My mission: Spend an entire day free of Fragile X……
It’s a difficult one, but I am up for
the challenge. You may ask, “Why would
you want a day without Fragile X?” Well,
my response would be…because I can! No,
wait. Because I want to try. I am always up to a difficult challenge, and
this one I knew I could do!
My first task….be sure my cell has
notifications off so that I do not feel the urge to talk about Fragile X on
Facebook. I do this the night before. Second, choose a day when I
can be away from home for long periods of time (because being around “Fragile X”
is a default for me having 2 sons that HAVE Fragile X). I choose a Thursday when I have my once- a-month
book club with the lovely ladies that I enjoy…and subsequently, none of them
has children affected with Fragile X.
That’s a bonus. My plan is coming
together splendidly. I decide that I
will schedule a few appointments for this day, as well as lunch with a
non-Fragile X friend. Lovely. My evil plan is working.....
Thursday arrives. The day starts out tough. Joe (my youngest, age 21 years) wakes us up
as usual around 5:30 a.m. Oops…I forgot
about that one factor. Oh well….I will
ignore it. Anyone that knows us knows
that we follow a pretty structured routine, so this cannot possibly “count”. There is no way to avoid this (unless I want
to spend a night away…..hmmmmm, why didn’t I think of that before????). I reach over to the bedside table and turn my
cell on. Hey! It was instinct ok! This is what I do every single morning of
every single day! I can’t help it! We do run a business after all, so I do have
to be able to communicate. I hear a “BLING!” I check the phone. It’s a text from a friend. Ok…YES!
It’s a friend with a child that just happens to be affected by Fragile
X. What am I to do? Ignore it?
NO! I cannot plan this. This can’t count either. I must accomplish my mission!
I get myself ready for a day without
Fragile X. I shower, dress and put my
face on. I inform my husband that I will
not be home until 9:00 p.m. I get in the
car and head for my first appointment (it’s a fun one). I park the car at the Chiropractor’s office
and head in. Ooops, I forget the fact
that I have 3 “X” stickers and magnets plastered to the back of my car. Am I supposed to remove those for one day,
and then remember to put them back on????
NO WAY! It can’t count. Oh, and the personalized license plate on my
car is totally insignificant too. I
choose to ignore it. I enjoy my
adjustment and massage, and then head back to the car, being careful to ignore
the rear of the car. If I don’t see it
it doesn’t exist, right? So, I turn my
head deliberately as I pass by.
I head to my lunch with a good
friend. I haven’t seen her in months, so
I am quite excited! My life has been
filled with all things Fragile X so I have had little time to enjoy friendships
outside of “the bubble”. This thought
pops in my head, but I quickly dismiss it.
Ok. I didn’t say it out loud, so
it doesn’t count, right? Right. My friend has 2 grown boys that are doing
very well. They both work, but no
weddings, and no grandbabies. Her
business is thriving and she is well. She
asks about my life, and I naturally go into a whole schpeel about this conference
or that. I quickly stop myself, and then
fill her in on my “mission”. We decide
that it might be best to spend some time shopping together. Good idea!
Retail therapy is always a good cure for anything! We spend the rest of the afternoon chatting
about clothes, shoes, handbags, and other mindless things. It was fantastic! The hours zip by, and finally it is time to
say goodbye. We hug and we part. It’s time for me to head to my book club.
Again, I turn my head to avoid the
blatant exhibit of all things Fragile X on the rear-end of my car. I sit in the driver’s seat and check my
phone. Oops…a text from a dear friend
that has 2 kids with Fragile X. I CAN’T
IGNORE IT, OK! She’s a friend and I
offer my support when I can. We text
back and forth for a few minutes, then I start the car and head 45 minutes to
the book club. I feel a sense of comfort
and warmth from my day so far.
The group convenes at one of the member’s
homes. It is spacious and lovely with
lots of light and warmth. A welcome
sight for the entire group. The aromas
from the impending meal fill the air. I
can’t wait to taste it! We all sit and
chat about the latest news for each other’s lives. Some have young children, others are
Grandmothers. It’s a cohesive
group. Of course, one person asks me, “And,
how are the boys?”. I hesitate. I cannot possibly avoid talking about my
awesome boys when the situation arises.
I am never short on words when it comes to them. I don’t specifically mention the words “Fragile
X”, but everyone here knows my life. It
doesn’t count when it’s insinuated. I
have known these women for years, and they us.
The 3 hours pass very quickly and finally we must depart. I slowly make my way to the car, but since it’s
dark now, I don’t have to avoid the rear end.
I can’t see it anyway, so it doesn’t count. I make my way home with the music playing
softly, knowing that I have made it through another day.
Overall, it’s been a great day. I’m not sure if I truly accomplished my
mission of a day free of Fragile X. I
certainly tried. It took work to get it all scheduled and set aside work for a whole day. But, I realized that my
life is full of both Fragile X and non-Fragile X things and people. I have made some of the best friends through
my interaction with Fragile X, but I have maintained others that have nothing
to do with it. When my boys were young,
my life was 100% Fragile X and all things that it involved. It has evolved into a life with mixed
interests and opportunities, all full of challenges and joys. We have created a high quality life even with
Fragile X, and that in itself is the prize to me.
MISSION ACCOMPLISHED!!!!!
