My baby, Master G, Fiffy as you called yourself back when or as you are now known Tiger-Kanga,
Oh how you are one of a kind !
You came into this world in such a way you made the world around me revolve. Your birth healed an immense pain & sadness & made me realise how strong I truly was. When I pulled you up into my arms all I could see was the most wonderous being ever. I had helped create another perfect being.
I rode a fantastic high & boy was I glad I did with all the feeding problems, the vomitting & the bowel movements that required hazmat suits. Sadly it all came crashing down when the feeding never got better nor did anything else, they infact got worse. I felt like I was fighting an uphill battle every day to feed you or to get any doctors to listen to me that something was wrong. Apparently I just had to feed you. Umm yeah OK.
I really do not know how I got through those months but I also know it was through the love of many around me that helped. Some nearby while others interstate, even with their own sick kids helping me through the endless days & the traumatic nites. I just wished for a doctor to listen.
That wish finally came true when you were taken into Sydney Kids admitted under Dr Jackson who was amazing & I can never be grateful enough for. He actually listened & never once dismissed me. We finally had help & while it was tough going we made big changes which helped. I was told we would go home with you on a feeding pump with an NG tube ( Nasal Gastric tube to feed through ) but I stood my ground refusing & while you were never the perfect feeder they accepted I didn't want it. Not because they are bad or anything else but because I knew deep down if you stayed on that you would never feed orally & I stand by that especially now with how you would rather starve than eat some days. There have been times when we have had to return to hospital, to deal with the tubes again undergo more testing & probably will continue for some time yet but that was a turning point for us. Getting some answers or at least a plan & knowing where to go.
After that initial 15 day stay at 6mths you came home a different baby, you had colour & would smile more than anything else. You became a cuddly little man & yep you certainly were & still are a mama's boy.
You struggled through a lot of your milestones, no biggie every child is different. Your reflexes weren't what they should be but again no biggie not every kid can be perfection. You are a cluey kid, terribly cheeky & what I call my firecracker so pfffft to that stupid blue book.
You often love to spin & swing. Can get a little rough in the playground as you deem the swings as yours, you also decide biting works well for you & I am tempted to buy you a collar at one stage for the amount of times you have come at me or Mr McBoof in sheer anger or frustration. You hate using your words, you prefer to growl. That works well. You hate barefeet & love to walk around without pants. Yep there a number of stories in that for your 21st.
You will only eat crunchy foods, you will scream if the bath water is warm cause it has to be tepid, you peel mandarins just to sniff them & will also sniff people & lick various objects including poles, handrails, windows & some people ... Yep more 21st stories.
You are obsessed with tigers, hence the name ! But you also have a love of a lot of animals & of course dinosaurs. You love Octonauts ( love Peso the penguin especially ) & besides an obsession with In The Nite Garden it really is one of the only shows you will drop everything for. Although I do now see you wanting to be a bigger boy & more like your brother so Horrible Histories & the Deadly 60 are certainly rate by you.
Your assessment earlier this year really hit me hard, in so many ways I knew the answer but I had talked myself out of it for so long it was hard to swallow. I couldn't understand how my two gorgeous boys were so different, so amazing, so ASD. It's normal around here ;)
Nothing changed that day yet everything did.
More appointments, more therapy, more routines, new routines, new ideas, new what seemed like everything in our world yet again.
You really are my firecracker, you make me laugh every single day. There are so many things you say & do which amaze me & almost knock me over. Your frustrations in this world are so different & displayed so differently to your brother I often forget that you aren't coping, that it isn't just bratty behaviour but an inability to cope with what's going on.
I feel like I am having to re-learn everything all over again, but that's OK because I relish doing so when the two of you teaching me about the world opens my eyes in more ways than I could ever have imagined.
My sweet gorgeous boy how I am so grateful you came into our world, love you xxx
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