Month: March 2017

This week we received the dreaded pseudomonas call, this is the forth time we have had this call and it doesn’t get any easier to hear.

For those that are unfamiliar with pseudomonas it’s an opportunistic little sucker of a bug which is particularly difficult to get rid of and if left untreated can cause lung damage amongst other health implications. Eradication therapy is aggressive because it has to be and often results in two weeks of strong Intravenous antibiotics or a long course of strong oral antibiotics and nebulised antibiotics.

Receiving that call knocked the wind out of me, like I had been punched full force in the guts. As a parent one of my main jobs is keeping my children safe and out of harms way, and I somehow felt like I had failed and worst of all I felt like I had let Chester down again, that I hadn’t protected him.

I found myself retracing my footsteps, running over the places we had been since the last clear cough swab in February, thinking about where I could have gone wrong and my thoughts end up running away with me.

It’s impossible to know where he picked it up, and it’s exhausting trying to think about where he could have got it. Pseudomonas is all around us, in the environment, in the soil and pretty much anywhere warm and damp so unfortunately for those with Cystic Fibrosis or others with low immunity through other conditions it’s pretty much unavoidable and highly likely that they will come into contact with it at some point.

There are certain things people wth cystic fibrosis are told to avoid, pseudomonas hazards such as jacuzzi hot tubs, bath toys that can fill with water, mud kitchens and sandpits all of which are known for particularly high traces of pseudomonas.

We avoid these things and stick to the “rule books” as best we can. That said I don’t wrap Chester up in a bubble because if I did it would be no life for him, we possibly allow him to take more risks than we should, taking him swimming, puddle smashing, playing in the garden and swimming in Lake Geneva, but it’s knowing where to draw the line? To me quality of life matters. I want him to experience life and all it has to offer but I also want to keep him well.

Now I guess deep down I know this isn’t my fault, that it couldn’t be helped or avoided but it doesn’t stop the guilt, with Chester’s added tracheomalacia (floppy windpipe) it was always going to be more difficult to keep him well because it’s all too easy for bugs like pseudomonas to settle, I know this yet I still feel responsible somehow.

I often worry about what’s going on inside this little boy’s body that we can’t see, what’s lurking in there that we don’t know about, people often comment about how well he looks, and it’s true, he does look well and that’s the scariest bit about CF, because we can’t see what’s really going on in there.

I feel angry, annoyed and sad at the same time, that this little boy now has to be even more brave and even stronger than usual in order to fight this.

Chester will be Chester, he will be admitted for IV antibiotics and he will smash it, he will still be smiling, he will be strong and he will fight, we will remain positive and be right beside him while he fights and between us we will let CF know it isn’t going to win.

Chester is destined for great things!

This is the name given to the period of time immediately preceding my children’s dinner time and usually lasts until I am finally able to put them to bed around 1900hrs.

Roughly a two hour period where my children’s behaviour often resembles a scene from a prison riot or a spartan battle. It is the period of time in which we normally see a number of melt downs, tears, tantrums and sibling fights; furthermore it’s the time of day I generally end up with a massive headache!

I generally avoid making any appointments during this time that may require any kind of interaction because I know their behaviour will not only make me look incompetent it will also embarrass me and make me angry.

That said, I sometimes forget about the witching hour, like I foolishly did today, when I made the stupid decision to take my kids out for tea. I then found myself loosing my s@&t when my eldest was having a meltdown because his crayon from the activity pack had snapped and all the while I was trying to stop my toddler throwing himself out of his high chair as he waited for his food. He somehow always manages to get one leg out resulting in him getting stuck which then makes him scream even louder and even more high pitched.

My food goes cold every time, I spend a majority of the meal picking up food Chester has launched across the restaurant and we manage to clear the immediate area around us with Chester’s high pitched screams.

Those diners that don’t leave either quietly voice their opinion on my parenting skills or just stare in disapproval at us ruining their evening meal.

Why do I do it? I ask myself that same question every time! Each time reminding myself that the next time I think about eating out during the witching hour I will remember his moment. I clearly failed to remember today!

It’s the period of time that I would invite anyone considering starting a family into my house to witness the real horrors of parenting, you know the stuff baby books don’t show you.

I always find myself asking what is it that makes them so wild? What causes my kids to change from their normal happy selves into wild, savage animals.

It can’t only be me this happens to? Surely it’s not just my children that go feral at this time of the day? Why don’t I see anyone else going through this?

I’ve come to the conclusion that perhaps the reason I haven’t noticed others being pushed to their limit during the witching hour is because they are sensible enough not to take their children out during this period of time and it’s just me that forgets and then has to endure the witching hour behaviour.

I’ve slept upright in a hospital chair next to your cot listening to your shallow breaths and I’ve held you in arms my not knowing if you’ll make it.

I’ve held you down for Doctors and Surgeons and cradled you while your heart and mine were breaking.

I’ve sat up all night with you when you couldn’t sleep through coughing and then I’ve fought to wake you up when it’s time for treatments.

I’ve held your tiny hand for hours on end when I’ve been unable to hold you and I’ve cried more tears and felt more sadness and guilt than I ever thought possible.

This isn’t how it is supposed to be and this is not the life I chose for you.

You are strong and brave and you are above all else a fighter.

No matter what life throws at you, you take it in your stride and you still manage to smile even during the toughest of times.

I want you to be free to live your life unlimited and I want you to do what makes you happy and take risks.

I will forever be in awe of you. Your strength and determination have made me a stronger person.

Never give up that fight or loose that drive and remember I am always here fighting right beside you. Your fight is mine.

