Today I Was Brave

“Hold her arm, Mom. Tighter please! Can you get her other hand too?”

My least favorite motherhood duty to date is physically restraining my child to force her to endure a procedure that everyone in the room knows will hurt.

I zoned out over breakfast a couple hours earlier. I knew the task was coming and the dread that caught in my throat wouldn’t allow me to swallow the rest of my oatmeal. Annie had no idea. She happily sang across the table from me and scooped more yogurt into her sweet mouth during lyrical lulls.

Yesterday’s INR check to ensure that Annie’s blood clotting time is slowed to a point that inhibits clots from forming inside her is an unwelcome routine for her medically-managed body. I know she’s tired of that routine.

Me and another nurse won the battle of Annie’s strong, stiff arm while the lab tech pumped then pierced her vein with the needle. She filled the vile with liquid red while Annie’s tears fell into my lap. Her protesting screams were heard down the hall into the waiting room. Once the nurse got the blood she needed, Annie chose two stickers. One said: No Tears Today. The other: Today I was brave. I smiled reassuringly and told Annie how well she did and how brave she was.

I hurried Annie out to the waiting room and placed her into Matt’s hands. I ran for the door, trying to get ahead of my family so that my back was to them before I broke the No Tears Today rule. I shuffled to the car with quick feet so two little girls couldn’t hear the sobs of a brave mom who felt weary of the medically-managed routine.

We’ve had two days of medical life since we moved to Philly 33 days ago for medical reasons.

The other 31 days have been filled with

finding new favorite restaurants,


playing babies in the living room,


swimming at the Y,


filling sand buckets at the Delaware shore,


snacking on train rides,


checking out a new school campus,

holding her own in a front yard wrestling match.

Those are the days that life is made of. Those are the moments we think on and look toward while we sit in cold sterile lab chairs together, wait on holter monitor results, and schedule follow up appointments.

On all those days, we celebrate every small victory. Like Annie’s encouraging report from her July cardiology visit.

Though being diagnosed with PLE during our inpatient stay in December/January, she is currently not exhibiting any symptoms. Even her blood work indicates that her PLE might be “not currently existent.” Her doctor admitted to being perplexed with the report. He said that it’s hard for CHOP doctors, who are the ones who have researched and determined that PLE does not in fact stop existing in a body once it has taken residence therein, to quantify that in Annie’s body the findings indicate that her PLE is gone. But he recommended that our family and the medical community at large can be encouraged that textbooks and research don’t know everything. Clinical presentation is king and right now its decree is stability and health for Annie. We’ll take it!

And we’ll enjoy the next 30 days that rest in between the next mother/nurse poke restraint battle.