Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Time, Patience and Love

 

 

 

As I look back around the time that Fiona was first given her diagnosis of having GM-1, I am able to share a few lessons I’ve learned through my experience.   I recall having done a tremendous amount of research online about metabolic storage diseases in order to prepare myself for the diagnosis.  Even though I tried to prepare myself, the diagnosis was still a kick in the gut and I found that really no amount of research or reading could truly prepare me for this experience these past nearly 3 years. There was that small part of me that thought the doctor would say Fiona was “normal” and that there was no need to worry, but…that just wasn’t the case, that is not what was in store for Fiona, or Paxton and me as her parents.


On the day Fiona was diagnosed, I cried and held on to Paxton. I went into our room and cried some more.  I buried my head in a pillow and screamed as loud as I could.  I was heartbroken, angry, confused.  I had read somewhere that after a diagnosis, there is a series of emotions that a parent goes through, I felt them all – and some emotions are better left unsaid.


Nothing I read prepared me for the years ahead.  Not a single book or online research prepared me for the hardships of parenting a terminally ill child or the heartache I’d feel when seeing other kids Fiona’s age on the playground down the street playing happily.  None of it prepared me for the revolving door of therapists in and out of my home or the daily care that is demanded of me.  Nothing I read prepared me for the emotional toll it takes to parent a terminally ill child nor the advocating for my child’s rights and needs.  

 

On the other hand, those books and online research also never prepared me for the excitement I’d feel when Fiona sat for the first time or for the joy I’d feel watching Fiona giggle and laugh when her father would talk to her or for the tears I cried the first time she babbled endlessly while watching Sesame Street.  In the last three years since Fiona's diagnosis, there have been so many firsts and I’ve treasured all those happy memories.  They are the memories that keep me going on the really hard days.
That’s the thing about raising a child terminally ill - in time you can find peace with it & embrace it, knowing that there is no cure for it.  But to prepare for & accept it is altogether something else.   I’ve realized that acceptance is not a one shot deal, it’s an ongoing process.  There will always be something new to accept.


I spent a lot of time preparing for parenthood and even more time preparing for special needs parenting, searching for answers to all of my questions.  Over the years, I’ve realized that you can’t prepare for it – it’s not a test you can study for. You will never find the answers searching online or in a book.  The real answers come with time, patience and love – and Fiona taught me that.



 

 

 

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