the anniversary of my grandmother's passing, the Holton Wildcat Football Team went all the way to state this year and handled the ice and freezing rain like champs, and somewhere along the way all the kids keep growing, and the two oldest have surpassed my dad in height.

Some of my favorite "selfies" from 2015......maybe I need a selfie stick......

   So......all in all we had a pretty great year! I look forward to seeing what this coming year brings, and I can't wait to share it all with you.......

I am going to decide to be happy this Christmas....

I have to stay busy this time of year, if I don't I reflect or think too much and it is pretty easy to go to a place of doom and gloom when it's gray skies all around outside. 

So, I stay busy doing things.....doing things that unfortunately make me remember, and make me feel that loss. You see, a lot of my childhood Christmas memories involve my Granny & Gramps. Granny loved Christmas, she loved to decorate, she loved to GIVE to people, she loved to make candy trays and stop in to visit with people. She loved to entertain and host parties or dinners, she would usually host at least 3 different things during December. She loved to play the holiday music on her console record player (and later her tape/CD player). 

This is one of my favorite pictures, Granny & Gramps
in that little window opening looking in on their guests
at Granny's Brother & Sister get together.

It all starts with setting up my Christmas decorations, I have half of my Granny's decorations, she would give me 2 or 3 every year. I have her old Christmas tree (the one we would decorate every year after Thanksgiving dinner). I use her cook book to make Christmas Candy and my favorite Christmas Cookies. I make her potato soup when we have our family Christmas. I sing in our church on Christmas Eve, with that still small hope, that she's just running late and will walk in at any minute. 

Oh, Christmas Eve.....this day is probably harder for me than actual Christmas Day.....when Rhein was about 3, we decided that we were done going to 6 different Christmas', so we would do our own Christmas and stop going to our 3 grandparents for the big family Christmas'. But, Granny was very persistent and she would not let us go, she needed help with this or that all through the week of Christmas. So, we decided after church on Christmas Eve we would just go to Granny and Gramps' house and help them get the leaves put in the table, set the table for dinner the next day and just help them get ready. Then we decided we would need to eat while we were there, so we ordered a pizza, and no meal is complete without dessert, so we needed a birthday cake for Jesus! If you had told me that first year that the little pre-celebration we had started would become my absolute favorite part of Christmas, I doubt I would have believed you. There was no stress, there was just us 5 and then us 6, after Rhett was born. 

But see, we started a tradition. Of course no one ever thinks they are starting a tradition, they just do it so many times and then it becomes expected, it becomes a tradition. So this Christmas I miss her, of course I do, and even though the hurt and loss is heavy......for the past couple weeks I have been remembering something Granny would tell me during one of the darkest times of my life (and honestly at the time it made me furious with her). "You just decide Christina, you just wake up every morning and decide to be happy". 

Well, I am here and I am trying to be happy, trying to keep my mind busy. Knowing full well, that the traditions she passed to me or started with me, will be passed to my children and hopefully theirs. I also know that she is with me....and though I might not see her walk through the doors of the church this evening, she will be there, just like she always was.

When "great love" becomes "deep grief".......

"Grief is the last act of love we have to give to those we loved. Where there is deep grief, there was great love" - Anonymous

***I have sat down to write this blog at least 30 times, and every single time I can't find the words. I want it to be perfect, I want it to convey my feelings, but most of all I want it to honor an amazing lady in my life. I'm terrified it will fall short of my expectations. But, I have to write it, it seems I can't think of anything else. I'm sure I will leave things out, I'm also sure I will write more than one blog about this amazing lady.

Almost a year ago, I lost my Granny.....my grandmother, my teacher, my life coach, my friend. She had 9 grandchildren, I am only one of them, she was many different things to all of us.....but all I can write about is what she was to me.
I was very lucky, as a child I lived just blocks from my grandparents. I could walk to their house, and did....often. At Granny's there were not many rules.....we could have unlimited amounts of candy, she made fabulous treats, and amazing food.

