Tag Archive for: family

Letter to my children

Hey bambinos,

It’s momma here, I thought I would pen you a note as you are all old enough to spend your days with your noses stuck to a phone/ipad/laptop and I know you sneak a peek at So Bad Ass from time to time.

Firstly (and always), mannnnn I love you guys so much.  Like, my heart swells and twists and pumps a little harder when I think about you.  You are my three proudest achievements, nothing I can do in my life will ever surpass the pride I feel when I know that a little bit of me and a little bit of dad managed to make these three human beings that are as mind blowingly awesome as you.

People talk about how I have coped with the past few years, all the surgeries, the hospital stays and the life changing additions and subtractions and I think they forget that you guys have been through it all too.  My heart breaks when I think about how my illness has hurt you all.  I am truly sorry that this has happened to us all, if I could have hidden it from you, I would.  I can never give you back the past few years and all the time we have lost with me in bed, I can’t replace the time you have spent visiting me in hospital, the hours that slipped away as I rest and heal and sleep.

sam cleasby family parent mother blogger

But I can thank you for it.  Bambinos, you are the best.  Thank you, thank you, thank you.

Thank you for taking everything on board, for being accepting and loving and caring.

Thank you for asking hilariously awkward questions about my stoma and butt (never stop!)

Thank you for not being embarrassed of me (even when your friends saw a photo of me in my knickers on the internet)

Thank you for the endless cups of tea.

Thank you for the hugs.  Every one healed me a little faster.

Thank you for bringing your friends to see me in my sick bed at home and not being ashamed of me.

Thank you for giving up your free time to sit in bed with me watching terrible TV.

Thank you for making me laugh (even when it hurts my stitches) you three are the funniest human beings in the world.

Thank you for understanding.

Thank you for being you, you weird, bizarre, ridiculous, smart, funny, wonderful babies.

Thank you.  Thank you.  Thank you.

I wish none of this had happened and that we could just be a normal, happy family, but I can’t change it and I just have to hope that we can gain some positive things from it all.  I know we are closer as a family, I know that your relationships with your dad have deepened so much and when I see you all together, it makes me smile.

I hope this situation has made you more open minded and accepting, I hope it has taught you patience and care and a knowledge to not judge a book by it’s cover.  I hope you are tougher for coming through the past few years and that you will learn to be more resilient, stronger and always try to find the silver lining in any situation.  (Even if that silver lining is a terrible joke, a meme about llamas or a memory of a good time).

It means so much to me that my bag doesn’t frighten or upset you, I know it was a shock in the early days, but I am so glad that you fully accept my ileostomy bag for what it is, a life saver.  After surgery, when you were all a little scared to come to close incase you hurt me, it shook me, I worried you would never want to hug me again, now I love the fact that you barely think about my bag and aren’t afraid to touch it, talk about it and even warm your hands on a very cold nighttime walk on it!! (Hahaha)

I want you to know that I am so proud of you all and the way that you have dealt with everything.  I know it was really scary that I had to go in to hospital again and it wasn’t nice to visit me and see all those tubes and wires everywhere, I know it was frightening when I wasn’t really with it because of all the medication.  You guys were awesome though, you made me laugh when you wore the sick bowls as hats and made me wear one too.  You brought me joy in those rubbish days when all I wanted was to be at home and every time I saw your faces, it reminded me to get strong quickly so I could get home to you all.

children and chronic illness ibd surgery

My bambinos, I know the past couple of months have been tough as hell.  Between my surgery and recovery, our bereavement, mine and dad’s work, your school life and the most stressful house move known to man (we’re nearly there, I promise!!!), it has been really hard and I know you have all been freaking out.  It makes me feel guilty to know you guys are stressed, I feel it is my job as a mum to protect you from stress, but unfortunately this is life and it’s a learning process for you to know that bad stuff happens, yup, even to good people.  But that’s ok.

You don’t appreciate the great times without lulls of crapness, we have had more than our fair share of crap times, I know.  But we also have something really special, we have us.  Our family is awesome, me, dad and you three flipping rock, we are just the best and we have to celebrate that.

