I have a new saying this month, "May is Cray."  Because it is.  Like seriously cray.

I thought I was ready for it and then - boom - it got me.  And...it's PWS Awareness month.  The month that I intentionally fill your need feed with facts, thoughts and writing about our journey.  And life snuck up, and I haven't been posting or writing because of all the cray.  But it dawned on me...what a beautiful depiction of life with rare disease, and heck, parenting in general.  Things happen, curveballs are thrown...you regroup, revisit, and recharge.

So, I'm recharged and ready to revisit PWS awareness.

Our organization, FPWR, has put together incredible daily facts for families to disseminate.  And this one I felt was so important and so timely due to me feeling so crazy this month.  I took this survey, so I'm one of the 142.  And yes, PWS impacts many, I would argue, every aspect of our life in some way.  Sometimes it's subtle...what am I going to pack Ellie for lunch and snack every.single.day?  And sometimes it's in your face...as I watch my 6 year old try keep up with her peers running and playing, or as I hear her try to have a conversation with a peer about something, anything...and that peer walks away or looks at her confused because they can't hear her or understand her.  So, yes...there is burden.

But there is so much more.  I long for and pray for a day that the challenges of PWS be lifted from Ellie and all the other families who have loved ones with PWS.  But would I change our life?  Absolutely not.  Our life is exactly as it was intended and orchestrated to be.  It's hard, it's messy, it's complicated, and it's cray.  But isn't everyone's to some extent?  It's finding the beauty in all that cray that makes it so much more.  It's hearing Mac say, "We lud you Eddie" as we pull up to Ellie's school.  It's watching David chase the kids to their room, and all I hear is giggles and squeals.  It's seeing Ellie walk to the car at pick up and yell, "Bye Sawyer!"  And he yell back, "Bye Ellie Belle!"  And it's hearing Ellie say, "My friends had doughnuts and juice at our party today, and I had water and a Kind bar" and that's totally ok with her.

So it's so important to recognize that we as caregivers, need support and we're crucial when examining and looking at treatment options and avenues for our kiddos.  But it's also so important we make time for self care, and stop and find the beauty in all our cray...especially in the month of May