I spent a lot of Tuesday feeling guilty about being pampered by my sister on Monday.  What a waste of time.  Yes, some bad things happened while I wasn’t home, but good things happened too.  That Tuesday, after many phone calls, and keeping my disabled son home from school sick, I finally got some good news towards the end of the day.  He had been approved for a new nebulizer, plus a hugely expensive medicine (two actually) along with vitamins designed for him, and it was all covered by insurance.  We have to wait until Friday for the new meds and the nebulizer but it was such a relief to hear he would be getting the care he needs.  Even if I AM the one who will have to deliver that care.  The drug companies are easy to demonize (and much of it is deserved – there must be a better way to spread out the cost of research than charging thousands of dollars a month for medicines to keep children healthy, out of the hospital and ALIVE)  In this case my son will have close to 30 minutes shaved off the time he spends with a mask on his face getting medicine aerosolized and into his lungs.  That’s a big deal when you’re 14, and have been getting nebulizer treatments most of your life. I’m not sure if it was his pulmonologist who pulled off the miracle, or if it was a company willing to fight for insurance payments (okay, I’m a bit cynical) but I DO know I’m glad.  It will benefit my son, and so it will benefit me and our family as a whole.

As we celebrated Valentine’s Day Tuesday night, I tried to explain to my other two children how much it hurts to have to do things for their brother that I know he hates, like respiratory treatments (he had already left the dinner table).  Having to do things that your child hates day after day  wears you down.  My husband tries to help as much as he can, and it isn’t easy for him physically.  Between the loss of his hip years ago from a bad surgery, and the rebuild of his lumbar spine required after decades of paralysis, he’s lost some of his trunk control, so it’s easy to fall out of his manual wheelchair when he leans over to put the mask on my son’s face.  He takes the chance anyway though, because he knows it helps me.  I didn’t get any flowers, chocolates or diamonds (after three lay-offs between the two of us in the past four years?).  Instead,  I got understanding for my frustrations, a celebratory partner in our son’s medical treatment, and someone who helps me at every opportunity to lighten my load.  Considering the depression and grief that can become paralyzing at times when my son has “had it” with all the treatments, medications, and limitations on his life, I couldn’t ask for a better Valentine.  Thanks honey.  True love is not something you can get from a card – it comes from someone caring enough to  help when things get hard, to listen when you feel like you’re losing your mind, and hold you as you cry when your children have had a bad day. (or if you haven’t been able to have a child you desperately want)

Perception colors everything.  I could have stayed in a state of guilt about having time with my sister and continued the “second arrow” the Buddha talks about.  I could have stayed mired in our son’s pain, and my own, or felt resentful about not getting a flowery Valentine’s card, a token gift, or something similar.  Instead, with gentle reminders from my husband, I was able to shift my perception and that makes all the difference in how you see AND how you receive things.  Try noticing the little things your loved ones do for you, instead of pining for the big flowery gestures that can just as easily be carried about by a disengaged philanderer as a mate who truly loves you.  A late Happy Valentines Day to all.  May you love yourself (which is a huge piece of work constantly in process for me) as much as you want to be loved by others;  and may your perception be colored by an openness to miracles (or just good things happening) rather than whatever your wounded self thinks you “deserve.”  Blessings, peace, and Namaste‘.

Published by janetlandis

I am a mother, a nurse, a caregiver and a writer.

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