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