Most people know she was an amazing cook.....but I know the backstory; I know what happened when she first learned to make gravy, and when she doubted her cooking skills after getting married. I know she had to learn. I know because she taught me. While she taught me, she told stories. Looking back, I wish I had recorded them, I wish I had written them down. I wish I could remember more than just a few, but I didn't know how much I would long to remember them one day.....
And so here lies my problem......just like I could never remember ALL those stories, I could never put in to words ALL the things my Granny taught me. I know that at least once a day, I think "oh, I have to tell Granny this when I talk to her", and then I realize I won't talk to her and the pain hits me so hard I can barely breathe.

"Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim." - Vicki Harrison

You see, as a child...she was just my Granny. She baked and cooked, she taught me how to paint my nails, she listened to records with us and taught us how to tap dance in her kitchen. She taught us songs, by Brenda Lee and had us perform at her meetings. She let us play "beauty parlor" and "dress up". She liked to have fun, and always had a good time. I was probably 9 when I broke a cup out of her China cabinet....I was devastated, she wasn't; with that she taught me that people are more important than "things"... regardless, I did spend the rest of her life looking for a replacement cup, I told her once and she just laughed and laughed...."Christina, I don't care about that cup."
As an adult, she became my friend and confidant. I could call her about ANYTHING and if there was something she could do to help, she did.... we talked almost every day. I would go to her house to help her with things, and she would come to my house to help me. I cringe now, because there were days when I thought..."does she REALLY have to call me everyday?" ........Yes, she did have to, and now I would give anything for one more phone call. As she got older, it became obvious she needed a little more help. I would go and help her when she needed help; baking, rolling out dough, trip to the store, anything..... but, Thursday was our day: Beauty shop, groceries and sonic drinks.

She then moved into assisted living, with my Aunt....in Hiawatha. She always thought she'd just been there a couple weeks, but in reality she lived there for four years. When she first moved, I was lost. I was absolutely relieved that she was safe, but lost without her daily calls or drop in visits. But, we adjusted. Thursday was still our day, I would call her on Thursdays and we would talk and talk, just like she was still a few blocks away. We would go up to visit and after a while, it just became our new normal. As her memory got worse, those calls became more difficult, and again, I regret that sometimes I would skip a week.....just because I thought it was too hard.


"The reality is you will grieve forever, You will not 'get over' the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same again. Nor should you be the same, nor should you want to." ~ Elizabeth Kubler-Ross

There are SO many things throughout my day, that remind me of a "story" or fabulous memory. With every memory comes a wave of emotion. Since her passing, I have realized that for most of my life, I took her for granted. But, I also realize what a huge role she played in my life. She always loved me....even at my worst, she always wanted what was best for me, she always believed in me (usually more than I believed in myself), she was my biggest fan, she was my teacher of life lessons, she was my Granny, and she was my absolute best friend. So, now all I can do is try to be the person she believed I could be, so that when we do meet again.....I can have some amazing stories to tell her.

How our Fragile X Walk in Holton got started............

"Life begins at the end of your comfort zone" - Annonymous

I have told the story....many times. In the Fragile X world we have lived TWO lives....BEFORE the failed medical trial we did, we were not active in the Fragile X world. We would get some e-mails here and there, maybe send an e-mail, we joined the facebook page.....but we kept ourselves distant. I don't know why, there are a million excuses why. All that matters is AFTER....because AFTER we decided we would not go quietly, we had a community, we had a purpose, and it became our mission to spread awareness whenever we could.
In the Fall of 2013, our oldest son had just started his Freshman year, our middle son 6th grade, and our baby started Kindergarten. We were preparing to attend our very first Fragile X Walk, put on by the Kansas Fragile X Group in Kansas City. I shared information about it, asked people to join us, we all got registered. Then I got a phone call.

Drake with Rhein and Rhett at the first walk

One amazing kid (and his family) had come up with an idea. They couldn't get to KC for the walk, it's an hour and a half away, and they had ACT testing the same morning. So, his mom called me to see if we would mind if they had a walk in HOLTON to support Rhein and Rhett, we would call it a "satellite" walk and that way students, teachers, friends and family could show up and be part of our "team". My first concern was my oldest child.....he never really wanted people to know he had Fragile X, he didn't like to talk about it. But, he admired this boy, respected him, trusted him and he gave the okay.

"Those we meet can change us, sometimes so profoundly we are not the same afterwards." 
- Life of Pi

"Rhein & Rhett's Runners" Cheerleaders!

