Monday, July 23, 2012

Life is humbling.  There are experiences that make you grab it by the reins and beg for you to hold on.

Very recently, my family has been expected to raise that fabled bar and hang on for dear life.  In the wake of this unwanted turmoil, I have struggled to find peace.  Some days are much better than others.

I am more thankful today than I was yesterday, or to be honest, a week ago, or months ago, or even years ago.  Somehow, finding out "what was wrong" has freed me.  And it has forced me to search beyond my shallow self and put my soul out there.  To actually speak about what was wrong (or right) with my child and myself was not something I could have imagined doing. 

I was not always this way.  The night I found out about Trek, I was a mess.  A hot, blubbering mess. I felt hurt, disregarded, and unbelievably sad.  And, I was angry; really, really, really ANGRY!  How could this happen to me?  Didn't I already have enough to deal with?  My father had cancer, my brother's family was going through so much, and now this unforeseen blip on a gene had blindsided me. 

So, for a day, or two, or several, I walked in a haze of self-pity.  It honestly took everything I had to get out of bed, shower, go to work, and try and have a semblance of a life.  I was physically ill.  It hurt that bad

I thought if I repeated my mantra of, "I don't want to do this.  I don't want to do this. I don't want to do this," it would somehow go away.  I literally pinched myself just to be certain this nightmare was real.

But, I had support.  I distinctly recall, that first night, my husband, Doug, saying to me, "We cannot forget.  We cannot forget how bad this hurts.  Somewhere down the road, we will need to remember this to help someone else when they hurt like we do."  He was a man with a vision.  He knew what we had to do when all of the strength I could muster up was to stifle my cries in the dead of the night so I didn't wake him or our children. 

The first parts of that week are a blur.  I didn't eat.  I barely slept.  All I wanted to do was hold my family close.  I think I probably smothered them with enough hugs, kisses, and love to last a lifetime.  I trudged on, barely keeping pace with the world around me. 

The day we found out was Monday, March 26th.  The following Wednesday I was ready to share our news.  At the beginning of every staff meeting at my school, there is a time to share-celebrations and a-ha moments.  I waited until the end of that time, and feeling a little bit guilty for being a downer, I shared our news with those who had been on the journey with us.  I shared the news that my sweet, beautiful son, the one whom I had celebrated with pride when he hit his gross motor skills at "the end of the benchmark" and was elated when he began to babble at 20 months old, had fragile X.  It was one of the hardest moments of my life.  I barely had the wherewithal to get through it.  To utter the words out loud and to explain it was beyond heart wrenching.  I sat through that meeting without a clue as to what they were talking about.  The only place I wanted to be was home.  Home with my family, to shelter them from the whirlwind that our life was about to become. 

At the end of that week, I found a beacon.  I finally had enough courage to visit the fragile X sites.  God knows when I first googled this "monster" there was not a lot of hope out there for us.  Then I happened upon the National Fragile X site, and it was there I found Ashley.  A mother of a kiddo in Phoenix who knew exactly where I was coming from.  She gave me peace.  After talking to her, I slept for the first time in months.  I trusted her and what she was saying...that it was going to be okay.  It may not have been the life I envisioned, but it still had wonderful things in store for me and my family. 

Not long after that, I found Kathleen.  That beautiful soul I mentioned yesterday.  I think it was fate I happened to stumble (and stumble I did) upon her blog.  She put into words every single thing I felt.  She KNEW how wrenching it was to hear "those words" for the first time.  She KNEW how angry I was.  She KNEW that I felt broken, ashamed, and sorrowful.  She just KNEW. 

When I decided to reach out to these women, my life changed.  And unbeknowst to them, my family's life changed, too.  I became happier, more understanding, and loving.  I became a better mother, wife, friend, daughter, sister, and teacher.  THEY did that for me.  And, at the time, I had not even met them.

I have many families.  Those who share the same experiences of my childhood, those who were with me growing up, and all of those I've met along the way.  I also have a family of souls I only know because I am a carrier of fragile X and my son is affected by this gene I passed on.   They are my family who help us get through everyday life...speech therapists, physical therapists, occupational therapists, and play therapists.  They are doctors, specialists, geneticists, and pediatricians.  They are those fx families who bare their souls to help those of us who need a hand to hold and guide us on this very scary journey.  They are the children affected, like my son, and the brothers, sisters, fathers, grandparents, aunts, uncles, and cousins we love. 

To those who have not been on this journey, or one like ours, I'm sure it sounds surreal to say that I could not and would not imagine my life any other way.  That repeat of "threes" has given me love, and friendship, and support that just keeps repeating itself-day, after day, after day. 


  1. LOVE LOVE LOVE! Thank you. I've never said out loud I couldn't imagine my life any other way - somehow it seemed 'wrong' to me - his diagnosis is my blessing? But yet...everyday I feel it more. He was sent to change my life for the better. And he has. Much love to you sweet Sarah!

  2. I agree, Kathleen! I just saw your post, I must admit, I'm not good at checking the comments (I guess I need to get better about that.) I remember when we first found out about Trek. I sat there for hours looking at him and imagining him without his label and diagnosis, and then, it dawned on me, how could I picture him any other way? When I was picturing him differently, was I doing him a disservice? This is how he is, and he is MINE! No one could change him, even those who prayed for him to be "cured" (genetics must not have been their major), not me, not him, or anyone who loved either of us. But, I could fight for him, for all of us. I could learn as much about fx as I had the strength for each day (you know, some days are much more overwhelming than others and you just HAVE to put the literature down). And, that became my jumping off point. Scary as all get out, but I did it, and I have been rewarded. Having that monkey of "changing" him off of my back was one of the best things I ever did. Now, I'm free to love and cherish him as he is, as he was made, and how he will always be. Each night, when I put him to bed, I kiss his sweet little head and vow that Mommy will try her hardest to make it okay, and with a little help from my friends and family, I have no doubt WE will! I love you for bringing us on this journey with you. You are a Godsend. xoxo