Tuesday, April 16, 2013


I was taking Jacob down the stairs the other day. It was time to start preparing dinner. The stair lift is slow moving. You have time to kiss Jacob's kissable cheeks many times, and slow down for a moment. As I was putting Jacob in his wheel chair and putting on his neck collar, I had this flashback to Jacob's first hospital stay. I had this vivid memory of a nurse taking my baby away swaddled in a hospital blanket to get a blood draw. I remember learning that Jacob was a hard stick, something most parents will never know if their child is or not. I remember hearing Jacob screaming and crying through the hospital walls all the way from the procedure room. The room that I was never offered to go with Jacob. As I got my baby back, still swaddled in a hospital blanket, Jacob fell asleep on my arm from pure exhaustion of fear and pain. My inner self was screaming to take me away from this situation of seeing my baby boy hurting and being afraid.

There are so many "not normal" things in Jacob's life that has become "normal" after seven years on this journey. We have been doing blood draws once or twice a week for the last 5 months from our home. Jacob is still a really hard stick, to the point that he is having a medi-port for blood draws and IV medications. These days we don't need a procedure room, our own nurse hero Gemma is poking Jacob in our home as Shakira is singing from the IPad. Jacob doesn't blink or cry as the thick medi-port needle enters his skin. A blood draw today doesn't face our boy the slightest. And the same is true for me. Now my worry is around Jacob's medi-port possibly clotting, so when I see the dark blood starting to fill up the syringe, I know we're good. I know every color of tubing for blood draws, and what specific labs go into each tubing. Having a plastic bag with blood labs in my purse has become normal. I have even considered to put the blood draws in my little bike bag and getting a bike ride out of delivering Jacob's labs. Blood draws are normal.

Scooping out poop of a diaper for a stool sample is normal, eye balling a diaper to know if it is a 500 cc diaper is normal, gaging Jacob's skin color to know if he needs some extra oxygen is normal, listening to Jacob's obstructive breathing to determine if he is needing a new position or deep suctioning is normal, reading Jacob's comfort level based on his heart rate, skin color, and alertness is normal, monitoring and treating seizures are normal. And the list could go on and on.

In the middle of our normal, I am happy that I had no clue that this would become my normal that day in the hospital seven years ago. Normal happens over time, normal happens with experience, normal happens with patience, and normal happens to all of us. It might just look a little bit different to all of us, but we all have a normal.

Love, Maria.

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