Everything is a-okay

I am one of those perpetual people-pleasers who never wants to disappoint anyone. Keep them all happy and they’ll like you.

I am also one of those people who doesn’t like to share my feelings. I don’t like to do it and I don’t even really know how to do it, even if I wanted to. Which I don’t.

And this all makes it very uncomfortable when I have bad news. I don’t like to tell people bad news. I learned this a long time ago, back when QB was diagnosed with leukaemia and had a bone marrow transplant. Keeping friends and family updated usually meant that I stuck to the facts – the treatment plan, what the doctors had said that day, how QB was feeling, that kind of thing. Always with a positive twist, a bright point to the day. Because after all, no one wants to hear anything bad. And I didn’t want to tell them anything bad. After all, what could they do if I did tell them just how much it sucked?

I was, rightfully, superfluous to the update. If anyone asked, I mentioned how busy it was balancing work and hospital or the different meals I was cooking to take into him every afternoon. If pressed about how I was feeling, I would say I was tired – and stress eating Malteaser ice cream bars.

But that is nothing compared to trying to share news about Miss Z.

Most of our family and friends are overseas. Do I send them an email? Message them on Facebook? Call and casually bring it up in conversation? Or let them find out by reading my blog?

Or not tell them at all? After all, there really isn’t any news to share – its not like anything has changed from last week or even last month.

How do you share bad news about your four-year-old daughter? My few attempts so far have more or less been total failures.

Although it probably isn’t nearly as bad as trying to tell people in person. I have the distinct feeling that several people wonder if I’ve lost the plot. After all, who remains positive and upbeat after telling you their child is unlikely to ever recover from her chronic respiratory problems and as a result is expected to be ‘life limited’. But that desire to please kicks in and I smile and mention all the good things – the communication revolution, success at school, an upcoming holiday – rather than lingering on the bad news.

One of Z’s therapists asked me today how I could still be so positive and I replied “denial”. After all, there is a healthy dose of that, too.

I keep thinking that maybe I am making something into more than it really is. Perhaps I misunderstood what her doctors have been telling me. And after all, no one really knows what is going to happen, so why dwell on the negative?

Except the negative is a big weight hanging around my neck, distracting me from everything else.

Which is ridiculous. Its not like QB and I haven’t suspected this could happen for a long time now. Children with complex medical issues like Miss Z don’t always go on to live long and healthy lives. We know this. Last year, after she had a status seizure and was nearly intubated because her sats dropped so low, QB and I acknowledged to each other that it could happen again that she might not come home on that occasion. So it isn’t like we were totally unaware.

But it is also like when we were first told by a doctor that Zoey had permanent “problems” that she wasn’t going to ever outgrow. We knew (or at least strongly suspected) that before we had taken her to the doctor – after all, that is why we had gone to see him, because we knew there was something wrong. But we were still devastated to have it confirmed by a doctor. So, we knew it was bad that Miss Z had been suffering from recurrent chest infections since December, but it doesn’t make it any easier to hear.

What feels hardest for me at the moment is feeling like the rug has been pulled from under my feet – again. I had come to accept that Z would always have special needs, that she would always need assistance, and that she would always live with us. I have tried my hardest to embrace that new scenario over the past four years and it no longer seemed scary or unpleasant – it was full of new opportunities. I was inspired by parents of other special needs children who emphasised if we could only do the right therapies the right number of times, Miss Z could sit, walk, communicate. I met parents of young adults with complex disabilities who were living happy, fulfilling lives – and equally importantly, so were their children.

Now, I’m not sure if that is where I fit any longer. Of course I’m not going to give up on the therapies or the hope of a bright future, but suddenly the medical side of things outweighs everything else. Whereas before it was about using therapy and determination to expand and improve Miss Z’s world, it is now about medically managing her from home in order to avoid hospital admissions.

But for now I’m trying to live in the moment and not worry too much about what might – or might not – happen in the next week, month, year, decade. So, if you ask me how I am and I say “fine” that is because it is. Right now, everything is okay. And here’s hoping it stays that way.



One response to “Everything is a-okay

  1. I don’t know what to say to comfort you but I sincerely pray miss z’s health will improve and you will find peace in whatever tomorrow brings with it .. Hugs !


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