one year later

one year later

Written 7 hours ago by Heather Dalik

It has been a year.  A year since the mysterious dropping toys, unsteady walking, and the big bruise.  A year since the low grade fever and a year since day of crying.  Saturday is our diagnosis anniversary.  Assumed diagnosis only took a few hours and it was confirmed three days later.  It is really weird to relive some of the same activities of this week from a year ago, knowing now how fast life can change.  Yesterday, we went to the library for a magic show.  A year ago, we went from the same magic show to the pediatrician to Hopkins.  Yes, I cried at the magic show.

Toady at clinic, Nancy and I talked about what is next.  To many, our journey is over.  Besides short hair and a few scars, it is impossible to tell what Cora has been through.  I hear many times a day how amazing she looks.  Today, I was reminded our journey is far from over.  We are through the high risk time coming off the anti-rejection medicine.  Now, we enter the relapse high risk time.  Travel from one fear to another.  

When you see Cora out and about, she may or may not have her mask on depending on the environment (it is simply too hot to make her wear the mask outside).  Treat her like you would a newborn and please, don't touch her hands.  She longs to touch and hug people so don't panic when she hugs your child.  I have my hand sanitizer in my back pocket.  If you know your child isn't feeling well, ask them to steer clear of Cora at the playground or pool.  A simple cold could still turn into a hospitalization for Cora.  

To answer some of the questions that everyone is wondering - 

She won't go to school in the fall.  Preschool is too germy.

She might go to music class and a kids playgroup just for kids with cancer and weak immune systems.  

She will start having playdates - soon.

Food restriction still stand - no fast food or food that sits out.  No snowballs or soft icecream or anything that comes from a machine.  No leftovers.  Food must be sanitary.  As much as we would like to think it is okay, the bag of goldfish that has been in your pool bag all week, is filled with bacteria that could make her sick.  

Most of all - just ask.  Questions don't make me mad or upset me.  

Saturday we will celebrate the miracle of Cora's life and the bravery of her sister and brother.  At the swim meet, we will wear red ribbons as celebration of life.  Red is the awareness color for Aplastic Anemia. Dig out your Be CORAgeous t-shirt or wear red on Saturday and celebrate life with us.  

Be CORAgeous!