Hubby and I have had a tough weekend, mentally that is. Primarily because Little Red’s MRI is later this week. We’re worried sick about the general anesthetic she’ll be having and anxious about the results. We’ve also both admitted to having a certain fear about the future, namely because we already know what some of it with entail. Seeing a spinal specialist is the priority, along with continuing the other stuff (physio, occupational therapy, pediatrician, ophthalmologist) that we already do.

We know that at the very least Little Red will require a back brace. We’re already noticing how her body is changing and giving in to the scoliosis, and with that comes lot’s of other issues. (You can read more about her scoliosis by clicking here).

Our pediatrician has somewhat prepared us for the fact surgery will be in her future before we had initially hoped. Since her actual back bones are malformed and thus not really able to support her, it’s not just the curve we need to be concerned about.




VERBALISING VS INTERNALISING

We chatted about it all quite a lot, which was good. I told him we need to band together and tell the other when we’re feeling down or like we’re not coping with the looming procedure. It’s not just that though, that is weighing heavily on our minds.

Throughout the talk we realised that it’s not actually all about the MRI, it’s the fact that it’s probably all going to get much, much harder after it. I don’t think I can properly articulate the mental stress everything has had and is going to have on us just yet. So, I may have to dig really deep one night when the kids are in bed and write a post then. Or maybe I could even wait until I’m having an emotional outburst in public and jot down my thoughts then!

Seriously, we are so very fortunate to have lot’s of family and friend support. Honestly, we always have an ear. But physically, it’s still really, really demanding. Especially when some things are on a shorter notice or can eat up a whole morning. We already navigate a lot of her health stuff by ourselves and not being able to ask a grandparent or Auntie to watch the other kids for an hour or two makes it all the more difficult.

AS I WRITE THIS

As I write this I actually feel tears come to the back of my eyes. I probably need to have a big cry, at least before the big day. Maybe that’s when the words will flow and I can let loose how tough it’s really been. I feel like I keep a lot of it in because I have to. Those with children know they don’t really give you a break and the reality is I’m rarely alone. I try to enjoy my children when they’re up, I like playing with them and by the time feeds and changes are done it’s almost time to do it all again. If I constantly crumble I simply don’t have the strength to do what needs to be done.

Mentally I need to keep my eye on the ball; and that is managing medical appointments, applying for the NDIA and keeping the home running so that Hubby can at least concentrate on work while he is there. I think I have an inner strength keeping me going too though, and that comes from Little Red. As her mother there isn’t anything I wouldn’t do to get her the help she needs and that’s all the energy renewal I need some days.

Love,
K x




1 comment

  1. Little red might have a problem with her spine. But she has a stronger backbone than most. She just gets on with it and that has to be applauded and admired. Her fortitude and courage humbles me. Love my little bear. Grandad xx

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