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/

I am not stronger than you.........

"Unless someone like you cares a whole awful lot. Nothing is going to get better. It's not." ~ Dr. Suess

My baby was 3 years old when he was tested for Fragile X, his brother was 6. We had spent 4 years looking for some kind of reason for the delays we were seeing, to no avail. When FINALLY, one of our early intervention therapists handed me a book about Fragile X. Looking back I think she must have been terrified to present this idea to me, I would have been. But, I read the book, and she was right, my little boy met most of the physical characteristics......so we went to the doctor. When his test came back positive, "full mutation-mosaic", we breathed a sigh of relief (that lasted about a second). Finally, we knew what was causing the delays, but we also knew there was no way to "fix" it. That was the first real encounter I had with desperation.

Rhein and Rhett ages 5 and 2

As a parent, you want to find out what is wrong, what hurts, why...... and then fix it! Our older son was then tested (since it is genetic) and we found out that he too was positive "full mutation mosaic". The doctor was totally honest with us, he told us he knew almost nothing about Fragile X and sent us on to see a genetic counselor. This was 11 years ago, the internet wasn't brand new....but it was a little harder to find and access information. I remember my husband, myself and our 2 boys driving all the way to Kansas City to meet this genetic counselor. She walked into our room, pulled out 2 pages printed from the internet and began to READ THEM TO US! She could not answer any of our questions, I had already read every bit of information available.....I just wanted someone to HELP us! She did suggest that my entire family be tested, as I was the first grandchild on either side of my family to have children and extended family should be made aware of my carrier status. I was fuming mad the whole way home. I guess that is the first time I realized I would have to learn what treatments were out there myself.

Rhein and Rhett the month we got their test results

Then came the school.........before I start this section I just want to say that we have had some of the most caring, most amazing teachers. Those teachers will be our friends for a lifetime. (If my child runs across a room to give you a hug, or smiles ear to ear when he sees you, this section is NOT about you).But, on the flip side we have seen the very opposite of that spectrum......and I can never explain how frustrating it is entrusting your child's education to someone who doesn't "get it", doesn't want to take the time to learn, doesn't want to listen to you as a parent because after all, they are the ones with "proper" training. I'm here to tell you, if you want to see some parents acting CRAZY then please patronize them, make them feel like they obviously don't know their own child because you spend 5 hours a day with them and you read a website about their "condition". For people who don't have IEP's for your child....bless you, and I pray you never do. I pray you can live in the blissful reality that you will send your child to school and he/she will learn what they are supposed to, you have to check their bags, do some homework, and attend a conference twice a year to hear how well your child is progressing. Just so you can understand a different prospective, let me explain an IEP to you.

An IEP is an Individualized Education Program. The idea is that parents and teachers work together as a "team" to provide the child with the best possible education. It sounds GREAT.......I assure you it is not that simple. First of all teachers in special education are TOTALLY overworked, their classroom is filled up with 15-20 (sometimes more) children with special needs, and completely different learning styles. Sure they probably have an aid (para).......but what in the world can one or two paras do with 15 kids? Sure, they can help to shoulder the load. But, anyone who thinks that is a sufficient staff to truly give each child an individualized education.....has never stepped foot into a special education class room. In the beginning, I so badly wanted to believe in the system. I wanted to BREATHE...I wanted to send my child to school and trust that the staff was doing everything in their power to teach him what he needs to know to improve, advance and succeed. But, right out of the gate we were bombarded with things that he CAN'T do, not only can he NOT do these things, but after reading material I sent or looking up things on the internet, it was sometimes decided that he would NEVER be able to do these things. So, reading? Sure he goes over it in the classroom, but he will never be able to read so we will just work on singing the alphabet song. Writing? Well, this will be very difficult for him, but he won't need to learn it because he can type, we'll teach him to do that. If you want to see a mom go completely BALLISTIC then PLEASE tell her all the things her child can not and will not do. Better yet, if that mother has always had a rebellious personality, she will prove you wrong. So, school went on for him like that for a couple years....thank goodness we had an amazing speech pathologist who honestly kept me going and held me up through those first years.....she gave me the strength I needed to believe in myself and my child. Our lives would be completely different if we had not had her.I taught him to read during the summers between Kindergarten and First grade and then worked again between first and second. Finally in Second grade we had a new teacher for his resource room, and sure she can be stubborn and she's been in the field for a LONG time, but the difference? She listened, she learned, she respected us as parents. She asked the school to order the reading program we had been using at home, FINALLY school was what is was meant to be, he was progressing and thriving. I will tell you though, this entire process made my husband and I less than trusting, we were combative and defensive, we went to every IEP meeting guns blazing ready for a fight. We would finally get on the same page, and then there would be a school transition, or a new teacher.

