Since before Christmas Ava has unfortunately been very unwell and has had 3 operations, she is due to go for her fourth one today.
Life is this fast lane is hard! Life with a special needs child is never ending, it’s like someone has thrown a grenade at you and told you to run. Just keep running and whatever is thrown your way you must keep up the pace and keep hold of that Grenade.
It is utterly exhausting.
It isn’t the nature of having an unwell child that is exhausting, it’s the brace face you put on each time you step through those hospital doors, the polite exchanges made between other parents; to the nurses who laugh and joke and try and make things “normal” for you, even though, we all know this isn’t “normal”.
My heart shatters each time she spikes a temperature, each time a new bug grows in her blood stream, her urine, her stoma sites a even on her skin. Continually stuck in this loop of infection, of antibiotics, of illness and depleting her immunity that is standing, very boldly, very proudly even though it’s on the brink of collapse.
I’m forever in awe of all that my daughter goes through, it’s so much for one small human to endure. 36 operations, 36 anaesthetics, – 36?! And she is 4… my mind boggles each time I think of that but they are facts.
I’ve cried oceans. Tears I never knew I had left I’ve cried as I’ve held Ava’s hand and wished the pain away; wished the suffering away, but I can’t take it. Guilt washes over me like poison, forever guilty that I can’t eradicate her suffering and I so badly wish it was me and not her.
I do this on my own. I don’t have family or friends surrounding me, I silently cry tears I torture myself and I apologise everyday to my beautiful daughter that life has to be this way.
I don’t know how long I have left with Ava, but I promise I love you with every ounce of me, and i am sorry that mentally I’m not always at my best but I really do try and I hope you know this.
We have a doctor due to assess Ava soon to give us factual information on the life expectancy Ava is likely to have.
It could be a blessing, it could be a curse.
We will soon see.