Let’s hope that after a bad start to the year, 2016 will be beautiful.  I’m looking forward to our new home, to working in the allotment with you all, to parties and big dinners with the people we love, to your aunty, uncle and cousin visiting us from Australia, to a weekend in Manchester watching the Stone Roses, to visits to London, to galleries and exhibitions, walks in the park and cuddles on the sofa, to visits from nan and a house full of your friends, to hot tubs in the summer and ridiculous gatherings of our silly friends and especially to our family road trip to America!!

sam cleasby mum parent blogger

The thing I look forward to the most is seeing you lot grow and thrive, you are all getting so grown up and it is scary to think that you aren’t babies any more.  Two of you are teens and one will start secondary school this year!! You are all dealing with your own struggles, and bambinos, I know it is SO HARD! You are filled with hormones and emotion and are learning who you are as people, you are becoming the best young men and women that I have ever met.  Dad and I may be tough on you, we nag about work ethics and housework, manners and respect, it is only because we love you more than anything and we can see how close that horizon of adulthood is to you.  We can see it nearing day by day that in no time at all you will be leaving school, going to uni, travelling the world and leaving home.

But let’s not rush it eh? Let’s enjoy our time together because after all the s**t (yes, mum swore) we have been through, we deserve something good.

I love you bambinos

 

Mum x

It’s been a while… The bag is back

Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!

So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.

I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total!  The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously.  I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!

So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.

I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!

I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!



The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure.  I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube.  I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.


Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.

So what did they do?

My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely.  They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!

He then formed an end ileostomy, this Stoma is on my right side and is permenant.  So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.

I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin.  This is painful and when I stand, it feels like everything is going to fall out!  The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week.  Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.

Then there’s the new Stoma.

I am struggling. Mentally and physically.

Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick.  The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.

This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak.  The leaks are soul destroying.  There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.

I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.

I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it.  I’m not.

I don’t feel ready.  I change my bag but I hate seeing it, looking at it, touching it.  I wish I could ignore it completely.  I know this isn’t my usual happy and positive stance but it’s important that I’m honest.  And honestly, I feel sad, angry and frustrated.

It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag.  I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.

It’s early days though. I’ll learn to accept this and adapt to my new life.  You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.

After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all.  I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.

grandfather and granddaughter

So I am home and recovering.  I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal.  It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family.  Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days.  They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic.  I couldn’t thank them more, they are both brilliant.

You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op.  We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles.  We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me.  Honestly, I am humbled, thank you to every one of you.

I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.

And so now I am just at the stage of resting, recovering, nurse visits and healing.  I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable.  It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to.  We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.

But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off.  During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!

 

Sam xxx

Dear Santa,

Hey there big man, I thought I’d better jot down a quick note to say hi.  It’s that time of year again so I know your inundated but here’s what I’d like for Christmas.

My first wish was going to be for me to have no surgeries in 2016, but this damn illness of mine has scuppered that already and I’m going in January for a biggie!

They’re removing my Jpouch and creating a permanent ostomy. Some people might wish for Barbies at chrimbo, me? I’m getting a Barbie Butt.

barbie butt permanent ostomy

They’re going to remove everything and give me a new stoma, as well as sorting the other issues caused by all this illness.

It’s a long and complicated surgery, so Father Christmas, can I ask to come through it safely.  I’m scared you see and I just want to know that I’ll be ok and come home to my babies.

It would be nice if I had no other operations next year too, if you can manage it.

I’d also like to ask for an easier time in general. This year has been tough, I’ve been ill a lot and I hate the pressure it puts in my husband and kids.  They deserve a wife and mum who isn’t always ill, tired or in bed.

Whilst you’re at it, keep them healthy, happy and ridiculously weird.  They’re my favourite people in the world and I want to see them smile more.

family days out sheffield

Please let this surgery work. I just want to be well and not exhausted. I don’t think it’s too much to ask at 34 if you could stop me crapping myself.  I just want to be normal.  Not too normal!! I just don’t want to be sick any more.

Better treatments and a cure would be good too! Crohn’s and Colitis UK are doing well but a little festive, magical boost wouldn’t go amiss!

Help me to deal with all the new year is bringing me. I know I’ve had an ostomy before but this is all so permanent and to be honest, I’m scared I’m not going to deal with it very well. A sprinkling of bravery from you would help.

sam cleasby parenting blogger fathers self esteem

Santa, please bring me the courage to keep speaking out. Give me the ability to help others who are struggling and be a beacon of confidence, weirdness and hope for those following my footsteps with shitty chronic illness. Help me to carry on being The Poo Lady with pride.

