My regular readers will know I’ve been a bit down this past week or two. Undeniably a big Post Natal Depression (PND) trigger was a meeting with the hospital that handled the girls birth. I’ve written a fairly extensive complaint letter that details some major oversights regarding my experience throughout 2016. It actually spans four departments and so I met with various directors where we could discuss the constructive feedback. It undoubtedly brought up a lot of negative feelings for me and so I began to spiral pretty hard. Another thing that I simply can’t ignore is the fact I don’t think I’m coping with Little Red’s health stuff.




I’M A BIG SCAREDY KATE

I’m petrified, terrified, horrified, all of the fieds you could possibly ever think of. As the date of her MRI approaches it all feels very real. I’ll try to explain that sentence because even I’m not too sure what I mean by that.

Obviously I KNOW her health issues are real. I’ve been there every step of the way. I’ve researched, asked questions and even advocated for her when I’ve been told by a medical professional that there isn’t a problem. All of her ailments arose during six weeks gestation so we believe they’re all linked in some way. Rare syndromes have been suggested and investigated and I’ve scoured the web for hours to be able to bring my own ideas to the table. I may have no medical training and seriously, I know I can’t use the whole “well, my mum’s a nurse” reasoning in this scenario, but I’m no idiot either. And I have the most important thing on my side, a Mothers Intuition.

I’m desperate to get to the bottom of it, but as we dig deeper and rule things out my fear intensifies.

HOLY SCOLIOSIS BATMAN

As you know, Little Red has been diagnosed with scoliosis. Not just any scoliosis though. She also has incredibly rare malformations of the spine called butterfly and hemivertebrae. Google them, you won’t find much.

However, what we do know is that she’ll need operations. Yes. Plural. The first one will potentially be as early as next year. While part of me is eager to get there and get it done, another part of me wants to stop time right now.

But, we can’t put it off. Literature tells us that the earlier the intervention, the better. We’re doing everything we can to give her the best shot at being able to grow, for want of a better word, normally, without any subsequent health effects of this condition. (Severe scoliosis can affect other organs, such as heart, lungs and liver if left untreated, as well as other ailments such as pain and issues with posture, gait etc.).

I wish it was as simple as what we first believed, that she would wear a brace or a cast at most in order for it not to worsen and then have one surgery when she reached full growth.

According to Katie I DON'T THINK I'M COPING WITH LITTLE RED'S HEALTH STUFF

SERIOUSLY, WHAT DO I DO?

Please tell me how I’m supposed to cope. Please give me some guidance because I have no fudging idea. I mean, obviously I KNOW I will manage, because I have to. After all, it’s not really about me. But I can’t help but feel so powerless, so helpless, so… inadequate. I’m a mother bear through and through. I would kill for my kids, and I say that with bonafide crazy eyes. (You think I’m joking but I’m not. I wouldn’t even hesitate *the sound of nervous chuckles*). But in this situation I can’t do anything. I wish with all my heart and soul that it was me it was happening to. When I think about what will happen to her tiny body – which is about every five minutes – my stomach does flips.

I go between emotionally eating to feeling nauseous and having a complete loss of appetite. If it wasn’t for the fact that I HAVE to keep my sh*t together and go through with being the mother of a child who needs major surgery and subsequent care I think I’d have a breakdown right this second. Alas, the very thing that is making me burst at the seams with anxiety is also the thing that is giving me determination to see it through and simply be the best support person I can be.

But please, please, I’m begging you. Is there a coping strategy? Will I one day be a pro at this? Will it get easier? Will I be less of an emotional wreck as time goes on? I’m not really asking for answers, I guess I know a lot of them already. But just tell me it’ll be okay. More importantly, that she’ll be okay. Can you guarantee it, even? If I begged?

Love,
K




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2 comments

  1. No-one can tell you it will be ok, it might not be. That’s the initiator for this post and the whole shebang of feelings =/ There are, however, many people out there both in person and virtual who will hold your hand and help you through whatever the future holds xx

  2. Melissa is right Katie, your not in this alone……we will support you every step of the way ,even if it’s from the other side of the world. This child is beautiful and special. The future is unknown but there will be no shortage of love to help her through difficult times. Xxxxxx

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