Giving ThanX

I’ve been “writing” this in my mind for a couple of weeks. My plan was to pluck it from my mind on Thanksgiving, put it into my blog and share it with the world. Then, life happened. Including probably one of my top 3 worst parenting moments followed by ringing ears and a massive headache leading me to bed by 6:30 pm.

Let’s be fair though, when I say “life happened” it means “Fragile X came out for a visit and won” robbing my sweet 18 year old son of his laughter and happiness and replacing the best of him with demonic yelling and full-fledged anger faster than early bird shoppers ransack a store on black Friday. If you want a blog on the ways living with fragile x can suck, I can likely write you a new one daily, on some days a new blog hourly. But… that’s not what I’m writing about today, nor is it what I want to write about or discuss – at least right now.

I want to share with you the reasons I’m thankful to have Fragile X in our lives. Yes. There are things I am thankful for. Every day.

Just like with everything in life, it’s easier to focus on the negative. “I don’t have enough money to pay my bills” versus “I’m thankful I have enough food in our cabinets to keep my children fed and the power on.”

It can be easy to look at my life and think “My son can’t adequately communicate with me.” Or “My 18 year old son still needs assistance in the bathroom.” Or “I wonder if that last meltdown left me with a concussion.”  Yet, it’s not that way at all. In fact, it’s the very opposite.

While I do not wish this life on anyone, I do appreciate every single inch stone along the way (think “Milestone” only smaller and celebrated in much bigger ways) and see the “perks” to the life we live. Most of all, I reflect daily on the amazing parts of each day and my life and realize  - even when  do not get it all right – I’m pretty darn lucky to live this life.

Because, Fragile X, in many ways has been a gift. And for that, I am thankful.

While the most obvious is my children who are truly the Rock Stars of my universe, there are is so much more!

For example, my very best friend in the entire world. If it were not for Fragile X, there would not be a Melissa and Holly (gasp) just take a minute to let that sink in! Some people go an entire lifetime without having someone they can trust with their entire life, who will lay in bed with a computer screen on facing them with Skype on so that they can be there to fall asleep with you on your most challenging days while you cry yourself to sleep because they live too far away to be there in person. Melissa is just that. She is my person. She is the one who has no trouble reminding me that I am only a superhero in our tattoos, not in person. That in person, I am human. I’m allowed to make mistakes, I’m allowed to say no, I’m allowed to stop and slow down and I’m allowed to be …human. (not as easy as you would think – and quite honestly, I doubt I would believe anyone other than her.) She’s the one I admire, the one I plan to grow old with and the one who I’d trust my children to. She’s the one I waited over 30 years to find. I am thankful, beyond meaningful words, for her. And her family, they are a package deal and I adore them all.

I am thankful for my close knit group of Fragile X moms who span the globe. You know who you are 😊 You are the ones who get late night emails, who know that pizza can be worth celebrating, who will try to fit yourself in a suitcase so we can be together. You are my sounding board, my mentors, and my reminder to believe in me. I am thankful for each of you.

I am thankful for this crazy family I had no idea I was a part of until 2003 – my Fragile X family, filled with the most amazing information, the occasional spike of drama and best of all unconditional acceptance and love. From IEP’s to Guardianship to Independent Living you are blazing new trails and pouring cement on the ones already paved. We celebrate together, laugh together, cry together and mourn together like only this specially bound family can, always offering unending support. We learn so much from each other and support each other in ways a family should, all thanks to one common gene mutation. I am thankful for all of you.

I am thankful to be a part of the Special Olympics family. Without Fragile X, I would not have known of this tremendous organization and the opportunities they provide. I’ve witnessed true sportsmanship, pure competition and the greatest support for every single person playing – plus gained my Special Olympics family. I am thankful for these experiences.

Because of Fragile X, I’ve been able to travel quite a bit throughout the US and even to Canada, sharing our Fragile X journey and empowering others. From our local schools and colleges to universities packed full for a lecture – I’ve been thankful to have the ability to make a positive impact on others by sharing a piece of each of us. I never knew I had this independence inside of me (me, the small-town girl who had never checked herself into a hotel, hailed a taxi or attempted to navigate public transportation can now do it all!) and I am thankful to have discovered it. I never knew how much I would love traveling and now can often be found daydreaming of places I’d love to visit. I am thankful for these opportunities where not only have I been able to help others but have also found strength and something new about myself.

I am thankful for the patience and negotiation skills that Fragile X has given me. While not always perfect, I certainly have come a long way – and for that I am thankful.

I am thankful for the humor that Fragile X brings out in my kids. From Parker’s slapstick humor to Allison’s sarcasm it truly is the greatest and keeps laughter front and center in our lives.

Of course, I am thankful for my family who love and support us. While I believe that goes without saying, it’s always better to say it. I am so very thankful for my family.

Fragile X has brought out the best in our community. From the incredible friends who surround my children to the business who support our fundraising to the people who are always here to learn more and do anything for my kids – I am thankful. You remind me on a regular basis of the very best our world has to offer and do so effortlessly. I am incredibly thankful for this amazing community and all who live here.

I am incredibly thankful to the teachers, para-pros, therapists, and all employees of our local school district who have put their hearts into making sure that my children have the most appropriate education – who have gone above and beyond and who remain a part of our lives today. Honestly, it started with the birth to three program and our educational/therapy family has only grown since those earliest of days. I am truly thankful for each of you, your dedication and commitment in professions that are always underappreciated. Each of you are the ones who deserve to make millions. Did I mention yet that I am thankful for each of you? Because I am. And without Fragile X, I would have never known of your amazingness – another reason to be thankful for it.

I am thankful for the extended family’s who have welcomed us in and consider us a part of their very own. Both Jen’s family and Dan’s family have welcomed our crazy Fragile x lives into theirs, embracing us as though it’s exactly where we belong… possibly because it is. You never looked twice or reconsidered, you just loved us, Fragile X and all – for each of you I am thankful.

Fragile X has made me who I am today. It’s hard not to be Thankful for that. Fragile X has not only brought 2 amazing children of my on into my life but thousands of others who I love dearly and have the privilege to watch grow up – all around the world, holding a special place in my heart for each family.

Fragile X has given me strength, knowledge and an incredible invitation into a world I did not know was there, filled with dedicated (and seriously awesome) professionals (who I am also thankful for), amazing families and the best self-advocates in the world.

Fragile X has taught me to be an advocate, provided me with patience and reasoning that extend beyond our home. It has provided more education than any school could into topics I did not know were even a part of anyone’s life while reminding me it’s ok to fail as long as I try again.

Fragile X has given me my voice and the ability to not only be the voice of others but to teach people how they can have a voice and make a positive difference too. That’s a pretty strong gift that I’m incredibly thankful for.

Yes, Fragile X has “taken” things from our lives that we will never get back and there are moments it’s easy to let that weigh me down – finding reasons to be Thankful for Fragile X are always there to make the day brighter.

#GivingThanX
#FragileX