Month: February 2017

I have to admit I’ve never been one for superstition, legends or alternative therapy but as far as CF goes, I’m willing to listen to anyone with advice on safe alternative practices or remedies.

During my trip last week in the Scottish Highlands I came across a Well in a woodland. I was surprised at the rags, clothing and linen that were hanging in the trees and although a little eerie I did go for a walk amongst the rotting cloth to take a closer look.

Amazed at what I saw, babies clothes, muslin cloths, shoes, socks and teddy bears, I turned to the Internet to see what it was all about.

I read about the tradition of hanging rags or “cloot” at the Well as an offering as part of a ritual.

All part of an ancient tradition mainly adopted in Ireland and Scotland, whereby pilgrims would place rags or clothing “cloot” or “clootie” of a sick child near the Well mouth as an offering. It was believed that as the rag began to rot the illness of the child would start to disappear.

It was also documented that the sick children would sometimes be left by the Well overnight in the hope their illness would be cured. Being that I couldn’t really leave Chester there overnight, I soon found myself digging around in my bag for something belonging to him.

I guess I thought anything no matter how far out it seemed was worth a go.

Oakley and I went back to the woods and tied the cloth to the tree above the Well which will be there now until it rots, another offering from a desperate parent with a sick child.

Don’t get me wrong, I’m not stupid, it’s pretty obvious to me that CF isn’t going to leave Chester without medical and scientific help, but where’s the harm?

I am willing to try anything, placing that rag on that tree with the other offerings made by other hopeful parents made me feel a little better for trying something new.

What do you see when you look at me?

Take a look, what do you see? A cheeky toddler? A “normal” happy child? Nothing out of the ordinary?

Looks can be deceiving. Behind my beautiful smile I am having the fight of my life. I am fighting for every single breath!

My condition is invisible, but it’s there.

What you won’t see when you look at me are the medicines and nebulisers, and the hours of physio I endure to stay “Well”.

You will not see the days I’ve spent in hospital and the surgeries I have undergone.

You won’t see the agony I’ve been through and the pain I still have to face.

I am only small, but already my body bears the marks of my battles, battles I took on and won.

Looks can be deceiving, I’m having the fight of my life…….. for my life.

I am fighting Cystic Fibrosis.

5 years ago today I started my motherhood journey, here is some of what I’ve found becoming a mother actually means…..

We all have this vision of what we expect motherhood to be, picnics in the park, coffee mornings with other mummy friends, baking and decorating beautiful muffins with our children and fun family outings full of smiles and laughter; the reality of motherhood in fact somewhat differs.

Becoming a mother often means functioning on very little or no sleep, aimlessly walking, dazed and confused through parenthood in a zombified state; somehow managing to wash, dress and feed our small people whilst having no real recollection of having done so.

It means never again being able to wee in peace, even when the small army of mini people you have created get bigger and no longer feel the need to have eyes on you every waking minute of the day, you will find them pulling impatiently at the door handle you so selfishly locked, poised with suspicious intent ready for the moment you unlock that door.

Somehow still managing to get fat despite living on a diet of leftover sandwich crusts usually minus anything that resembles a sandwich filling, stale or soggy wotsits and half eaten biscuits, never really owning up to the fact it’s probably more likely you are fat from shamefully hiding in the utility room smashing the family sized dairy milk bar you hid from the little people behind the milk.

It means never sleeping alone…… again……ever. The whole image of a beautiful woman cradling her child whilst co-sleeping are a con and most definitely not reality. The more realistic version is being kicked in the back whilst the large squad of teddy bears your child also bought into your bed attempt to smother you whilst you try and sleep. It means enduring the death breath your little toxic crusader shares with you when they roll over to your side of the bed; I personally swear this is a tactic to ensure they secure maximum bed space.

Your morning shower resembles a day at the zoo with the little people lined up at the glass watching and waiting just in case you try to evade them through the secret passage at the back of the shower.

It means retracing the days of the week to jog your memory on the last location of your hairbrush and in doing so realising it may well have been 6 or 7 days since you actually last brushed your hair, which is probably the main reason your son lovingly refers to your hair as resembling a “dead tree”.