Just an update on the outcome of this child who would never read, or write. He is now 17, has amazing teachers at the high school, has a drivers license, bought his own car with money he earned mowing lawns, he reads at about a 7th grade level, he has a job at the local newspaper and he has his own checking account, which he beautifully signs his name on every check he writes. 

What I learned here? NEVER let a diagnosis, or a synopsis of a diagnosis define your child.....he is so much more than that.

Now, luckily....because we had been down the path with our oldest, we never bought into the hype with our middle child. We demanded materials and programs for him...he has gotten the absolute best of the education system, simply because the trial and error part happened with his brother. 

I will only mention Middle School briefly......it is a hard time for every child, learning who they are, trying their best to fit in. I'm not so blind that I can't see it is a struggle for every student and every parent. All I will say about middle school (until my children are done with it and I can write a tell all) is, it gets better. Put your "guns" away, no one will even notice them. High school is just around the corner....my advice for Middle School.....get through it, that's it. Just suck it up, find the teachers who are willing to help you (they are there) and just know it gets better.

The best graphic I have ever seen to describe what
the "mosaic" part of our diagnosis means.
Thank you to fellow Fragile X mom, Lisa Lawrence for sharing.

High school......a fresh start, new teachers and wow.....people who honestly care what kind of an adult your child becomes. YAY!!!! The best IEP meetings we have ever had have been the 2 we have had in high school. Part of that might be because we have moved past the grief, the broken dreams, and the despair. We now realize, it is what it is......and where do we go from here?

Fragile X....oh yes, the gift that keeps on giving. I am so glad that we had our diagnosis fairly early, I am glad that technology has progressed and we can keep up with current treatments and strategies. I assure you, there is ALWAYS new information. I am most thankful for the support groups that we have, locally, regionally, nationally and internationally. 11 years ago I had no idea the journey we were starting, where it would take us. 

There are MANY quotes about strength....some of them make me uncomfortable. I am not stronger than you or anyone else....I am as strong as I need to be, for and because of my children. 

"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." ~ Elizabeth Edwards

July is Fragile X Awareness month, my blogs all month have been focused on Fragile X, our diagnosis and how it has affected our lives. Everyone's journey is different, this is just ours. If you would like to learn more about Fragile X please visit this link https://fragilex.org/........if you would like to donate to help families with this diagnosis find resources, treatments and support please visit https://www.crowdrise.com/KansasFragileXLEK15/fundraiser/christinamurphy

Fragile X.......how it changed me.

"Sometimes the things we can't change, end up changing us." ~ Anonymous

This month I have been sharing facts about Fragile X Syndrome, and most people who know me know that most of the time I really hate Fragile X. I want to focus on the positives, though I don't like to admit it, there have been many since we started our Fragile X Journey.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Kahlil Gibran


