T, Niece or Nephew sometimes say things to me like ‘I hate broccoli’ or ‘I hate doing science’ and I’ve always told them that hate is a very strong word. That maybe we can think of a better way of describing how we feel about something.
But I can say truthfully and unequivocally, I hate, HATE, hate MPS.
I hate that mucopolysaccharidosis is a word that now rolls off my tongue easily when most people have never heard of it.
I hate that people I know are having to make heartbreaking decisions.
I hate that I have to watch my son take medicines and needles and recover from anesthetic with no idea why he’s being put through all this.
I hate that children are dying.
I hate that I’m too tired and miserable today to even try on some clothes that I’ve just had delivered.
I hate that I see other little boys with nasal cannulas and g-tubes.
I hate that every time you think things are looking up there is another barrier to face.
I hate that the few other families who know and understand this MPS life are spread all over the world and often out of reach.
I hate that I have to understand terms like ‘neutralising antibodies’, ‘urinary GAGs’ and ‘hypertrophic cardiomyopathy’.
I hate that this bloody disease punches you and punches you and punches you again.
And I hate that I can’t make this any better for my little boy.
Sometimes the word hate simply isn’t strong enough.
Oh sweetie,I hate it for you to.It’s unjust and unfair, and all seems terribly random.But I love that beautiful photo, and I love that I know you love him x
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Hate really is not strong enough for what your son and others suffer with. My heart breaks. Life is so so unfair!
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Sending so much love to you, there are no words xx
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