I will tell you, this made me incredibly nervous, (I have anxiety issues) I was terrified people wouldn't show up. The cheerleaders helped out and ALL the seniors on the football team. We made signs, the kids came up with a team name, they made announcements at school, sold t-shirts and we prepared. The day of the walk came, our amazing friends from KC brought their signs for us to use, and people started to show up.

"Rhett & Rhett's Runners" Senior Football Players from 2013

A lot of people showed up. The smiles on both of my boys' faces was amazing. You see, they are both amazing kids; they are friendly, honest and pure. They love with their whole hearts, but unfortunately sometimes they feel pretty alone. That day..... when students, coaches, teachers and friends started showing up.....they knew they were there for ONE reason, to show them they have support, they are not ever alone.
I have watched that realization of support change both of my children. They are both more confident in themselves. They believe in themselves, they are stronger.
This weekend will be our 3rd walk, that Senior boy has gone on to be a Marine, his cousin (a cheerleader) will graduate this year....but she has worked just as hard the last 2 years to help make it a success. We are lucky enough to live in a true community, filled with people that care, filled with people who "show up". Amazing people can do amazing things.

Attendee's from the first walk in 2013

"If only you could sense how important you are to the lives of those you meet; how important you can be to people you may never even dream of. There is something of yourself that you leave at every meeting with another person." - Mister Rogers

How I became a "football mom"

He was 3 years old when he started to live and breathe Holton Wildcat Football. Just a little boy, going to every home football game with his "Pa", loving every minute of it. My oldest child, my first baby, part of my soul.
I live and breathe to protect him, to keep him safe (as most mom's do). He kept attending all of those home games, becoming part of the "fan club" with his Pa,  he never lost his love for the game, or for his team and as soon as he was old enough, he started playing.
Flag football at first, with this worried mom. He would try and try, with so much heart you could feel it. Not really excelling at the sport, but loving every minute of it, lifting his team, encouraging them all to be their best.

In Middle School he started weights training, practices, two - a -days, team conditioning, commitment drill.....and in the fall of his 7th grade year, he put on his first "Holton Wildcats" football jersey. I know some people think it's "hard core", I know some think it is pushing them too far. I will tell you football, and my sons amazing team of athletes and coaches gives my son 6 months of the year that he feels "normal".
It's hard to watch sometimes, and I am TERRIFIED when they send him out on the field..... he never cares about playing time, or positions. He cares about his team, and being part of something. He cares that he is "one of the guys", he cares that he is included. He steps onto that football field and he is just another football player, he's not "different" or "special", he is a Wildcat.
I have cried at more football games than I ever thought possible. I have cried when they announce his name at the start of a game, or when I watch him get so worked up on the sidelines. I have cried when he gets sent into a game and the crowd stands up to cheer for him, and when I hear the announcers talk about his heart and LOVE of his team. I have cried when I watch boys on the field go out of their way to make sure he stays safe.

Tonight marks the start of the official "football season" here in Holton, with a football "scrimmage"....my son will be starting his Junior year as a Wildcat Football Player, they will announce his name as he runs out onto the field with the rest of his team. After the scrimmage, women (moms) will be allowed their one visit per year......into the football locker room, and we all go. We will look around at this team of boys that we have watched grow into men, and our hearts will swell with pride (I won't lie, I cry at this too)...not just for our own sons, but for all of them, for who this "team" that they all hold so dear is helping them to become. I'll tell you a secret though (not too much of a secret if you know me well).......I don't even like football! What I love is what football MEANS to my child, what "Wilcat Pride" does to his heart.
"Some people think football is a matter of life and death, I assure you, it's much more important than that." ~Bill Shankley

Nothing worth having is easy.......

August 12, 2000......a day filled with glitches, reminding us throughout the day that things aren't perfect, things can still go wrong. Marriage doesn't guarantee perfection and happiness, it just means we will face it all together. To fully appreciate this, you probably need some back story. Maybe one day I can share this entire story, but for now....a summary with some poignant lyrics from some of my favorite songs.

