This is a quote I see often: “You often feel tired, not because you’ve done too much, but because you’ve done too little of what sparks a light in you.” (Alexander Den Heijer)

I understand how this quote pertains to people – probably many people I don’t even realize – in my life. But it doesn’t pertain to me.

Every day, I am lucky enough to be ultimately doing what sparks my light. Caring for my son is the greatest joy and best job I have ever held.

But I am tired.

To the bone.

Almost all the time.

It is because the work is hard. And never-ending. Often akin to caring for a newborn, because at 3 3/4 years old (yeah, in 3 months, I will have a 4 year old!) and 33 lbs (give or take), I am still his main source of mobility.  I am still deciphering what he is trying to communicate to me at all times.  These stages end years ago for neurotypical kids, but there is no end in sight for us.

It’s because the worrying is hard.  My brain is activated constantly, thinking about medical concerns and developmental concerns, but mostly about whether this trick or that therapy might finally be the thing that brings great progress.

It’s because the guilt is hard.  Our to-do list every day is longer than we could possibly ever accomplish in a 24 hour period.  We do our best.  There is never enough time to practice all the skills we should be practicing.  There is never enough time to enjoy all the life we have to be living.  I feel guilty when the balance swings one way or the other.

My light is sparked.  It’s lit.  It’s shining brightly and brilliantly.  I can honestly say I feel incredibly lucky, and there is nothing else I would rather fill my days with than being Kiran’s mom and primary caregiver.

But it’s hard.  And I’m tired.

To the bone.

Almost all the time.