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/