Monday, August 29, 2016

Procrastination... Living in the 1%

If it were an olympic sport I would win the gold medal, I'm sure.  I don't know how many times I have sat here, starting at the curser flashing at the top left hand side of the blank screen, only to close the page and walk away.  Too caught up in the now to put it all down in words.  Even now words are not coming easy.  What to say, there's so much to tell, but quite simply, what to say and where to start?

It has now been 4 years since Aerynn was in the Royal Children's Hospital in Melbourne, and we still have no definite diagnosis.  Well...  apparently we are very close, around a 99% certainty... but we've been there before only to have it reversed...  and this diagnosis is one I don't want her to have, so until it's 100% confirmed I'm going to dwell in the 1%. 

It has also been 2 years to the day since Aerynn experienced her first identifiable migraine.  Two years that she has been plagued by the "scratchy bug" which lives in her head.  

She is still a medical enigma.  No one can really tell us what is happening, or why...  The frustration of not knowing keeps eating me up from the inside.  We know she is unwell, we know her symptoms are increasing and slowly we see some progression of whatever this is that is stealing my little girls childhood.  But even if this new suggested diagnosis is correct, it's not something we can cure.  We can hope that there may be some way to delay the inevitable though...  

To type it here makes it seem so real.  I have been toying with saying it out loud at times...  having the words on my lips cause that all too familiar choking feeling come back to my throat.  I've even broached it on Facebook once or twice to see how it fits.  It didn't fit well though.  I mean, it fits Aerynns clusters of symptoms incredibly well, but putting the name with my daughters name feels wrong.  

Even if the neurologist confirms his suspected diagnosis when we see him again in 2 weeks, it won't be the final diagnosis.  There are many tentacles to the beast that is mitochondrial disease. We will know that she has been ensnared by the beast, however not sure which arm we are dealing with for some time yet...  

There! I said it.  I typed it.  It is there in black and white.  

Dr Google is not gentle with his information in Mito or the prognosis of children diagnosed with it.  The scary thing is, almost every week we see some small sign that she has some deterioration of her condition.  I don't want to see it, and them *bam* there it is, staring me in the face...  First it was tingles in her fingers, then they spread to her toes...  then she gets numbness and can't carry her weight...  And we used to blame her being "silly" for reacting to the tingles and numbness.  Heap on that great big serving of momma guilt there.. right on top of me, because I deserve it.  

So I guess this is the update that is long over due on Miss A, but not the update I wanted to write.  I don't really know how much longer I can live in the 1%age of ignorance...  ignorance isn't bliss in this case, because deep down I know that this finally fits.  After all, I was the one pushing for a diagnosis and answers.  We finally have one of the best neurologists in the country who thinks that he has the answers on my little girl, and our paediatrician says if he thinks that this is what we are dealing with, then we can be very certain it will be correct.  I have so many questions, however, I dare not think too hard about the possible answers...

Did I bring this upon us by wanting a diagnosis and answers so badly?

How does one come to terms with the fact their daughter is never going to be getting better?  

How does one deal with their child having what is a terminal illness?  I mean, yeah, life itself is a terminal condition... but... 

I can't do this right now.  Which is why I am living in the 1%... pretending that my world isn't about to collapse all around me.  Living in the bliss of ignorance, delaying the inevitable...  I don't think I can live here much longer, but I'm going to try to for as long as I can... I simply can't deal with the alternative at the moment. 

Happy 5th Birthday Little Princess

Our little Miss A, 

Your birthday has been and gone.  Today is August 10th, two days ago you turned 5 years of age.  There was a stage we weren't sure you would see this magical number.  You have proven so much strength and resilience.  Sure, there are challenges, but we get through them, and every morning is a clean slate and a new day to discover.  

Aerynn, you are a headstrong Miss who knows what she wants.  Your teachers believe you are gifted beyond your years and work on another level compared to other children your age.  Your brain has compensated everything your body has limited you with, but in saying that you are doing soon well physically - almost reaching the accepted growth charts!!!!!  Our little princess is growing!!!!  

So for your 5th birthday we had a big celebration - 3 weeks early. Nanny and poppy came to visit from Tasmania so we had a birthday celebration then so they could join in the fun.  Most other little girls would love princess parties or have a disney or frozen theme, but no, Miss Aerynn insisted on a high tea with her friends.  Complete with cucumber sandwiches, cupcakes and mini cups of tea.  We went racing around town trying to find a tea set for you to use, and discovered a set which belonged to a 90 year old woman.  She had it for quite a while.  It was white, and so fragile...  you could see through the china it was so delicate.  A light blue decoration was on the outside.  I loved it, it was a reflection of you... so pale, fragile and delicate with soft blue eyes burning with intelligence and a fire from within.  It was simply perfect for your high tea.

Nanny made your birthday cake.  You were very indecisive with what you wanted...  apparently a 10 layer wedding cake was not in our budget - much to your disgust.  Instead you allowed us to talk you into a pretty castle cake, complete with turrets. Nanny stayed up ALL NIGHT decorating the cake, making it perfect for our perfect little princess.  It received so many compliments!  Mummy mad the cakes to go inside, one double chocolate mud cake and a butterscotch mud cake.  There wasn't much left by the end of the afternoon, so it must have been very tasty.

For your birthday you asked for a baby born doll.  We found a fairy one in purple - your favourite colour.  Baby born has had several different names since she has been received.  Stacey, Leesa and Toby likes to call her "poop poop".  She is a very loved dolly.  You push her around in the pram that nanny and poppy gave you and feed her from the magic bottles.  I hope that you continue to love Stacey/Leesa/Poop Poop for ever and a day and remember these times you spend playing "mummy" with your baby dolls.  magical times in any little girls life.  

So Miss Aerynn, on your 5th birthday we wish you the best.  We with you everything, peace, love, a happy time on earth, we wish you enough. We have no idea how long you will be with us.  We don't know what the future holds for any of us.  Go ahead and write your own story.  Continue to fight, continue to defy the odds and how them the person you are inside.  Our strong headed little princess who confuses and astounds everyone is growing up... Continue to do so... be our strong and beautiful little Aerynn <3 

Love Mummy xxx