I have five unfinished blogs on my desktop. Five! Each one started as a complex thought
with an ending in mind, but I could never complete the thought enough to
finish. Me. It’s like a profound mental
block preventing me from making that circular story fit together. Until
today. Today, I arrived at the reason
for my stumbling block, and it’s not a reason that I particularly want to
discuss…but I must.
They say grief is a process. Who knew it would last
this long?
When my oldest beautiful baby boy was two years old
and just diagnosed with fragile X syndrome I grieved all of the things that I
imagined he would not be able to do in school or with friends. I was certain
those thoughts were the most devastating things a Mom could ever experience. They
ripped my heart out, stomped on it and put it back in my chest to heal.
When our youngest was also diagnosed with fragile X
syndrome as an infant just a few months later, I again grieved the same things
for him. I also imagined as far as I
could what our life would look like with two sons with disabilities, although the
imagination can only take one so far. The grief was no less staggering and
debilitating.
The real reality stared me right in the face on a
daily basis with delayed milestones, an absence of any verbalization and
behaviors that reminded me of our designated fate. All I wished for was some
kind of affirmation that everything would be ok.
As years passed, I realized that all of those conjured
images were just thoughts, and that our sons could do things, and they could experience things, and we could have joy
as parents. We celebrated small moments of joy and “inch stones”, as my friend
Holly calls them. I exhaled a sigh of relief as we settled into some level of
normalcy. Of course, there were tough
times, no doubt, but we saw progress! This progress created little flickers of
light that kept me hanging on, hoping and striving for continued development.
We saw our sons graduate! We never thought that would happen, but we
made it happen. It didn’t look exactly
like their peers, but because it was so hard-fought, we were elated at the
achievement…and it was great.
Grief reared its ugly head now and then through the
years, but subsided shortly after, leaving me with my perpetual sunny outlook.
Year after year, my imagination could not transport
me far enough into the future to see our sons as adults. Those were unimaginable
thoughts that frankly scared the shit out of me. I couldn’t possibly formulate clear,
realistic thoughts about what their “job lives” would look like, but suffice it
to say that I don’t think I ever could have imagined it looking as good as it
does now.
My husband and I always dreamed our sons would have
a strong work ethic just the way we were raised, but that’s as far as my mind
could take it. I couldn’t fill in the specifics on what each of them would be
doing or how well they would do it. It
just wasn’t possible.
I am familiar with all of the phases of grief;
denial, anger, bargaining, depression and finally, acceptance. When the boys were little, I definitely
followed the path exactly as written. As
time passed, I found myself having little bouts of sadness or depression in
unexpected times, but again, I found my way out to land once again on acceptance. It felt like a game of hop-scotch; skipping
onto the block marked, “Acceptance”, only to be forced backward onto the
dreaded depression box when my turn came around.
It’s literally been years since I’ve played that
ole’ game of hop-scotch, but as I pass yet another birthday, I find myself
joining in the game once again. Something as minute as age can certainly do
that to a person…or perhaps it’s more than that. Other things have stirred those old feelings
up…joyous things like weddings and babies.
Our sons have had some of the most amazing friends
through their school years and subsequently into adulthood. My husband and I, and the boys, have watched
each one of them move on to college, jobs, and now, the normal path of
engagements, weddings and now, babies.
We are elated at their joy and success and we celebrate with them….but
at the same time, I look around and see our life not changing and I am once
again hopping backward.
This morning, my calendar glared at me with the
reminder that it was time to file the annual guardianship papers on one of the
boys—a task that I loathe, but at the same time, I am thankful to have as an
option. The forms beckoned me with questions like, “Who currently supervises
the Ward (my son) on a daily basis?” or “Please describe in details the current
mental condition of the ward.” On any
other given day I might just busily go about filling in the questions I am so
familiar with giving no regard to the emotional ramifications….but, today it
hit me hard. Another reminder of our path.
I needed a break from the paperwork so I dragged myself
into the shower, trying to take a deep breath and swallow away the lump in my
throat. I rotated the faucet and put my
face directly under the spray so that I could feel the hot rush of water run
over my head. It was peaceful and
soothing. I relished the solitude and
quiet. It gave me some time to gain
perspective on the feelings I was having.
I needed that. I find that perspective
is often my best teacher.
I finished getting myself together and returned to
my computer to finish the dreaded chore that continued to beckon my
attention. There is no delaying the
chore since a delay would mean receiving a “nasty gram” from the court system
stating that I was tardy in submitting the form, and I didn’t ever want to be
late. It’s something I loathe more than the task itself.
This was just the perspective I needed at that
moment. Mind you, I am keenly aware that
my life is full of blessings. I am constantly thankful that my sons have taught
me lessons that I would surely never have learned had it not been for their
disability. I have a Saint for a husband that puts up with my every whim or
mood or ridiculous desire. I am capable of many things and have many friends that
love me. Every person has one challenge or another and mine is no more difficult.
I am reminded that no life is perfect, but that it’s
our response to those challenges that makes us the person that we are. So, I will continue to do my part to make my
family’s life a series of experiences. I will strive to make memories to last
for whatever life we have left together. This shall be my path.
To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers
