Monday, November 11, 2013

Letter To Boogie

Hey baby boy ...

Just wanted to write to you ... Something you said today struck a HUGE chord with me ...

"Sorry I am soo sick all the time mummy" ...

Of course I replied back with, "It's not your fault baby ... everyone gets sick sometimes ... just you and I have silly blood and immune systems that make us sick more than most people".

IT BREAKS MY HEART ... Every day that I can't stop you from hurting ... That I can't stop you from getting soo sick all the time ... and that being soo sick and confined a majority of the time stops you from experiencing the world.  One day you're going to look back and wonder why I pushed you soo hard to fight your battles every day ... And hopefully one day it will have all been for a good reason!!!

Wanting you to put on weight when you were teeny tiny was my first wish ... A wish that I didn't know how hard it would be or how long it would take... with your sensory processing and oral aversion .. reflux and colic .. it has taken you nearly 6 years now to put on 14kgs ... It has been a long fight ... that is ongoing ... That I wish I could make easier ... But how do you fix your brain and tell it to stop being soo scared of the food that we all eat???  You are starting to look healthy now ... I can't see your ribs any more ... but I had to fight tooth and nail to get you as far as I could ... so that you could figure it out on your own ... Therapists now help both of us figure it out together... to try and make sense of it a bit more ...

We have had such a long road Boogie... fighting every step of the way ... I knew even before you were born you would have a battle on your hands... knowing that you had a 50/50 chance of having the same blood disorder as mine ... Your Daddy had to have a blood test when I was pregnant to make sure he didn't have it in his blood too (which he didn't)... so that they knew what they were going to be dealing with when you finally arrived ...  But I knew you would have my fighting spirit in you ... I knew it even before you were born!!!

That we had to fight through your bad reflux and colic ... not being able to sit up for a long long time was one of the first things the child health nurse played down ... they kept telling me it was because you were soo small ... But I knew better!! Not being able to pull yourself up until you were well past 12 months old ... and not even taking your first steps until you were nearly 2 ... Staving off febrile convulsions and fits .. one after another ... until finally we were both at breaking point!!

Along came one of the most amazing paediatricians that believed my words - that I wasn't a looney ... that something was not right ... that I wasn't just an over concerned mother ... He fixed my mummy sense... And believed that inner voice in the pit of my stomach that said something was not right ... With that came a cerebral palsy diagnosis and a referral to a specialist centre ... followed closely by your sensory processing diagnosis ... it has all just gotten soo much less clouded in our world!!

The fact that we both faced that path alone when your dad stopped being in our world when you were 2 hasn't stopped us fighting on ... If anything it has made our assault on the world that much stronger!! My Boogie boy this is just the beginning for you ... And you don't have to be sorry for being sick ever!! I am sorry for not being able to stop the effects of the world on you ... The guilt that I feel for not being able to do more and protect you more than I already am ... To not have the funds to help you experience the world more than you already are ...

I promise you that you will conquer the world one day!! You will be the Engineer you want to be ... You will build robots to help children who are disabled just like you and kids that have more things than we can ever imagine going on too!! ... You are going to change their world ... Just like you have already changed mine!! Never be sorry for something you can't control ...  Because one day you will figure out how to grab it by the horns and snap everything back into place where it should be!! I love you Everyday ... no illness .. sickness or disability will ever change that!! You are here because I put it out into the universe that I could handle what it had to throw at us ... and I would never ever change a thing!!! Please don't ever forget that!!! 

Love Always!!!!

Mummy xox 

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