It’s Fragile X Awareness Day! Do you KNOW what Fragile X is?? If you know me, my kids, or read my blog, I hope to hell you do by now. And today I am NOT ‘celebrating’ it, I am mourning it.
It has been a rough month for me. It all started a month ago, when Owen “graduated” from pre-school and I attended the little pre-k ceremony they have.
The pictures below are a great example of how people can use facebook to put forth a happy smiley face when all hell is breaking loose….
Omgoodness! Look at how adorable he is! Look at how much fun he is having! However this picture doesn’t include the total meltdown he had while I was there. He threw chairs, picked up and dumped out the trash, and used his aide as a punching bag, hitting and biting her. I sat with a fake smile on my face watching the adorable slide show, and I could feel everyone’s eyes on me, and I could see the pity in their eyes. Owen just couldn’t handle it. He couldn’t handle me being there, the change in routine, all the DIFFERENCES threw him off and he lost it. And that was my pre-k graduation. How was yours?
On Thursday he’ll be 5. He is still non-verbal. He still wears diapers. I still have to put him in the cart at the grocery store so he won’t take off. Our Ipad has been dropped down the stairs and thrown against the wall, part of the screen is shattered but it is held together by duct tape – because if I don’t have an ipad I don’t get to do ‘normal’ stuff like take him to a restaurant or Walmart. He’s on 3 different medications – Zoloft for anxiety, Tenex for ADHD symptoms, and Melatonin for sleep. This year he had an obsession with flushing things down the toilet – the plumber came no less than 4 times to unclog it. On Easter it started raining in my kitchen because he had flooded the bathroom above. He is over 60 pounds and at almost 5 years old, is wearing size 7 clothes. On his first day of summer school I had to physically put (wrestle) him into his van because the change of bus driver freaked him out and he refused to get in.
In September he’ll be transitioning to kindergarten. Not to Bridget’s school, but a continuation of the Applied Behavioral Analysis classroom where he is now, which is in a different town. New teachers, new aides, none of whom know anything about Fragile X. His classroom is for children with autism – and although many kids with Fragile X have an autism diagnosis, he does not. And during his preschool graduation it became very apparent to me that he isn’t like those kids either. I’m going into his new school to conduct a training on Fragile X in early August. More educating educators.
And the grief comes in waves. Bridget’s birthday in early July was very hard for me. Bittersweet. Because every milestone for her is the only ‘typical’ child milestone I will get to experience. Triggers for grief are everywhere, every day. Seeing another same age boy on the playground. Hearing parents talk about “Enjoy your children now, some day they will leave you!” Owen won’t. He will always need my care. Worrying about how he will be perceived and treated….as a child, as an adult, after I die…who will be responsible for his care…
I do a pretty good job hiding it, including from myself. I push it aside because I can’t live in the daily grief. It’s no way to live. And then, suddenly, my ass gets hit and pushed down by a wave and I.am.drowning. I think horrible thoughts. I think “I can’t do this. I can’t.” I think of suicide. I put Owen on the bus, I bring Bridget to camp, and I go back to bed. I sleep.
I confide in a few people. “I’m depressed. I feel shitty.” People look at me surprisingly – “WHY??” they ask. And I think yes, why? Aren’t I ‘over it’? Aren’t I ‘better’? Hasn’t my life improved a million times this past year? And I think no, kind of, and yes.
Having a child with a disability is a loss. It’s a loss of hopes and dreams for your child. A loss of normalcy. A loss of baseball games and Disney world and photos on the first day of kindergarten. Of college graduations and weddings and grandchildren. That loss NEVER GOES AWAY. We live with it. We put it aside, smile, move forward and live with it. And every so often, the wave of grief hits. And man, does that fucking wave hit hard. I’m always surprised when it hits me. Because like you think, I AM SUPPOSED TO BE OVER THIS. And I’m angry with myself for feeling weak and sad. I’m Irish. We are supposed to be tough non-emotional mother fuckers. I hate the wave of grief. It breaks me.