I may not have been all good this year, but fingers crossed, I am still on the nice list!
Sam xx

I’m not sorry

My name is Sam Cleasby and I am not sorry.

I apologise constantly, I say sorry to people who bump into me in the street, I say “sorry to bother you” to people who serve me in shops, I apologise to the postman if I don’t get to the door immediately.  If I am offended by someones behaviour, I end up apologising for being over sensitive.  I even said sorry to the dog this morning.

I spend a large amount of my days saying sorry for things that I have no need to apologise for and that needs to stop.  I think it is a throwback to a Catholic upbringing filled with guilt or perhaps that I hate for people to dislike me, though I am learning to deal with it, I don’t like conflict, I have a fear of making others angry.

 

I grew up feeling quite insecure, I worried constantly about what others thought of me, worried that I wasn’t enough and maybe I always felt I have to apologise for my mere existence. So I say sorry.  A lot.

apologising too much

I hate that I apologise so much but it has become a kind of verbal tic, it comes out of my mouth before I even realise it.  It’s funny as I am a reasonably confident person yet the part of me that doesn’t feel enough comes sneaking out all too often.  And it’s not just me, according to a YouGov study a third of British people feel they apologise too much.

Saying sorry when you are in the wrong is the right thing to do and I am all about good manners but when you over apologise, it can give others the impression that you are not confident, are weak and easy to walk over.  Beverly Engel, a psychotherapist and the author of The Power of the Apology talks about how over-apologising can send a message that you’re ineffectual and have low self-esteem, she says “It can give a certain kind of person permission to treat you poorly, or even abuse you.”

 

I strongly believe that when you are in the wrong, an acceptance of your fault and a true, heartfelt apology goes a long, long way.  I have a real problem with people who don’t accept responsibility in their lives, those who think the world owes them a favour, I grew up with people like that, those whose favourite words are “it’s alright for you”.  People who no matter what, believe they are in the right.  And those people suck.  This isn’t about never saying sorry, just only saying sorry when we really are!

I am making a stand for myself and I am going to stop being such a walk over, I have always let things slide or apologised even when I am not in the wrong and I have had enough.  I am done with the people who treat me badly, done with saying sorry when I have done nothing wrong.  The next time someone bumps into me in the street I will not say sorry.  The next time someone upsets me, I won’t apologise for my feelings.

I have been through so much in the past few years with my health that I realise I need to start to care more about myself.  I need to put me first a lot more, I need to cut those who have hurt me, who don’t care about me, out of my life and I need to not say sorry for just being myself.  What my illness has taught me is that life is short, you don’t know how long you have on this Earth and so we need to live every moment to the fullest.  That means celebrating your time with people who bring love, joy and happiness into your life and not apologising for your existence.

My name is Sam Cleasby and I am not sorry.

Distance

Apologies for not being about much over the past few weeks, as much as i adore blogging and writing for So Bad Ass, as a mum of three I have to ensure bills can get paid and and so I have been super busy with other work.  It has been pretty lovely work though I have to say! I have been working as an artist for arts group Responsible Fishing UK running their creative workshops at Haven sites all over the UK, the project is called Camp Cardboard and entails hundreds of cardboard boxes and working with kids to transform huge spaces into giant dens/castles/boats/zoos/FBI headquarters/shops/homes/prisons, basically anything the children can imagine!  It has been brilliant fun but has meant quite a bit of time away from home, Timm and the kids.

My husband Timm is a director for Sheffield music festival Tramlines, which means that his summer has been jam packed with preparation and running of the event.  These things mean that our kids have been super busy and passed between the two of us as we attempted to resolve all childcare over the summer holidays.  We are ever so lucky that all our jobs are freelance, versatile and child friendly and on most occasions they can come along with one of us.  I am ever grateful to my mum who picks up the slack when we can’t make it work.

sam cleasby mum parent blogger

And so I suppose today’s post is about distance, both a physical distance and an emotional one.  Timm and I both have what we laughingly call Portfolio Careers, this basically means we are both freelance and work our butts off at any job that comes in! Timm is a photographer, he runs Responsible Fishing arts group, he is both director and main stage organiser at Tramlines and he teaches at a university for their Music Industry course.  I write for publications and websites, work for RF, help run the photography business, do public speaking and I am writing a book!  This makes for crazy scheduling but it does mean that we both work from home and both have time with our children and eachother.  Honestly, we would both like it to calm down some, the manic diary planning and time away from each other is hard going and we would both like a little more time.

