Saturday, May 10, 2014

"Are You Serious?" Awards - Volume XVII: Mother's Day Edition

So the story goes like this...

My son with severe hemophilia decides once again to avail himself of the opportunity to attend German immersion camp over 4 days this school year.  Being that the camp is a 9 hour ride by coach bus in one direction, and also given the fact that he is not completely proficient at administering his own IV infusions, I agree to join him as a chaperone. 

As we did last year, he and I spend time before the trip going through our checklist packing.  Part of his packing includes his infusion bag which contains enough of his clotting factor to cover a severe emergency, syringes, butterfly needles, alcohol swabs, gauze pads, bandages, a tourniquette, saline flushes, and hospital pads to provide the clean surface for set-up.  As I pack the snacks in the kitchen for the extremely long ride, I remind him that he needs an ample supply of extra needles, syringes, and the like.  He's a good boy, but he IS a teenager, after all.  He reassures me, as he packs the bag at the kitchen table, that everything I've just listed to him, he has covered.

Fast forward to the morning after we arrive at German camp.  He is due for an infusion.  By 8:30 AM we are in a private room where we can set up in time to have his infusion completed before the other 106 kids assemble in the Gasthaus for breakfast.  We slowly examine his hands and arms for which vein might be the best choice to use.  He's looking pretty bruised and swollen in a couple of spots, so our selection is limited.  As he takes off his sweatshirt and I begin to lay things out on the table a sudden reality hits us both like a brick wall -- He has forgotten to pack even one butterfly needle.  

Instantly, I descend into parental guilt.  Why didn't I double check his infusion bag before we left?  I'm so stupid!  What was I thinking?

At the same time, he is thinking the exact same thing about himself.

While feeling terrible angst over the fact that we literally are in the middle of nowhere without his necessary, lifesaving supplies, I am trying to calm myself.  Part of that process for me includes having to talk through my feelings out loud.  As some of the adults from other schools who are at the camp see me near the coffee pot with obvious worry on my face, they ask what is wrong.  One teacher hears me mention that he has forgotten to pack his butterfly needles for infusing and obviously mistakes me for another teacher exclaiming, "Does the boy not have a mother?  Would she not think to check such a thing before she sends him to camp?!"

 Are you SERIOUS?!

Um, yeah.  That would be ME you are talking about lady.

Perhaps therein lays part of the reason we moms raising kids with special needs are SO quick to swim in the sea of guilt.  People are so insanely quick to make judgments on us as parents.  And it always seems the loudest, most thoughtless, vocal ones are the ones who have never walked a mile in our shoes.  With the constant parade of critics, including-but-not-limited to relatives, teachers, neighbors, doctors, and complete strangers, it's hard for us as mothers to always repel the condemnation of others with a thick skin.

Yet, that is exactly what we need to do as mothers.  When others heap judgment on us, we need to remember that they don't know what they don't know.  Our journey is not their journey.  They don't see all the loving, informed, tireless care we pour into our children.  They aren't there in the middle of the night or at the hospitals or at the therapist or just comforting that discouraged child at home.

In my case, it didn't take long to realize my own reflexive guilt was nothing but foolish, because I was in the room with the boy when he packed.  I reminded him.  And when I called his treatment center to make emergency arrangements for needles to be delivered to us, they reminded me that he is at an age where he is transitioning.  HE should be the one calling the treatment center to make emergency plans.  Not me.  I have done my job as a good mother.

This Mother's Day, let's give ourselves the gift of a well-deserved pat on the back as we get off the guilt train.  Like no ordinary mother, we give that extra measure of care and attention.  It's about time that we push back against remarks like those of this week's "winner".

~ Barb Dittrich 

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