A New Normal

When we first embarked on this journey, we were operating in crisis mode.  With the help of God, family, friends, and church family, we managed to survive those first months.  If something was not about our immediate survival or the wellbeing or comfort of my children, I did not do it.  Only the most pressing matters were attended to and everything else was put off until later.  If I had not had so much help, I really do not know how we would have survived.  As I have said before, we were carried along on a tidal wave of love and support. 

A couple of people who KNEW told me to hang in there, that we would get to a new normal.  A new normal?  There was nothing happening that I WANTED to become normal.  I did not even want this new existence in the first place, and I certainly didn’t want it to become normal.  But one cannot survive forever in crisis mode.  Resilience eventually takes over.

When Derek got out of the hospital the second time, my parents, who had stayed for seven weeks, went home. While I still had a lot of help from friends, I was forced to figure out how to fit in some things I had put off or let my mom do for me.  Now some things were added to my must-do list.  I had to do my own laundry, prepare food, and clean up the resulting messes.  Daily or almost daily visits to the clinic took up massive amounts of time.  It was during this time that I began to figure out a routine even in the midst of constant change, never knowing how long something would take, or when we would have to go back to the hospital at a moment’s notice.  While I didn’t dare bring it to conscious thought, I was figuring out how to survive in my new reality.  I was reaching a new normal. 

I am no longer operating in crisis mode.  I am walking one step at a time, able to take what comes with what God provides for me.  He has supplied abundant help from friends and family.  Dear friends watch Kristen when she cannot be with me.  More friends and church family bring meals each day we are in the hospital.  Other friends and family support in other ways.  I still don’t know what I would do without them.  I am even learning to ask for help when I need it because I admit I can not survive this by myself.  It is all part of my new normal.

A couple of weeks ago, Kristen said, “Mommy, what did we do before we had to go to the clinic all the time?”  She has reached a new normal, too.  Most of the children we see regularly are also operating in our new normal as well.   Doesn’t everyone spend hours at clinics with unexpected or planned visits to the hospital?  Doesn’t every child make realistic Lego clinics, complete with procedure rooms, playrooms, and nurses’ desks?  What was life like before this?

Even Derek himself has reached a new normal.  He is so used to feeling as he is that he does not see himself as sick.  Friday, when he just had a cold, we received a sweet card in the mail from a child friend.  Inside, it said, “From ___, To Derek, Get well.”  Derek looked at me and said, “Get well?  From what?  My cold?”  Doesn’t every child take half a dozen medications morning and night? Isn’t every child sedated for lumbar punctures and bone marrow tests?  Doesn’t every child spend weeks in the hospital?  In his mind, he is not sick. This is normal.

Today marks five months since we began this journey.  God has been with us at every step and every turn. I am so thankful for the resilience He has put in the human spirit; the ability to survive, to keep walking one step at a time through unknown territory, the ability to reach a new normal.