"I don't know, how I survived. In this cold and empty world for all my life. I only know, that I'm alive,

because you love me. When I recall what I've been through, there's some things that I wish I didn't do, but now I do the things I do, because you love me." - Jo Dee Messina (Because you loved me)

On my 18th birthday, I saw my husband for the first time. I told my friends I would marry him one day, they laughed, I didn't know his name and I know it sounds really corny (and hard to believe), but I knew somewhere deep in my soul that he and I belonged together. I have wondered, if given the chance to do it all again, knowing all the pain ahead if I would.........

Our road to marriage was very long, windy and bumpy....sometimes unsafe to travel. When we finally met (it was 4 months later) I had just graduated from high school, I was 18, he was 20 and we were both still trying to figure out life, growing up....and mostly doing a really bad job at it. We were on again off again, we were absolutely toxic for each other.....and in the middle of it all we had a baby and were trying to raise him, doing mostly a really bad job. We had no idea what we were doing, no idea how to be parents, no idea how to put someone else ahead of ourselves. We also had no idea how to communicate....we were kids, with a "you hurt me, I hurt you" kind of mentality. The bad was really bad, our choices were even worse, and it didn't get better (seriously...there was enough drama to create an entire Lifetime movie mini series). This exhausting and painful cycle went on for almost 2 years, then we called it quits.

(You know that's not the end......right?)

A few weeks after Rhein turned 1, I got a phone call.....and a huge "offer". Jason was in California, 29 Palms (the desert) and he was going to stay there, he wanted us (Rhein and me) to come out there, start over, try again. I was SO desperate to make this work, but very cautious. The last 4 months apart had been heartache and torture, but I had learned a little, and there would be rules. Get a job, get a house....then we will come. The next day he called and had found both, so we were moving 1400 miles away from the only place I had ever called home. We would start over. I was terrified, my family and friends were even more terrified for us. There was a lot of anger directed at us leaving, many people thought I had totally lost my mind, and I think some people thought they would never see me or my baby again.

"I've told a million lies, but now I tell a single truth, there's you in everything I do. Now, remember when I told you that's the last you'd see of me. Remember when I broke you down to tears. I know I took the path that you would never want for me, I gave you hell through all the years" 

~ Imagine Dragons (I bet my life)

Like I said before, we consistently made bad choices when we were together. I feel like California was our 40 days in the wilderness, our fork in the road........we could have chose to walk further into hell (I feel like we were there a lot of the time) or we could choose better, choose light, choose good......I know during that time there was a lot of prayers coming our way, prayers that we would make good choices, be better people, grow up, and of course be good parents, and probably prayers that we would turn to God, we did. In hindsight, moving to California was the best thing we could have ever done for ourselves. It was rough at times, it was certainly not easy. We were in a new place, we had only ourselves to depend on, and we had a baby to take care of. Sure, we still made some bad choices, but we figured it out, learned from each experience. We grew up. We also missed our families back home like crazy. So, one day, we just decided.....we were ready, we would go home. We packed up everything we owned into our car and drove the whole way back to Kansas. We stayed for a few weeks, but eventually ended up living in Iowa, a mid point for both our families, we still had some growing and learning to do. 

"I'm coming home, I'm coming home. Tell the world I'm coming home. LEt the rain wash away all the pain of yesterday, I know my kingdom awaits and they've forgiven my mistakes, I'm coming home, I'm coming home. Tell the world.....I'm coming home" Skylar Grey (I'm Coming Home)

Christmas Eve, 1999 after 2 1/2 years of this crazy relationship, Jason asked me to marry him, and I said yes, a million times yes. We have often joked about having gone through most everything that splits a couple up even before we were engaged, but it's true....we did, and we came out together. 

So, we moved back to my home town in the spring and the wedding planning was under way. Fast forward to that day......

