Tuesday, January 9, 2018


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.

I decided to take a peek at Facebook as a momentary diversion to see what my friends were doing. They had to be up to something better than I was, I told myself.  As I quickly glanced through the news feed, I came upon one of those memes that I typically scroll past, but this one caused me to pause….then to think and reflect.

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.

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