I am not complaining.  Two years ago when I had my first surgery I couldn’t imagine how life could be something good, I was so low, so physically and emotionally broken.  I felt like I was in a black hole.  And so for now to have the physical ability to be working and traveling and doing things that I love, it is a real blessing.

love letter to yourself ileostomy jpouch ibd self happiness

The events of my life have made me a pretty tough cookie, yet I realise that my emotional strength relies very much on a connection with my husband.  I can get through ANYTHING as long as I have him with me in my heart.  I know this sounds so corny and feel free to make vomiting noises whilst you read, but after everything we have been through, our relationship has just solidified, our bond is so firm now and the connection between us is better than ever before.

So when we have weeks on end where one of us is working away, when the free days are spent heaping time and love on the kids as we deal with the working parent guilt, when we both have so much on our plates, it is so easy to feel distant and alone.  We have had lots of day to day stresses of late, cars breaking down magnificently, bills to be paid, plans to be laid and so time has been spent on all those rubbish grown up things.  The physical distance is one thing, but we have both had an emotional distance too as we both just try and wade through all our work load.

Through writing my book, I am churning up lots of feelings and emotions about my past, I feel quite fragile right now as all these events from my past come floating up to the surface and I have to deal with them all over again and this is really adding to my anxiety levels.  I am so chuffed to be writing the book, but I had not planned at all for this tsunami of feelings that it would bring with it!

Last week we finally got time to sit down and have a proper chat, we both talked about how little we have seen one another and how we felt we hadn’t connected properly for weeks. (Not a euphemism!!) Isn’t it amazing how a good talk can make everything feel a million times better?  The darkness and anxiety I was going through lifted immediately when I was with my boy, my shoulders raised and my head cleared when we had the time to discuss all that was going on.  Life just feels better.

rock n roll wedding

It is so easy to get caught up in life.  In all that adult, grown up crap that none of us really want to be dealing with but we just have to.  It is so easy to get into a rut, to go day in, day out in a monotonous grey drabness.  It is so easy to get so deep into your work that you forget to look up and see the colours around you.  So this week, take a moment, look around you at the people who matter.  Go for a walk with your kids, have a nice meal with your partner, go out with your friends.  Do something to reconnect with the most important people in your life, do something to close the distance that the boring stuff causes.

This week, go do something beautiful with someone wonderful.

 

 

Sam xxx

 

 

Happy Anniversary

Today is our 11th wedding anniversary!

We married in Las Vegas in 2004 and renewed our wedding vows last year and I couldn’t be happier.

Life isn’t always plain sailing and we have had our moments of struggle, but we came through everything stronger than before and that Cleasby bloke and I, when we are together, we are a force to be reckoned with.

Over the last 2 years of surgeries, recovery and change, Timm has been my rock. The one person I can tell it all to, the one to hold my hand, to make it all better and to love me harder than ever before. He became my carer for a while and did it with love, sensitivity and respect.

sam cleasby timm cleasby

People tell me I am strong. But I am only strong because Timm is my roots, he holds me tall and supports my growth.

When life is good, he walks by my side, both of us smiling into the sun. But sometimes life just gets so heavy, my shoulders aren’t broad enough to carry the weight, that is when he steps in and scoops me up. When I need him to, he will carry the weight of both of us and does so with a smile. Then as it gets easier, he sets me down and we carry on our path together.

 

 

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I just hope that when he needs me, I will carry him in the same way.

Happy anniversary to my favourite person in the whole world.

Sam x

Happy Birthday Timm

It’s my boy’s birthday today and I just wanted to tell my amazing husband that he is awesome.

Happy happy birthday to the best bloke in the world, he is my hero and I just couldn’t have got through the last 2 years without him.

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Timm supports this blog and all my campaigns wholeheartedly with advice, help and of course his amazing photography.

He is just so inspiring, he is the hardest working person I know, he is a bloody wonderful dad and Charlie, Ellie, Thom and I couldn’t love him more.

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Happy Birthday Timm!

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Love Sam x

My boy is raising money for Crohns and Colitis UK

My youngest son Thom is 10 and has beautiful long hair that he has been growing for a few years.  He has decided to raise money for Crohns and Colitis UK by cutting all his hair really short!