First off, Jason forgot to pick Rhein up to take him to the tuxedo fitting with him and all the groomsmen. So, my mom was trying to decorate the wedding and reception with my small cousin and my child (who also happened to not have a change of clothes with him). We found some clothes for him, but I was busy trying to do all my own preparations, so he had to stay and "help" decorate. Jason got back to town, had to go three different places to find Rhein and then back home (where all the groomsmen, and ushers were getting ready). They had to get Rhein ready too. It was approximately 120 degrees outside with the heat index (maybe a tad less, but it felt REALLY hot in my big ole dress and I'm sure the men in tuxedos were as uncomfortable as possible). My mom was late, (remember she was slowed down with my child earlier in the day) so flowers were delivered without her being there. I got dressed before she got there. We started pictures before she got there! Oh yes, I didn't mention that while getting ready for the rehearsal dinner my dad, my mom and my soon to be husband all got into some poison ivy...and so, they were mostly covered, itching, and on strong medication. Now....I can see where most people would be nervous, or think these are all possible signs to call it off....but we are far from normal. I had some pretty awesome bridesmaids that helped keep me calm (a huge task, if you know me well), plus an incredibly handsome groom waiting, one that I knew would walk beside me through ANYTHING life threw our way.

"I guess the time was right for us to say, we'll take our time and live our lives together day by day. We'll make a wish and send it on a prayer, we know our dreams will all come true with love that we

can share. With you I 'll never wonder, will you be there for me? With you I'll never wonder, you're the right one for me? I finally found the love of a lifetime, the love to last my whole life though, I finally found the love of a lifetime, forever in my heart, I finally found the love of a lifetime." - Firehouse (Love of a Lifetime)

Jason and I watch our wedding video every year on our Anniversary, it's a tradition we started and I'm so glad we did. You know on that video, you don't see any of the problems or "glitches". It appears to be a nice breezy day. Sure, you see a 2 1/2 year old ring bearer throw his pillow down, and walk across the back of my dress....but mostly you see two people (REALLY YOUNG people) surrounded by their friends and family, people who knew all that we had been through, who had watched our journey unfold, people who knew we had faced our demons, people who supported us and loved us enough to show up that day (regardless of the inferno heat). That's the way life usually goes though. Everyone has a back story, everyone has trials (not the same trials, but trials all the same) they have faced, everyone has had to learn and grow and become who they were always meant to be. Usually no one sees those parts though, they are hidden, they are what makes us who we are.

Fifteen years....sometimes it seems like a lifetime. Sometimes I can't even remember life without my husband. Sometimes it feels like it was just yesterday we were walking down that aisle runner as husband and wife. My husband is my rock, he has seen me at my very worst, he has held me up and sometimes held me together as I crumble around him. Our life isn't perfect, we still have our ups and downs....But, back to my earlier question......if I could go back and do it all again, knowing the pain that lay ahead, would I? My answer is yes, every single time yes. Nothing in life worth having is easy....and my husband, my marriage, my family, my life, my journey.....they are all worth every bit of it.

"I'm strong because I know my weaknesses, I'm wise because I've been foolish. I laugh because I've known sadness" ~ Ziad Abdelnour

Happy Anniversary......"Where you go, I will go and where you stay, I will stay" 

The people you meet along the way........Thank You

July.....Fragile X Awareness month......12 years ago July was just another month of the year to me, I didn't know what Fragile X was, I had no idea how it would affect and change my life. Not just the surface, but the entire core of my being and beliefs.
As a carrier of the Fragile X gene, I am affected in many ways.......I have my own set of medical issues. I have social anxiety, I have panic attacks, I struggle daily with depression. I have begun the stages of menopause at age 34, It is possible that later in life I will develop FXTAS (Fragile X Associated Tremor/Ataxia Syndrome).

More importantly than any of those, I am a mom....first and always, to 3 amazing boys......they have changed my outlook on life more than I ever thought possible, they have made me a better and stronger person, and they have done all of that without ever meaning to. They have done it with just simply living life, being themselves.......they could teach us all a lesson.
Having children with a disability can really open your eyes to the character of the people around you. I have learned many things about people through the eyes of my children.

1. No matter where we go or what we are doing there will be at least one person openly staring at my child.....my tip for this? Make some "information" (asshole) cards. I carry mine with me at all times, and pass them out freely.....if you see me walking towards you with a card.....quit staring!
2. My children are amazing judges of character, if they don't like someone it is usually for good reason....they can tell who cares about them and who doesn't usually in one meeting, I wish I had that skill....it would have saved me a lot of heart ache.
3. They make friends for life, love with their whole hearts....and I mean it. If they like someone, if they know that person cares for them...it's forever.
4. They are fiercely loyal, and extremely empathetic. How you are feeling will affect them, and they will stick up for you if they feel like you have been hurt, even if you assure them it is all ok.
5. People are terrified of things they do not understand. Most adults will not ask questions because they have been taught it is not polite to......kids however aren't restrained by things like that, they are honest and if they have a question they will ask......you better answer.
6. #5 works both ways, as adults we are often times too "proud" to ask for help....I promise you, you need it and you will find plenty of it, if you only ask.