1. Fragile X changed me and my outlook on many things. Where I used to look at how things would affect ME, I now see how things affect my children. Where I used to lack self-confidence I now realize I must be confident to teach confidence. Where I used to be too proud to admit I needed help, I now realize I must ask.
2. Fragile X has allowed me to travel. I took my first plane ride when I was 31 years old (shocking I know). That trip was actually an Anniversary trip and had nothing to do with Fragile X (except for my anxiety). Since that first plane ride, I have boarded 28 airplanes....yes, in the past 5 years. I have been to South Carolina with my oldest son 3 times (we have one more trip next year). Jason and I were able to attend the International Fragile X Conference. My middle son and I attended Fragile X Advocacy Day in Washington D.C. and traveled to Sacramento to the MIND institute.
3. Fragile X has forced me to learn to do things on my own. It's not a big secret that I have extreme anxiety about certain situations. I met my husband when I was 18 years old, I had never been anywhere outside of a 60 mile radius of my hometown without either my parents or my husband, until I started traveling to studies with my children. I still remember that first trip on my own (with Rhein). It was going to be his first plane ride, I was going to have to navigate 2 airports, get us through security, through take-off, pick-up a rental car, and then drive ourselves 2 1/2 hours down an enormous (by my standards) highway to get to our destination in Columbia, SC.  This may seem silly to some people, but this is a whole list of anxiety ridden situations for me.....to top it all off, I have to control my own anxiety because both of my children feed off of my energy, so if I am anxious, they are more anxious.
4. Fragile X has made me a fantastic researcher.....Oh the things I have learned in the past 11 1/2 years. I have researched IEP's, behavior plans, modifications, learning styles, learning and behavior strategies. I have learned from other parents, educators, therapists, doctors, conferences, and online articles. I have tried to share what I learn, the learning is never done though, there is always a new article, or new technique, new medications, new ideas.
5. Fragile X has connected me with amazing people and lifelong friends. I will tell you a secret.....the mothers of children with Fragile X (the dad's too) are amazing, strong, inspirational people. In some ways I think our support group helps to hold us all up. On days that I feel like it's too much, I might see a note from another parent who has seen worse, or has amazing news to share and I think to myself......I can't give up, she didn't give up. Some of the best advice I have ever received has been from fellow Fragile X parents. I know for a fact there are days that I would not have made it through without the love and support of my Fragile X family. For years, I only knew most of these people online. I was able to meet a few here and there at local events or conferences, but when I went to the International Conference that all changed.....finally I could meet these women in person, who without even knowing it, have meant the world to me and seen me through some of my darkest times.
6. Fragile X has welcomed me into a world of acceptance, I'm sure it has happened before, where you meet someone and you instantly feel like you have known them for a lifetime. Like you don't have to explain anything, you can just be.....now, imagine that times 600. Yep, welcome to the International Fragile X Conference. I'm not sure how many people were in attendance at our first Conference in 2014, and sure not everyone agrees or instantly likes each other, but there is a total respect for one another. To walk into a room of "strangers" and NOT have social anxiety, simply because you know EVERYONE in the room has social anxiety.......is an amazing thing. After attending our first International Conference last year, I honestly can not imagine skipping one in the future. It is good for your mind, good for your soul. I made friends there that I can't imagine going a lifetime without knowing. I know this seems dramatic, it is.
So, for all the bad things that come along with Fragile X, there are a lot of good things as well. The diagnosis of Fragile X has changed my life, I will never be the same person that I was pre-diagnosis. But, that's ok, honestly............... I am a much better person because of it.

""But we are strong, each in our purpose and we are all more strong together" ~ Bram Stoker

Awareness Month.......Fragile What?

July is Fragile X Awareness month, my plan is to write a blog every week this month to share information and explain how Fragile X affects our lives.
For 9 years after our diagnosis, I lived in a bit of denial, I shared only the information that had to be shared. I researched, I tried to learn things, we went to doctors, we looked for education plans and strategies, I reached out to only a few other parents online.I have used this analogy MANY times, but it very much was like we lived on an island, some resources we had, but others we would never find on the island. I was fine...my family was fine.....my boys would be fine. It was a very lonely 9 years, my husband and I against the world. Going in to every situation like it was the battle of a lifetime. Scared that we were somehow failing, or that we should do more. In those years there were really only a select few people that we let onto our island, a very select number of teachers, a doctor, some friends, most were scared away by the choppy waters surrounding our island, but some found their way to land........ those very few people were the ones that we shared our struggles with. We were always defensive and on guard, it wasn't a great time.
Then something pretty amazing happened, my husband worked with a man whose wife knew another family with Fragile X (crazy small world), and so finally after YEARS of island living, we found out there were other people on the island.
We met our first Fragile X family in person, they will probably always have a special place in our hearts...because they showed us the world, they introduced us to a whole group of people....people like us, and more importantly they understood.
Shortly after meeting this family we started sharing more, still very cautious on how much. Both of the boys joined studies, our oldest ~ a language study in South Carolina and our middle son a drug study. We also attended our first local conference and finally met more families.Amazing things started happening, we suddenly had more resources than we ever dreamed possible. Our middle son was flourishing with his study, he had gone from paranoid, excluding himself to trying out for musicals and talent shows, he gave me the strength to do what I should have done many, many years ago......I was very nervous to ask, (I don't like rejection) but had learned from an amazing mom how she spoke to her childrens' classes and what a difference that made in their peer relationships.I contacted both schools; at the time, my middle son was in grade school, my oldest was in Middle School. The grade school was very receptive and supportive, the Middle School was not interested......so, I went to the grade school and spoke to his whole grade about Fragile X, I was so nervous, but it went extremely well, and I actually learned some things from them. Kids are smart, kids want to understand, and they want to help. Shortly after my talk at the school, my son participated in a school talent show, one I will never forget....for 2 reasons. 1. He was scared, very scared...walked onto the stage and then off again. Then something pretty amazing happened.......2 girls from his class went up on stage with him and stood by him, that's it.....they just stood by him, so he would sing. They gave him the strength and confidence to do his song, and it was one of the most amazing things I have witnessed in my lifetime, I will never forget it, or the girls that proved to me kindness can be found everywhere. 2. When I left the talent show, I got to my car and had a message from the coordinator of the drug study, they went bankrupt.....we had to stop taking the medicine. One of the best days of my life, suddenly turned to one of my worst.

