The Surprise of Fear

Do the surprises ever stop? That's my burning question of the day!  Not just the medical jack in the box in the form of a little boy, but my own emotions and fears.  I know that I know that I KNOW I can't live in fear. The problem is I don't always know what form that fear will come in and when it will reach up out of a perfectly beautiful day and grab me by the neck!

We are currently enjoying spectacular, temperate days because of the approaching Fall season. Usually us Michiganders highly anticipate the harvesting of the myriad of fruits and veggies grown all around us.  Just today my kids and I rambled down the street a few miles in our teen-age Buick Terazza and purchased yet another ten pounds of fresh picked blueberries.  I washed them-- and washed them again-- and weighed them and bagged them for my morning protein shake.

I say usually because because, well, usually that is true.  But this year the transitional beauty  that comes out of the progression from Summer to Fall has been blurred by the sudden, intense struggle against fear--the fear of Winter.  Not because of the gloomy, doomy days and the wicked cold wind that seems to last forever, but because for the past four winters the season has been, well, hellish. Rhyse's compromised immune system seems to flat out fail.  He is  plagued with sicknesses, extra doctor visits, ER trips, and hospitalizations for pneumonia and croup, and both of us trying to survive through severe sleep deprivation.  No wonder this past week a cloud of fear got a hold of my brain and stuck there for several days.  We've had a mild summer with sicknesses, a constant struggle for weight gain--and failing--but overall for the very first summer of his life, he got to be something close to  a 'typical four year old', and he has LOVED it. And we have loved it.

It is Sunday night, the close of the week or the beginning of another--I never know which way it works! Either way,  I think I've got my brain back in line, and the fear conquered. But I also learned something this past week: after nearly five years I am still grieving the loss of typical.  Maybe for both of us. Not because I'm disappointed or ashamed or angry that he has a syndrome. But because something in me feels loss.  Period.

I don't understand why I feel such loss, such grief when he is here, he is alive, and I should just be thankful for life, for the best summer in five years.  But there you have it.  My emotions don't seem to cooperate with my logic!

Tonight my nine year old daughter crashed on her scooter and hurt her big toe, leaving a nasty, open wound.  After tucking her in bed with a fresh glob of antibiotic and medical tape applied I accidentally knelt down on that very toe! Nice job mom!  She screamed and the tears started and she jumped out of bed and said, "you can do it Maggey. You are strong, you can get through this pain, I know you can."  Nothing like a life lesson reminder from the mouth of your child!  Blink, blink!

I don't always like how the journey with a medically complex child changes me. I don't like the fear and the stress and the anxiety and the grief that we both go through.  But yes, I can get through this. A new day will dawn, and with it new strength from above.