I have Ulcerative Colitis and in 2013 I had a colectomy and ileostomy, in 2014 I had more surgery to form a J-Pouch.  It has been a really difficult few years and as family we have had a lot to deal with.

A chronic illness doesn’t just affect the person who is ill, the ripples spread through the family and friends and my children have had a stressful and upsetting time seeing me go through surgeries and treatment.  I am so proud of the way they have dealt with it all and couldn’t be happier that Thom has decided to raise some money for CCUK.

Crohns and Colitis UK provide advice, support and help to the almost 300,000 people in the UK with IBD – they are a great charity and we are pleased to raise money for them.

crohns and colitis uk

 

A message from Thom

Please donate some money because my mum has suffered with lots of pain with her surgeries.  It’s been very hard for me because I didn’t get to see her much and when I did she was feeling ill and it made me sad.

Im cutting off my long hair to raise some money for the charity that helped my mum so they can help lots of other people too.

Love Thom x”

 

sam cleasby mum parenting blog

 

He is hoping to raise £100 and so please head over to his Just Giving page now and give what you can!

 

Sam xxx

Chronic Illness and Parenting – am I a shit mum because of my shit disease?

I’ve been thinking a lot about how my illness has affected my children and the relationship between us. I have three kids and every day they amaze me with their intelligence, kindness, character and awesomeness.

Till 2010 my husband’s job took him away from home for up to nine months of the year. So my kids (born 2000, 2003 and 2005) and I were this super close gang. The four of us were together all the time and though, of course Timm was a huge part of all our lives, it often felt like I was a single parent.

Even when my Ulcerative Colitis was bad, we would still be this team as we had no other choice! We had help from my mum, sister and friends but we got through it together. The kids didn’t really understand, which I’m glad of. They just knew that sometimes I was poorly and we would have film nights where we all slept in one bed and hung out. It meant I could rest and know they were are safe with me.

Timm stopped working away in 2010 and it changed our family massively and for the better. The kids loved him being at home and we started our photography business together. It made all our lives better.

When I was at my sickest in August 2013, I thanked my lucky stars that his job meant he was home to care for the children and give them the support they needed. I had a few weeks in hospital and then came home without a colon but with an added ileostomy bag. They had been so worried whilst I was in hospital and their concerns upset me. I hated that my illness was making them so sad.

Then when I got home, my bag and scars, the staples holding my body together, my tiredness and weakness scared them. They became afraid to hug me. Fearful they would hurt me. And to this day, though totally understandable, it is the toughest thing I’ve gone through. My babies being too afraid to hug me.

Fastforward eighteen months and they’ve learnt so much. My second surgery took away my bag and replaced it with my Jpouch. Though they knew more, and were less freaked out this time, they suddenly had to learn to live with a mum, who once again would run out of the room to dash to the toilet. Who couldn’t eat certain foods, who takes medication that cause drowsiness.

sam cleasby mother parenting

This journey I have been on has been tough on me, but my kids have been through it too. They’ve had to see their mum disappear onto hospital wards for weeks at a time. They all freak out when I have even a scheduled clinic visit now, terrified I won’t come home for weeks. They have had to learn so much and I truly believe that though it’s tough, and I wish they didn’t have to go through it, that they’ve come away as more empathetic, kinder, more open humans.

The problem with chronic illness is that it isn’t about a few weeks and then life going back to ‘normal’, the illness IS life and it’s learning to reassess how you live this odd life that you never planned for.

Currently I have awful fatigue, sleep problems, anxiety, pain, toilet and diet issues. I take high dose codiene every day that make me drowsy. I struggle to wake before 9am. I know I am tetchy, self absorbed, distant and sometimes just absent.

The kids have had to lean on Timm both emotionally and physically. This isn’t a bad thing, he’s their dad!! But for me, it’s a struggle to see him take over all my roles. This is such a selfish thing to say. The kids are fine and so is Timm, so much so that I occasionally doubt whether I’m necessary at all!!

sam cleasby mum parenting blog

This is selfish and all a bit me, me, me, but I’m just going to blurt it out anyway…

It hurts that they go to their dad instead of me. It hurts that they want him to do bedtimes, it hurts to know they ask him for advice instead of me. It hurts to feel left out. It hurts to feel my illness is a barrier between us.