It’s about taking the plunge and booking into that luxury hotel for a much needed night away from your children who have been running you ragged and driving you insane only to find out five minutes after arriving at the hotel that you miss them so much that you don’t think you can cope with being away from them any longer; how does that even work?!

Most importantly it’s about remembering that from here on, silence is no longer golden but more something to be feared, a silent child is often a child up to no good!

In my opinion despite all this Motherhood is most definitely the hardest job you will ever love!

1. You find yourself feeding your child cake with their breakfast, lunch and tea as well as trying to find ways to add cheese, cream and butter in other recipes because they are looking a little on the skinny side, thereby making food that is completely off limits on your weight watchers diet.

2. You find yourself openly telling grown adults to put their hands over their mouth when they cough anywhere near you or your child.

3. Your secondary role next to mother is “poo inspector”. Yes, regularly delving into those stinking nappies to inspect poo, followed promptly by taking a picture so that you can compare it on the consultants poo picture chart.

4. You develop a supernatural ability to hear the sound of your child cough above the crowd of 20,000 thousand screaming 13 year old fans at a Justin Bieber concert.

5.  You become an expert in the pronunciation of weird and wonderful medications such as Ursodeoxycholic Acid and Alpha Tocopheryl and in doing so put some healthcare professionals to shame.

6. You find yourself thankful that your CF child is on permanent antibiotics when you catch him drinking water out of the toilet in a plastic toy cup.

7. You find yourself buying recorders, trumpets, whistles and other noisy toys you would normally avoid because they are good for physio resulting in enduring the painful racket your toddler now produces.

8. A trip to the pharmacy to collect your CFers meds resembles a monthly Tesco food shop which requires assistance from the assistant pharmacist, store security guard, till assistant and store cleaner just to get them to the car.

9. In warm weather you find yourself shamelessly licking your child’s forehead in an attempt to see how salty they are aiding in your decision of whether or not to give extra sodium.

10. When it’s time for clinic and you seriously consider putting rocks in his nappy for some extra weight gain but instead you settle for the McDrive thru stuffing him full of Nuggets and chips ready for the scales.

We’ve all seen one or perhaps know one, the dreaded judgemental mother. Sat staring all disapprovingly at your ability or in some cases inability to parent, whispering about you to the other members of their judgemental mummy group just loud enough so that you can hear them, but not so loud that they could be seen to be rude.

From the moment you start the parenthood journey you are judged, they watch and judge you in pregnancy, poised ready to berate you for sniffing a glass of wine or for nibbling at the blue cheese on the ploughman’s you so thoughtlessly ordered for lunch! My downfall was coffee, I am not ashamed to say I drank caffeine albeit only one cup a day (shhhh don’t tell my midwife, I told her it was decaf!), I don’t believe this makes me a bad person, more a thoughtful person whose soul intention was that of avoiding the bloodshed of anyone stupid enough to cross me in the morning without a caffeine intake, I personally see this as a public service.

You are judged on every aspect, from how choose you to give birth, the “au naturel” mother choosing to go it alone with no intervention in pushing that baby out, to the “Give me every drug you can so I don’t feel a thing” or “sunroof delivery” options. Does it really matter to anyone else how you decide you want to give birth? It shouldn’t, yet you are judged!

As the parent of a child with CF I have been judged many a time, do I care?  Well I would be lying if I said it didn’t hurt or upset me, but I have learned to stick up a middle finger whilst saying “Up yours”. I have overheard the judgemental mothers making comments about Chester’s cough, muttering how irresponsible I am taking my child out while sick, allowing him to be around their children, spreading his germs, whilst they rather unsubtly move their child away.  I have been judged when doing his physio or giving his medicines in public, overhearing comments like “Why would you pump your child full of drugs like that” and “I wonder why she’s hurting him”as if I do it all for fun!

I’ve been judged on what he eats; admittedly he is a bit of an eating machine and will quite happily polish off a 3 fish finger happy meal, with chicken nuggets washed down with a McFlurry and sometimes an added cheese burger, and there I sit judged by the mothers sat watching as they feed their children carrot sticks and apple.

