How do I even start this post? I thought it would be easy. Easy to write about how our every day lives have been affected by extreme worry, fear and mental health. Turns out it’s not. I feel very vulnerable all of a sudden, but I also want to do this time in our life justice. I want to document how receiving letters from our pediatrician can have such a profound affect on our mood, and subsequently, the household.

Hubby recently told me that he is struggling. Honestly though, he didn’t really need to say it, I could tell. The thing is, Michael is our anchor, so when he openly starts to struggle it can throw everything off balance.

It really pains me that I can’t make him feel better. That Little Red’s health issues cuts us both deeper than we would like to admit. There is literally nothing that can be done to take away our fear, and we live with the shadow of it constantly haunting us.




FEARING THE SAME DIFFERENCE

Some of our fears are different, as are some of our coping strategies. We’re both scared sh*tless of the thought of spinal surgery, especially since it’s of the major variety. Of course any medical procedure carries risk, as does administered anesthesia, so I’m by no means downplaying non-major surgery. I guess the thought of them removing vertebrae, adding rods, bolting and doing who knows what else to her tiny body makes my heart have palpitations. I don’t want to jump straight to the worse case scenario here and bring everybody down, but part of me is scared she won’t make it through. I honestly don’t know how I would cope. I try to keep busy when those awful thoughts show up.

I worry if her spine surgery will impact her ability to carry a child (if she wanted to, obviously). I know I’m jumping ahead quite a few years here, and it’s probably all coming from my own difficult journey to motherhood anyway. But I do think about that.

I can’t let myself think about her being bullied at school or comments being made about her. This is one of Michael’s fears though. He’s also worried her spine can’t be fixed and that she might, for want of a better way to say it, look different. Coming out the other side unable to walk and confined to a wheelchair is also something we’ve discussed.

According to Katie I KNOW IT'S BAD WHEN HUBBY SAYS HE'S STRUGGLING

DISCLAIMER

I want to be very clear here and say that we have no prejudice against disabled people in any way, shape or form. I’m simply being honest in my posts. This is our journey and it doesn’t come with any judgement on our behalf. This is all quite new to us, we’re learning as we go and while nothing would ever change how we feel about our daughter, we are also allowing ourselves to admit how confronting and frightening we can find it all.

We are just parents who are navigating new environments, language and processes. I don’t think there is one correct way to feel in these kind of situations. It’s all so personal and sometimes you just need time to mull everything over and gather your composure until the next hurdle. We’ve found they can trip you up quite regularly though.

Which leads me to…

WHERE WE FIND STRENGTH

I’d love to say that Michael and I get all of our strength and comfort from each other, but that isn’t true. As much as we’re in this together, we still have our individual ways of coping. For example, we both comfort eat, or at least, get the urge to. I write my blog and talk to my folks and friends. Honestly, I’m not too sure what Hubby does except talk to his family sometimes and that does concern me.

I get strength from thinking about a few people I know who have had a scary medical history with their child. My cousin and her beautiful daughter had a really hard run and I think of them often. The other is a friend and former work colleague who also had a scary pregnancy followed by huge surgery on her newborn. They inspire me and I gain comfort from knowing they’ve been through similar stuff and they made it through the other side. They’ve had to wait, they’ve had to face a barrage of information and they had to do it in a hospital far from home.

I’ve not told them how much I’ve been thinking of them and how much they are helping me from afar. I think that’s why I share on my blog. You just never know how your story is supporting or inspiring others.

WHERE TO FROM HERE?

Maybe counselling, maybe something else. I honestly don’t know. How do you cope with this kind of thing? I just keep my mind on mini-goals. Forward pediatrician letters for the NDIS application, send MRI image disc to spinal guy, book appointments, file stuff in the special LR folder.

A priority is also supporting Michael as best I can until he’s feeling strong enough to tag me out.

Love,
K x

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