You really are a true hero, and best of all you are mine and I know that whatever comes your way you will be just fine.

There are days when I want to wrap my beautiful little fella up in a big bubble and keep him out of harms way, keep him away from nasty bugs that want to do him harm and away from other people who could make him sick.

Days when staying inside, shutting the curtains and avoiding the world seem like the perfect option, but to do so would mean letting CF win.

Instead what I do is stick up my middle finger and shout out a big f@&k you to CF.

I book that holiday and we take that trip. We climb those mountains and swim in the sea. We play in the snow and we lay in the sun. We try new things and gain new experiences.

We shouldn’t just stop because of CF, we may need to take extra time to think about it, to organise it and learn to feel happy with doing it, but we should almost certainly go for it.

Own CF and give it a run for it’s money! Show CF it picked the wrong child, remind CF who is in charge and remember you have totally got this!

I live by those rules as as such I am showing my boys the world and I’m helping make amazing memories that CF can’t touch.

I’m teaching them that no matter how rubbish the hand that has been dealt is, life is for living and for learning, I’m teaching them strength and determination and above all else I’m teaching them to live without limits.

I am not letting CF win!

Today is International Women’s Day, a day to show respect and celebrate the amazing achievements of our fellow females.

A day to give a high five to all the strong women in your lives. Mothers, grandmothers, sisters, aunts and not forgetting the little girls we are raising to one day become strong women.

A day to thank those strong women who despite persecution stood up for their beliefs, who have fought for the rights of others, for equality and for political and human rights.

To think about those strong women whose battles we can never really comprehend, the women who live everyday across the world in poverty, the women who fight everyday for survival and for the survival of their children, the women that live in fear and the women who sacrifice all for those around them.

To celebrate the strong independent women who are raising their children alone, and to those who selflessly for whatever reason find themselves raising other women’s children.

A day to pause and think about the strong women who are fighting for their lives battling illness or the women caring for others who are fighting.

A time to reflect on great women of the past as well as the present, the military women who sacrifice time with their families for their country and those that in their service made the ultimate sacrifice.

A day to think about the future and educating the next generation of strong independent women so they too can go and achieve great things.

Never forget we are where we are now because women before us fought hard for us to have those rights.

Remember we are strong, help to raise the women around you up instead of knocking them down, tell the strong women in your life they are great and remember, even when it doesn’t feel like it; we are always stronger than we give ourselves credit for!

If you’re having a particularly pump day remember there is always someone having a worse one! Today that person could quite possibly be me!

So today is Sunday, the weekend, time for a lay in after a hectic week of work and early starts! Well that was until I was gently reminded at 0445hrs this morning that I am a parent and that lay in’s don’t count and yes; I know, before you say it, I chose to have children.

In a tired and very much dazed state I spent the first 20 minutes of this morning peeling my youngest out of his poo covered pyjamas, trying my hardest not to become contaminated with the contents of his now exploded nappy.

I somehow managed to carry him, naked and still covered in poo to the shower to hose him down. My moment of failure was not ensuring the shower head was at the optimal angle before hosing him down, which resulted in being struck in the face by the tidal wave of poo and water that had been deflected off of him.  My only saving grace was the fact my mouth was closed.

Having cleaned myself up and loaded the washing machine and switched it on only to see the Sky TV and the DVD player remotes swirling around in the washing machine which is now filling with water, yes, parent error for not checking!

By breakfast my house resembled a warzone and I have folded the washing basket contents at least 20 times following Chester’s destruction. He destroys one room; I go and tidy by which time another room is destroyed. It’s a vicious circle of destruction and I struggle to comprehend how one small person can bring a whole house to its knees in minutes.

I have decided I really don’t want to parent today, but despite not wanting to, I have to, I have no choice, these two need me and they need me to parent.

No one said parenting was easy, we all make mistakes and I would be lying if I said otherwise.

Having CF in the family just means there are a few more opportunities to have parenting failures.

My most common one is forgetting I have undone the bottle top on the flucloxacillin, resulting in the complete redecoration of my kitchen in a less than subtle shade of hot pink when I stupidly shake the bottle. Remnants of the sticky, smelly, sugary mess are there for all to see clashing with the carefully selected shade of plum I chose to decorate with.

Stocking up with my CFers favourite yoghurt because he is refusing to eat, he looks a little on the skinny side and the yoghurt is half price (bargain), then finding out when I get home I picked up fat free.  This can only be compared in the adult world to picking up a bargain bottle of wine only to find out its got no alcohol in it and was really just an expensive grape juice.

Going out for the day and forgetting to pack the creon. Then spending hours hunting for fat free food and snacks so I can feed my child without giving him sore guts and risking being up to my elbows in poo.  Is it wrong to feed your child ice-lollies and jelly all day?

Popping to the supermarket for milk without the nappy bag because I know I’ll only be a few minutes but then arriving and loading my child into the trolley and realising too late that my child’s creon dose may not have been quite right resulting in a ‘poonami’ that his clothes can’t contain.

My most common fail is knocking over the contents of a new pot of creon micro, resulting in creon sticking to our bare feet for weeks. Those little suckers are great at avoiding the hoover and they seem to get everywhere!

Changing my little ones soaking nappy when arriving at the hospital for CF clinic forgetting he will need to be weighed first, those extra grams of urine soaked gel added to the McDonalds he ate on the way in could have made all the difference.

And finally Kissing my child’s sweaty head with cracked lips and feeling that salty sting! No matter how bad the sting I know it’s completely worth it!

But really, who cares if we make mistakes, who cares if somedays we aren’t on form, if we don’t get it right, we are but mere humans and unlike our CFers we do not have superpowers.