I don’t confess to be the perfect parent, I snap when I’m tired, I use bribery when my children are showing me up in public, especially when saying “No” to the sweets the supermarket marketing whizz placed right next to the checkout results in my 4 year old rolling around the floor in a fit of uncontrollable rage; damn you marketing whizz!

I often threaten to call their Dad when they misbehave and I sometimes let them get away with far too much all in the hope of 5 minutes peace, but one thing I do not do is judge!

If I could say anything to those that stand and judge I would say that not everything is clear cut, as a parent I question myself and my parenting skills every day, I am often laced with guilt and self-criticism for my own actions, for shouting too much or not having enough patience, so I really don’t need it from you as well.  You can never truly understand what others go through on a daily basis in order to survive to fight another day; you will never know their struggles, their ups and downs, high and lows.  Yes, we are all entitled to our own opinions and views on raising our children but just because my views may differ from someone else’s or the way I choose to parent is different it does not make it wrong. Surely we all strive for the same goal? To see our children grow into decent, caring and loving human beings?

So instead of standing there eyes rolling, judging the mother whose child is screaming on the floor in protest to being told “no” to the new toy they have asked for, or the toddler throwing a wobbly at the restaurant table after being told to eat his peas, how about we stand together and congratulate each other on being totally bloody awesome in our own individual ways, marvelling together in the glory of surviving another day of parenting.

I’ve pondered writing a blog for some time, but for one reason or another the time was never quite right and it’s one of those things I put on hold along loosing “baby weight” and training to enter an ironman!

So here I am, the blogging newbie. Wanting to share my life, family and travel stories. I guess I should start by explaining the name choice.

For those of you that don’t know “Embrace the suck” is a military term meaning when the situation is bad, you deal with it. Basically being dealt a shitty hand but picking yourself up, drying your eyes and moving on.

This became very poignant to me in May 2015 when my second small person, Chester was born with a blocked bowel, a condition called Meconium ileus requiring surgery a few days after his birth. This condition is an indicator of Cystic Fibrosis and on 26th May 2015 I joined an elite club and became a CF mum. That was the day CF rudely entered my life, uninvited and most definitely unwanted.

For anyone unfamiliar with Cystic Fibrosis or CF, I’ll explain a little about it, CF is an inherited genetic condition which affects the lungs and the digestive system. I won’t go all scientific on you, but in short it is caused but two faulty genes inherited from each parent. Each CFer is affected with a different level of severity, there is no, one size fits all.

As a parent this was a massive blow, I won’t lie I was and almost two years in still am devastated. My biggest small person, Oakley seems to have been fortunate enough to have dodged the one in four CF bullet unlike Chester.

Chester’s condition has thrown all kinds of curve balls and as a parent second time round, hoping it would be a little easier because I should know what I am doing, I find myself completely clueless most of the time.

I have vowed not to allow Cystic fibrosis to define Chester or us as a family and although it seems to have become a huge part of our lives I will not allow it to take over. We continue with our lives as we did before, the medications and physiotherapy have slotted into our lives and have almost become routine, there are of course some restrictions that CF has placed on us and our activities, but I live by the rule that we don’t know how long we have Chester for so I want him to experience everything a child without CF would experiences without obviously putting him at risk. I guess ultimately if his life were cut short I would want to know I let him experience everything without restriction.

A Life with kids isn’t for the feint hearted at the best of times, it means endless sacrifice and a huge shift in priorities but throw CF into the mix as well and although it becomes slightly more difficult and complicated it is not impossible. There will be tough times, sad times and damn right angry times but that’s where I have learned to “Embrace the suck”.

Each time CF knocks me down I get myself up, dry my eyes and carry on in true military style, for what kind of example would I be setting my children if I didn’t teach them such values.

Life isn’t meant to be easy but I believe I was chosen for this life as I am strong enough to live it and I will spend every last breath battling for Chester’s next breath never taking anything for granted and grabbing every opportunity by the horns.

We never truly know how long we have our children for, so CF or not, live life to the fullest, let children be children, treasure every moment, make memories, laugh and when life throws you a shitty hand, Learn to embrace the suck and remember you got this.