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This is what the mother of a sick baby wants you to know

 

 

 

 

Dear Friends,

I do love you so, I relish your company and, above all things, you keep me sane in this crazy ride that is motherhood.

But I’m afraid I won’t be able to see you for a while.

You know, it’s about Molly. The first coughs have hit us this season, and my heart has begun the jitters, my brain is whirring in pessimistic overdrive: Is that snotty nose a little green? Oh, your son had a restless night – illness brewing maybe? Don’t they say there’s still a risk of infecting others for 24 hours after a temperature?

I fall nauseous at the thought of our Miss Molly catching something – a cold, gastro, bronchitis. And with all the unimmunised children about now, deadly diseases seem to be winning the war of ill health. There are so many things which could bring her fighting gloves down and threaten her life.

You see, it was as simple as someone sneezing or coughing on her in the first place which gave her this damned disease.  Just unlucky they said, that she managed to pick up one of the strains not covered in her immunisation. That pneumococcal illness – yes, that’s the same one which leads to meningococcal – is apparently very common, something many of us carry around in our nasal passages or throat.  But most think it is just a cold their child has – and if they’re over two years of age they’re likely strong enough to fight it off.  But not when they’re six months old, like our little Molly was. Then, it can kill you.

We were lucky, I’m well aware of that. Those medical magicians saved her life.  But not before the bacteria ravaged her little hip, leaving her disabled and looking toward a life of extreme pain.

But my major worry is that a skerrick of bacteria still in her system might be given the chance to ark up and multiply again. You know, her body is down and out with a cold, and unable to keep under control, as it normally does, those couple of remaining mites that might be lurking.

If she’s tired, I wonder… Is she sick – is the bacteria back? Or is she just “growing”, like a normal child? I don’t know if I ever explained to you, beautiful friends, the latest news we had, which was that the pneumococcal bugs got into her bones? That is why her hip ball joint completely disintegrated. Unfortunately this means if the bugs do regenerate, they are undetectable for a long time while they grow strong as an army, because bones don’t speak of pain.  When the pain does come, it’s too late, they’ve feasted on all the bone, and are looking to switch off the bright shining star that is our Molly.

Anyway, this is not your problem.  I just feel I need to explain my absence. I don’t want to lose my friendships, or those of Molly’s older brothers – I realise I haven’t even been catching up with their friends at the park like we used to.  All those slides and climbing things off which Molly could fall and dislocate the delicate structure in her hip…Scares the living knickers off me.

It’s ridiculous.  You, my friends, are the ones who keep me sane during the very best times of motherhood:  I need you so, during these challenging times.  I’m amazed that you have still managed to be there even though I’ve kept you at arms length.  Like you, my thoughtful friend, who dropped in with flowers after I dumped tears all over you in the carpark when we’d found out Molly would be disabled.  Or my group of lifesavers, who thought about me, as well as the patient, and organised some recuperative time out when I emerged a train wreck from living at the children’s hospital.

But anyway, this is not about me.  This is one of those times when baby really does have to come before the needs of mum.  I have to choose my baby’s life.

Lots of love, please don’t forget me.

Catapulted into the glamorous world of fashion and beauty, Felicity began writing, editing and styling nearly 20 years ago. She blogs here and is also writing a book on Miss Molly – the subject of her submission today.

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Top Comments

SarahJane86 12 years ago

Mama, why don't you get in contact with L'il Aussie Prems? They might be able to put you in contact with a playgroup for microprems. Those mummies will be just as vigilant about germs as you need to be.

Molly is so so beautiful. What an amazing little fighter!

fjl 12 years ago

Great idea, thank you!


timelady 12 years ago

We are here behind the safety of a screen, whenever you need a virtual shoulder.

I can't ease your 'right now' fears, but I can hopefully help with your 'when she grows up ones. I am crippled, with a severe spinal injury and chronic pain.

I have five amazing kids, am about to start my dream job lecturing at my beloved university, and the best bloke in the world. A wonderful life, in fact, with people tolerant and patient when I cannot move, the bad days when I have pushed too hard.

One grows accustomed to severe pain, in such odd ways. You manage, adapt, and deal. CBT (cognitive behavioural therapy) is such an indispesable tool in my arsenal, but just one in my bag of tricks.

In short, she too can have an amazing, rich full life. It will just be sadly different from what you hoped for her. I have found that is the case with all our children, however, we can only do the best with what we can give them.

And it sounds like she has lucked out with an amazing mum. Good luck to that sweet little princess, and to all of you. We are just a keyboard away...

fjl 12 years ago

I can't tell you how great it is to hear from someone who is living through a similar thing. The doctors don't really know how her condition will pan out, they've just told us of the many things that could happen in her future, and that there may be more they don't yet know of. What you've just given me, as well as the practical side, is that she'll be fine if her attitude is right - and luckily she was born with all the spirit to deal with it. I just need to concentrate on my own attitude now so I can be her backup. Thank you so much. xx.

timelady 12 years ago

I am only too glad I could help:) Chronic pain is one often one of the least understood aspects of disability - there is often nothing to see. But it is also an odd source of growth and strength. I hate my bad days, but I have also learnt I have a resilience and ability to cope that I never knew. I know my friends. I know when to be vulnerable, and when to be strong. In short, it is an oddly twisted blessing - albeit one I would wish on nobody.
Your little girl will know no other life. And while that is crushing to you, there is a sad advantage to it. She develops her strengths young. The young are, after all, most adaptable. I have no doubt she will live an amazing life. And do not discount the advances made every year in medicine!
And again, she sounds like she has a most amazing mother:)