Amazingly though, I didn't retreat back to my island. I can not possibly ever convey to you the pain that was involved in this whole process. The utter feeling of despair and helplessness. I had finally found something that seemed to be working amazingly for my child and now I had to take that away? It's a terrible thing, it can defeat you. Instead, our little Fragile X island fought, our families who lost the medicine banded together. A few of the moms started a website, we called people, we spoke to senators and representatives from our areas, we wrote letters and stories, a few of us even made it into a New York Times article about the loss of the medication. Fragile X moms (carriers) are nothing if not thorough, Sure, some might say we failed, we didn't get the medicine back......but what did happen was pretty awesome. We spread awareness, we opened people up to our world....we created a bridge to our island, people got to read our stories and feel our hearts breaking. If I had counted during that time how many people said "Fragile What?", I'm sure the count would be in the hundreds, and so I had a new goal.....one that will be a lifelong goal I'm sure, spread awareness, educate people.

Members of The Kansas Fragile X Group at Advocacy Day

After all of that, amazing things started happening everywhere, we joined our first Fragile X Virtual 5K, we had a float in our County Fair parade, we remained vocal. My oldest son started high school and found one amazing friend, and the support of many of his peers. As we were gearing up to attend our first walk in Kansas City, a big hearted high school senior and his family started a walk right here in our community. The night before our walk in town I had dreams that only 4-5 people showed up, I was so nervous and scared. I can't remember for sure, but I think around 85 people attended that first walk, a large part of them high school students. Instead of being scared, I cried (I do that a lot). I think mostly because all these years I was on this self made island, when there were people right here in our own community that love my kids and support their journey, it was an eye opener. So, anyone that knows me (or any carrier) knows that I don't do things half way......I'm an all in kind of gal. The National Fragile X Foundation and the Kansas Fragile X Group have helped our family take part in amazing things. Jason and I were able to attend our very first international Fragile X Conference last year, with a scholarship from both the National Fragile X group and the Kansas Fragile X Group (I will have a WHOLE blog about that this month), we have now been to a total of 3 conferences in Kansas City, my oldest has completed 3 years of his 4 year study, Rhett and I got to attend Fragile X Advocacy day in Washington D.C., again with financial help from the Kansas Fragile X group, and my middle son and I just started a new study through the MIND Institute in Sacramento. All of these studies and events would not be possible without donations to the National Fragile X Foundation and the Kansas Fragile X group.

Members of the Kansas Fragile X Group at International Conference 2014

This week I was contacted by 3 friends (who are teachers) they all contacted me to let me know that Fragile X had made the "new business" agenda at their National Representative Assembly and passed! I was so glad that it did, but more importantly I was glad that when those 3 people; who have never been my childrens' teachers, only one of them has ever met my children, when they saw "Fragile X" on their agenda, they thought of me, my boys and our family. That tells me that people are listening, they care.

Rhein and Rhett's Runner's (Team Holton) 2014

I really don't like to ask anyone for help (again, you know that if you know me), but I do participate in the Virtual 5k, to help spread awareness and raise money for a foundation that has helped my family and so many others, and we will once again this fall host a local walk to help to raise money for the Kansas Fragile X group. It's only twice a year that I ask people to donate to a wonderful cause, one that keeps all of us afloat. Please keep reding my daily "facts", share them with people, and please if you are able to donate even $1, follow this link. It helps more people than you will ever realize, it gives us all hope that moving forward a few more people will know about Fragile X, and one day no one will have to ask "Fragile What?".

https://www.crowdrise.com/KansasFragileXLEK15/fundraiser/christinamurphy