2020 has been nothing short of a dumpster fire of a year.  I kept joking that Biblical locusts were about to descend upon the world.  The joke was pretty funny until videos of locusts taking over the Middle East interrupted my nightly celebrity news on Page Six.  

But what if everything we experience in life has been for not a higher, but the absolute highest good?  

Every person reading this blog has experienced an event so painful that it is hard to see the silver living.  How in the world do you justify the loss of friend, a sick child or a senseless act of violence? Really, how can loss, pain and suffering be good?   Friedrich Nietzsche said, “That which does not kill us makes us stronger.”  I believe this to be true, but I also think most of us have no desire to be that strong.  So then, how could evil experiences be good? 

What if our struggles are our defining moment in life?  Struggles are things that define us.

I recently read a book written by Neil Donald Walsh named “Conversations with God.” One passage really struck me, “You cannot know what is until you know what is not.”  I realized that we cannot know honesty until we have experienced dishonesty.  We cannot understand love until we have experienced hate.  We cannot know light until we have experienced the dark.  This has become a stunning revelation for me as a parent of a child with a rare disease.  I now realize that only through comparison can I exercise discernment.  

Milestones for Maxwell Golf Tournament at the Fossil Trace Golf Club in Golden, CO.

SLC6A1 has become the ultimate dose of perspective in not just parenting but in life.  That is why finding a cure for this disease is so important to me and my family.  Rare disease doesn’t discriminate and you never know what the next moment will bring.   SLC6A1 needs to make us better not bitter.  New families facing this diagnosis will have hope and therapies (soon, fingers crossed!)  A gene therapy for SLC6A1 could save hundreds, if not thousands of families suffering the greatest heartache.  Maybe even someone you know.

The daily annoyances of “first world problems” do not provide angst as they once did.   My only wish every day is for healthy and happy children.  A successful day at the zoo is as gratifying as a vacation to Santorini.  My sister loves to laugh (about the fact) that I was once so put together,  I never had a hair out of place. I was always 10 minutes early and I expected perfection from myself.  The main staple of my diet is now is Cheerios eaten off the floor, or as I like to refer to them, Free Range Cheerios.  My sister also assures me – the joy these little humans radiates from me and channels into her life daily, I believe her.

Mark and I rarely have time for ourselves as a couple, but when we go out to dinner now, the food tastes twice as good.  Maxwell’s good days are reasons to celebrate.  Riley’s accomplishments make me burst with pride.  The bad days are really scary but remind me to set 5 minute goals to stop myself from projecting the future.

We all have our crosses to bear.  But if you look for the good, you may find that your journey becomes shorter, and your burden lighter.

SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.


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