Another Summer Day, Another Doctor

Summer was always my favorite season.  Summer represents freedom: time to explore, travel with family, be with friends, sleep, take new opportunities, learn new skills, share… Windows are thrown open to the summer breezes and to watch the lightning bugs dance, colors are more intense, night sounds are more musical…

Summer is something very different to me now.  It has become oppressive.  School is out and Riley is with me full time.  We close the windows and blinds against the heat that is so difficult for Riley to tolerate.  Driving out is only with necessity such as the medical appointments I have saved up for these no school days.This week took us to the Pulmonologist.  I do wish we could spend those two to three wait hours (three days according to Ronan) at home sometimes.  Why medical offices cannot schedule their patients at adequate time intervals is a mystery to me.  Ronan accompanied with a bag stuffed with reading and games to keep himself occupied; by now he knows how to prepare for a doctors’ office.

Once Doctor B. finally made it to our assigned exam room, things went quickly.  Riley is on a daily nebulizer schedule to maintain his lung health.  Just like the rest of him, those lungs are weak and need constant attention and care.  Riley’s lungs were clear.  Yay, no daily nebulizer for the next six months unless he is ill!  Such a relief to at least take away one medicine and one item from our daily routine.

The exam showed Riley to have no evident scoliosis, clear skin, swallow well, etc.  Dr. B. turned to me.  “He looks good.  He’s well cared for.”  I offered up a wry smile of thanks.  Then he continued more to himself, “You don’t see that much with these cases…”  No, it is not so easy to care for these challenging children.

Just last night, we were wondering if it really did take more than we had to give?  There is no choice for doing everything we can for Riley.  We dedicated ourselves once I was pregnant.  We brought him to this world and our agreement is to love and care for him above all else.  The loving is easy.  The caring is something else.  Many days I am frustrated with myself for not getting to everything I should do for him and I see John feeling the same.  Even this blog detracts from those precious moments needed for Riley’s well-being and health.  I am not sure how I feel about the doctors’ observation?  Glad that we have done so well.  Sad that Riley has a condition that is nearly impossible to maintain a quality of life.  Grief for the children who do fall through.  Anger at myself for letting Riley down so that this life is his lot.  Wondering how much longer we can possibly do this.

The brief comments gave recognition to the challenge we faced and how well we managed it.  It also brought highlighted all my fears and doubts.

Certainly, I have been questioned.  All special needs parents will face Challengers from outside.  But that is another post for another day.  I did walk away knowing that I have another medical professional who respected and recognized our achievements.

Get the door for the wheelchair Ronan.  Ronan, push the waiting room table out of the way please.  Ronan, get the elevator opened for us.  What’s next Riley?  Let’s brave the heat, get home and get you something to eat.

It is just another appointment.  Just another summer day.  Stacie

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