"Sometimes, it's not about the journey or the destination......but about the people you meet along the way" ~ Nishan Panwar

I want to tell you about our help, our support system and who............I think right out of the gate (after a diagnosis), the people in your life change. You learn very early on who is going to be with you for the duration. It hurts some. In our case we lost some people, in hindsight it's for the better, but at the time it hurts like heck to realize people are choosing to not be part of your life, to not know your children. The good news is, you are left with incredible people......and you will even pick up MORE along the way! People not afraid to learn, to support, to love; honestly, those are the people you want and need to be part of your children's life.

First and foremost, my husband.....

One day I will have to write a blog about my husband. I met my husband when I was 18, we were very different people then (some of you know that). We have been through most anything people can go through. Honestly, the first couple years of our relationship I don't believe either of us (or anyone who knew us) thought we would ever get married, (but we did, when I was 21) and most people, I'm sure, doubted we would stay married. It's not all been sunshine and rainbows, marriage is work.....lots of work. He is my rock, my support, my strength.

"All of my friends who think I'm blessed, they don't know my heads a mess. No they don't know who I really am, and they don't know what I've been through like you do.....I was made for you." (The Story)

Family......

just some of our amazing family!

we have an amazing family. My mom and dad, my 2 sisters, my brother-in-law, my mother-in-law, my wonderful Aunts, my late Uncle, and late grand parents, my amazing cousins. We don't always agree, some of us stayed in denial phase much longer than was necessary. The ones who have stuck it out, the ones who have learned, the ones who choose to be an active part of my childrens' lives, they are the ones to help us carry the load that sometimes seems much too heavy for the two of us, without them we wouldn't have a chance.  I need to mention in here that family is not always blood, my children have 2 "Aunts" that are not my blood sisters (but the sisters God forgot to give me) they are irreplaceable.....and 2 "Uncles", that are the best friends anyone could ever wish their husband to have.

Friends......I mentioned above 4 of our friends....but, like I said earlier, you pick up people along the way! The friends you make post-diagnosis are wonderful.....they are choosing to be your friend, they are choosing to be part of your life (despite your flaws) and they are choosing to love your kids. They are your "support", literally and figuratively. They might be local, they might be online. They are the people you share with, cry with. They are the people who know the day to day...the good the bad.....the times you want to give up, and they don't let you.....in fact, quite the opposite, they hold you together, they believe in you.

Community.......... I am lucky enough to live in the same small town I grew up in. We are a rural community in Kansas, we have approximately 4,000 people, we have 2 stop lights.......and I am always proud to say.......We ARE Holton.

Your opinion of your community may change a great deal when you have special children. People will surprise you, some bad......mostly good. The people who show their support will be teachers, school staff, parents of your childrens' classmates and friends, doctors, nurses. They will be the people who have met your children and have passed #2 above. They are people who will go out of their way to say hi to your child or give them a hug. These are the people who show you they care in a million small ways.

The people who stand up and cheer when your child runs onto the football field, the people who literally STOP a parade to come and hug your child, the people who show up to help with a fundraiser or create a walk in honor of your child, or show up to that walk, to show your child that they support them. These are the people who instill hope into your life....hope that life will be ok.

So, without this amazing help and support system we would all be lost. And so, it is to all of you that I want to say thank you. Thank you for being a part of our journey, thank you for loving my children, thank you for learning about Fragile X Syndrome. Thank you for reading my 31 facts about Fragile X throughout the month of July, and sharing some of them. Thank you for acknowledging Fragile X Awareness Day. Thank You for restoring my faith in humanity. Thank you for your support. Thank you for all the things you have taught me along the way.

"Alone we can do little; together we can do much" ~ Helen Keller

The front side of my "information" card

To learn more please visit https://fragilex.org/