Thriving…

Chloe is such a little diva! We went shoe shopping in the last week, and while I was looking for sensible sandals (not ones that fit her SMOs because she’s grown out of them – AGAIN!) Chloe had found some black patent leather Mary Jane’s and was sitting on the floor trying to figure out how to get them on!

I laughed. They would have been the shoes I would have chosen at her age.

She’s really showing an interest in dressing and choosing her things. Often when we’re walking through a clothes shop she will pull things off the rack and hold them up against her body! So funny! Such a little shopper. She likes hair clips and headbands, pity she won’t leave them on! Loves her nails being polished!

Beyond all our wildest dreams she thrives. And I credit a lot of this to the choices we’ve made for her, but often, it’s just her tenacity and stubborn willful behaviour that propels her forward.

As a heart mum, and a parent of a child with special needs, the struggle daily is very real – one of protecting her from the scary world, full of kids who might tease or ignore her, or worse, laugh at her. And kids – who are often little petri dishes of germs!

When Chloe was about 20 months the question of returning to work was very real. But also that of giving me some time out! I’m not ashamed to admit that I sometimes need time out from Chloe. She’s full on! Hard work! Often doesn’t leave my side and needs constant attention. So daycare it was!

I must admit that though I was concerned about her getting sick, as most children do, the pros of daycare far outweighed the cons. If anything actually, I was more worried she wouldn’t eat and that the time I usually took to feed her (at that age) wouldn’t happen at daycare. I knew that illness, though tough, would come and go.

And gosh… Chloe has been going to daycare for over a year now and she just loves it. Her first centre was so nurturing and caring, I knew she was in good hands. And against all odds, she ate and slept there!

On top of that they supported her sign language, her friendships and she even got over some of her sensory defensiveness, like hating sand, play dough and paints!

Now she’s in senior kindy and loving dancing, singing, group time and they cater activities to her. She loves dolls, so an activity of bathing and feeding dolls was right up her alley!

I love checking the daily write up and seeing photos of her enjoying herself! Each afternoon that I arrive to pick her up she’s often on the swing, or in the slide having the best time! I usually have the biggest smile! Not only because I’ve had some time out, well, time out to study (I’m studying my Masters in Special Education now) but because I can see how much she loves it!

Doesn’t mean I don’t worry. But I know that I want desperately to give her a normal life. Between therapies and workshops, I think it’s important that she just does regular kid stuff! It’s such a fine balancing act that is so difficult to get right.

Because the reality is – she isn’t going to have a ‘normal’ life. And hasn’t so far. It’s not normal to have heart surgery or be in therapy every week. It’s not normal to wear orthotics, it’s certainly not ‘normal’ to have little speech at 3 years old.

It’s not normal to be labellled a ‘blue Glenn’… that’s what her cardiologist said at last check. And we know that soon she might need a cardiac catheter and possibly the Fontan surgery sooner rather than later… but that’s another blog.

But there is so much ‘normal’ to Chloe that I hate referring to her as ‘sick’. She’s thriving!

Seriously, she dances until she’s blue (that’s not normal but hey – when you’re heartkid that’s your normal). She loves bouncy castles (most of the time). She throws a tantrum when The Wiggles finish! She loves a food one day, hates it the next. Doesn’t like naps. Loves the merry-go-rounds at the shops. Chocolate cake is a huge winner. As are biscuits.

She loves to get up in the morning and snuggle with me. It’s a daily ritual. That and patting the dog.

There’s so much normal that it’s important to concentrate on these ‘normals’ and not get bogged down in the ‘what if?’ and the exhaustion that comes with parenting a special needs kiddo. In fact, it’s best to leave the ‘what ifs?’ out of the picture and just concentrate on the thriving!

Like watching her dance to The Wiggles for a considerable amount of time. I mean, I have nothing better to do than allow the smile to stretch across my face when I see her ‘do the propeller’ or ‘rock a bye your bear’!