Last night, out of desperation I turned to the one place that has the people who ‘get it.’ Who truly understand….The Fragile X room on Facebook, where there is over 1600 members across the globe. And I posted this….
“OK. So I need a minute to bitch and have a pity party. Please excuse my complaining. And excessive use of ‘f’ word.
SO it’s Fragile X awareness day tomorrow. I AM FUCKING AWARE, OK!!???
I have had a miserable July. My (typical) daughter turned 8 and it threw me into a tailspin. Which I was SO surprised about although
a. I shouldn’t be, it’s normal.
b. In retrospect I have had a few (all) rough Julys since Owen’s diagnosis in 2010 (both kids’ birthdays in July).
c. He’s turning 5 this week, is still non-verbal, and is starting kindergarten.
And everyone around me is like “What is wrong with you?” Because, you know, I hide it well and don’t worry most of the time, and don’t talk about it, or complain. Because no one really wants to listen, they just want you to be “over it” and all better and back to your perky self again.
And when I actually decide to open my mouth and confide in people, they look at me SURPRISED! ‘What, you are still upset about THAT?’ And I think to myself, I KNOW RIGHT?!!?? I thought I was BETTER also! And I want to explain that thoughts of FX colors so much of my daily life – but I just shrug it off. But they.don’t.get.it. They don’t fucking get it.
Fucking grief sucks. I wish it came with a warning label. “Caution, contents of this person can explode at any time. And really, it’s not you. It’s the grief they keep hidden that occasionally combusts and kicks their ass. Do not take personally.”
K, thanks. I’m all better now. ;-)”
So far, the post has received over 60 comments. All from other parents saying “I hear you. I know this feeling. You are not alone.” My beautiful, gorgeous, unbelievable sweet friend Amy commented “lady, i love you. you are simply saying what we all feel at different times. Mostly, we ride the waves. We have a soundtrack for this freaking roller-coaster because we’ve been on it so many, many times. Then, out of nowhere ( or July) Fragile X comes and kicks us in the arse… and our hearts break again. and it takes TIME to move on- we never ‘get over it’… we carry it with us, sometimes in the back of our hearts, sometimes right in the very front. xoxoxo”
I love that – we carry it with us, sometimes in the back of our hearts, sometimes in the front. So true, so poignant.
And my heart, my soul sister Stacey wrote “You can’t “get over” a piece of your heart. O and. B make up the fabric of your soul. Some days it will stretch, some it will be crinkled into a ball and sadly some days it will tear. But you will always be able to repair it because of them. Love you lady!!!”
And thank you to EVERYONE who commented on that post. I would love to quote you all. Comments of support and love, lots of virtual hugs, comments of understanding.
And for one last stolen quote, this time from Cindi Rogers, I thank you, all my friendships born from Fragile X, for being the very best part of this journey. My local moms, my birches, my friends across the country and across the pond….thank you guys for ‘getting it.’ I will always need you, and I know you will always be there for me.
afragilelifexamined 
Wow! Thank you for sharing what so many of us feel! Loved it great job!
I LOVE YOU! ALWAYS!
Our journey is clearly not for wimps. There are times when we know small joys that are beyond comprehension for most, but then it happens…..a glimpse of hell. I lived that hell for many years before my son matured out of some of the crazy, brutal stuff. You hang in there and reach out for help every chance you get. Meantime, we can all be in this together and lay some sandbags down when one of our levees breaks.
As I look at the dried blood on my scratched-up arms, I tearfully read your words, and it’s as if you’ve read my mind. Thank you, Kathleen, for bravely sharing your thoughts and letting me know I’m not alone.
Lori
I am sitting here with tears pouring down my face, because these are my very own thoughts. My daughter just turned 10 last week. I hate July: all summer in fact. It is all the birthday parties, parades, concerts, ball games, and picnics that we never attend, and all the ones we are never invited to. I sometimes feel like I am under house arrest, for every outing is a huge ordeal to prepare for ‘the meltdown’, and I am exhausted.
And no body gets it. No one understands. well, almost no one ….. Thank you for your words. I know I am not alone.