7 Today!

As we’ve been helplessly watching our daughter deteriorate year after year, month by month and – more recently – week by week, I could feel nothing but desperation on her birthday last week.  I stared at my Facebook reminders of previous birthdays as I felt a sick feeling in my stomach.  It all felt surreal …

Holding onto Hope

Once again festive plans could not be further from our mind as we approach Christmas. Even a simple drive with my daughter to see the Christmas streetlights ended badly and I wondered in that moment whether there might ever come a day when life could look different. The past year has felt like an eternity …

When it’s HIDDEN

It’s been two years since we ‘lost’ our little girl.  The memories still haunt me.  And we live with the devastating impact of it every single day (read about this in my blog post Christmas). I’ve been wondering recently, had she had a serious physical condition of her brain, like cancer, whether there might have …

A Bitter Pill to Swallow

  This week we gave the go ahead for our daughter to be medicated. I had sat the week before watching the psychiatrist write the prescription, and I felt a wave of panic sweep through me. ‘Stop’ I said.  ‘Can we think about it?’ I knew deep down that there was no other way.  I …

Making Sense of it All

We found another very important cog in the wheel last week.  A subordinate yet integral part of this giant jigsaw puzzle we are struggling to piece together. Our daughter had an Occupational Therapy Assessment in a purpose-built centre she had entirely to herself.  The therapist was taken by surprise as our angelic-faced girl hit the …

Birthday Wishes

  Yay! Happy Birthday me.  The birthday messages have come rolling in.  Have a fab day! A lovely day! A fantastic day! It’s always a good thing to be remembered and encouraged on my birthday.  I really appreciate it.  But, in reality, birthdays tend to go unnoticed in our house, and it has felt no …

The BROKEN System

The New Year brought with it another diagnosis – Pathological Demand Avoidance (PDA).  I vividly remember the sinking feeling following the phone call from our daughter’s paediatrician during the first week in January.  Although it felt inevitable it still came as a shock to me – less so my husband. PDA is a relatively new …

Christmas

We've had some interesting, and quite frankly horrible, Christmases since our daughter was born.  Her first Christmas was spent in hospital.  She was tormented.  We were tormented.  Not exactly the Christmas we had hoped for (Read about this and where our journey started here). At just turned two our daughter was with us when we …

Such Gratitude

The final post in my series about living with uncontrolled Infant Acid Reflux (Read my first post Stolen Joy to find out about the condition, how it developed and where our journey began). Following endless trips to the GP, battles with the pharmacy, blood tests and hospital admissions and procedures, our daughter eventually turned a …

It’s not just Reflux – it’s our Lives

This is the third post in my series about living with uncontrolled Infant Acid Reflux (Read my first post Stolen Joy to find out about the condition, how it developed and where our journey began). People who helped in some way were a lifeline.  But accepting every opportunity for someone to take my baby off …