“Five hundred twenty-five thousand six hundred minutes"

“How do you measure a year in the life?”

I’m in planning mode for my son Reid’s first birthday party and it has caused me do some reflecting on the past year.  Wow – what a year this has been for us.  We have had some amazing highs – the birth of our second son, Reid, and we moved into our dream home!  But we’ve also had some crushing lows – the never even dare to think about because stuff this bad never happens to you or anyone you know type of lows.  We found out that both of our boys have Fragile X Syndrome.  You’ve probably never heard of it (we hadn’t either) but it’s pretty devastating.  It causes global developmental delays, severe intellectual disabilities and debilitating social and behavioral issues. It’s also genetically linked to autism.  

I still get a terrible pit in my stomach whenever I think back on the initial days when we first found out about Graham and the grim stats that we received over the phone from the neurologist.  I also recall with great sadness the hysterical crying fits over Google searches at 3AM.  I remember one of my searches was “positive stories for boys with Fragile X”.  There were no hits.  I could feel myself sinker deeper and deeper into despair.  The devastation that I felt for my firstborn was indescribable and in the back of my mind I kept thinking what if Reid tests positive as well?  What am I going to do?  How will I go on?  Then I just kept thinking that there was no way that something this terrible could happen to us again.  Reid had to be okay and that was that.  And then we found out that he wasn’t…

I’m still grieving.  Still grieving the loss of dreams.  Still grieving the lives we had planned for them.  And I’d be lying if I said I don’t look at them sometimes and wonder how much easier life would be for them if they didn’t have Fragile X.  But I also have a lot to be thankful for.  I am astounded at how courageous my husband is.  No matter what my latest worry is, he is always there with a positive response and a comforting hug.  He lets me break into a million pieces and then puts me back together again every…single…time.  And there have been a lot of times.  We also have quickly figured out who our tribe is.  The people we can count on and would be there for us in an instant, no matter what.  Whether it’s a shoulder to cry on or babysitting the kids so that we can go out on date night, these people are in our corner.  Having children with disabilities can leave you feeling so isolated, but having a good support system in place truly helps. 

Most importantly, I am thankful for these two little angels who have chosen me to be their momma.  They are so special and they inspire me to be the best mother I can be for them every single day.  They work so hard and take nothing for granted and watching them learn and grow has been so rewarding for me.  We have to work so hard for every milestone but it helps us to not take any victory for granted, no matter how small.  Every time I feel like I’m not sure how I’m going to find the courage to deal with this hand that we’ve been dealt, I just look at their smiling faces and all of my doubt washes away.  Their diagnosis has helped me to really focus on what matters in life.  It has reaffirmed for us that our hopes for Graham and Reid have not changed.  We want them to be happy, be well-loved and have purpose – Fragile X or no Fragile X.  And we will dedicate our lives to making sure of it. 

I don’t know what the future holds for us but I know that I am so lucky to be loved by these boys.  Our boys have the ability to love and be loved.  And the love that we have for each other will help us get through the hard times.

“Five hundred twenty five thousand six hundred minutes
Five hundred twenty five thousand moments so dear
Five hundred twenty five thousand six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty five thousand six hundred minutes
How do you measure a year in the life?

How about love?
How about love?
How about love?
Measure in love”