Image“Just because her eyes don’t tear doesn’t mean her heart doesn’t cry.  And just because she comes off strong, doesn’t mean there’s nothing wrong.”

My beautiful little Vic is not in a good place emotionally.  She feels that she has lost almost everything that is precious to her.  She has no future that is not encased in pain, loneliness and further loss.  Vic does not have a job to look forward to or even a shopping excursion.  There is no hope or prospect of a holiday…not even a visit to a spa, a manicure or a pedicure…. 

A good day is a day without vomiting too much, some time with the boys, maybe a visit from a sister or friend…

Imagine if that was all there was to your life? Imagine a life like Vic’s…

What goes through her mind?  Vic does not wallow in misery all the time.  She sleeps…Maybe it is not her body shutting down, maybe it is her mind shutting out her situation.

I sit here tonight and I am planning tomorrow.  I have to arrange for our oak tree to be pruned and treated, I have to approve a sighting system for the Middle East, inspect some armoured vehicles, organise flights for some staff to Saudi, pick the boys up after school, arrange Jared’s extra maths, sign up at a gym…  dentist appointment at 09:30 and take care of my beautiful, sick little girl.

Tomorrow morning Vic will have breakfast and then 39 tablets.  The boys will kiss her goodbye and Vic will sleep again.  Vic will wake up at 11:00, have coffee and tablets.  We will try and get her bathed before the boys get home.  Primrose will change her linen and clean her room whilst I am bathing and dressing her.   Vic will have lunch and fall asleep again…exhausted from the effort of bathing.  The boys may or may not find her awake when they come home.  Vic will wake up at 15:00 and chat with the boys for a couple of minutes.  She will have coffee and tablets.  She will sleep until dinner time… Take 39 tablets….. This is her life!  The only deviation is the vomit breaks…sometimes it is a couple of bouts a day and sometimes it is at night.  Sometimes it is during the day and the night…Extra baths to clean up and extra linen changes…

Her TV remains on 24/7 but I don’t know whether she has watched a complete program in months. 

Vic no longer reads, hopes or lives.  Vic no longer joins us in the TV lounge or for dinner.  She is too ill to get out of bed.

ger Vic very seldom cries anymore.  She is stoic in her lonely journey.

As parents we try not to wallow in the bad prognosis, but we need to be honest with what the prognosis means and the inevitable outcome. We have to accept reality.  We have to guide our family through this.  Help the boys to get through this as unscathed as humanly possible!  We also have to provide an environment that will be peaceful for Vic and allow her space to come to terms with her life.

The most difficult thing for the family  is however to tackle the problems of a very ill child rather than each other.

We love one another and support one another.  We will survive this ordeal as a family.  We are not perfect but who is?  We err in love.  But we love deeply and always and forever!