I’m scared they’ll think I don’t care. I’m scared they think I’m lazy. I’m scared that when my head is so full of my own pain, anxiety and distress that they will think I wouldn’t drop it all in a second for their needs. I’m scared they won’t need me anymore.

See, told you it was selfish!!!

Because when I put my brain into gear and tell my heart to shut up, I am so proud of my family! I’m so happy to see Timm having this amazing bond with the kids that he missed out on when they were small. I’m proud to see them growing into confident, self assured, wonderful young people.

When I see that Timm has learnt to plait hair because I can’t function in the mornings and Ellie needs help, my heart swells. When Thom tells his teacher that it’s daddy who helps him with all his homework, I thank the day he stopped touring. When Charlie has an awe inspiring role model of a dad in his life, I am thankful and blessed.

Don’t get me wrong, they aren’t angels, and my illness makes me blame myself whenever one of them does something wrong. I can’t help but think that if only I was more present and full in their lives at the moment, that they wouldn’t have made that mistake.

sam cleasby mum parenting blog

When I tell them off and perhaps shout a little louder than necessary because I’m in pain. Or I’m too short with them because I’m desperate to go to the loo. Or when I’m distant and perhaps seem cold because I haven’t slept a full night for two years and I’m so exhausted I could drop. All those things swirl through my head for days, just worrying me that their childhoods are being scarred by my illness.

I just hope that they understand that my illness has played a big part of all our lives, but that I have always loved them, that they are always the first thing I think of in the morning and the last thing before I sleep, that they are the best things I ever did and always will be.

I hope one day I can explain to them that I wish it could be different, that being ill is tough but feeling like I fail them is tougher.  I hope they will know how much they mean to me.

And that I’m sorry that there were times that my illness may have hidden these truths from them.

Sam xx

 

 

 

2014 – what a year!

What a year! I started 2014 in Sydney with my sister and our families, we travelled up the coast and had an epic road trip.  It has also brought me a hernia, a house move, surgery to create my jpouch, a couple of weeks in hospital, a new life learning to live without my colon or ileostomy bag and one more hernia!

I have been on the radio a few times, done talks all over the UK, hit my 100K views on So Bad Ass (now up to 160K) and started a writing course.  I also visited my aunty and uncle in Spain and honeymooned in Lanzarote with Timm  I made a new friend who has a stoma… we made friends because we have no colons but stayed friends because we are awesome and he makes me laugh in a rather unladylike fashion and knows, like really knows…  I made new friends without stomas who I now feel like I have known forever and I hung out with so many old friends who made every tough part of my year easier and every lovely part of my year happier.

We bought a hot tub, I got a big tattoo, I met Chuck D and Flavor Flav, went on a nudist beach and my sister came over to the UK to visit with her family.

I renewed my wedding vows to the best husband in the whole world in the BEST WEDDING EVER surrounded by all my absolute favourite people and married by one of my best friends Violet.

2014 has had it’s ups and downs.  The wedding was amazing, it was just the most beautiful and perfect day and to get to marry my perfect bloke for the second time was the best thing ever and my total highlight of the year.

The surgery was tough, 10 days in hospital after a long, difficult surgery and now 7 months later I am still recovering and learning how to deal with my jpouch.  The past 18 months have been the toughest of my life.  Being so ill and having life changing surgeries have been at times almost too much to bear, there were times when I felt so low, so broken and in so much pain that I just didn’t know how I would cope.

I learnt that coping is the only option.  Every day, no matter how hard it is, you have to just keep plodding, just keep swimming, just keep going… Having fantastic people around you helps and I am lucky enough to have some of the best.  My amazing husband, family and friends make it all bearable in those dark moments and I can’t thank them enough.

This year has seen So Bad Ass turn from a small personal blog into something that is read all over the world and (hopefully) helps people.  All I ever wanted from this blog is to make a difference to other people, to use my pain and my journey to help other people with IBD, to use it to raise awareness, raise money for Crohns and Colitis UK and to help people everywhere to have better self esteem, body confidence and to love themselves.

You are all amazing and I thank you from the bottom of my heart for every read, every like, every tweet, every share, every kind word.  You are awesome!

Enjoy and I will see you in 2015!

 

xx

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Thanks again for an amazing year, if you fancy doing something wonderful please go to my Just Giving page and give whatever you can to Crohns and Colitis UK.

 

Have an amazing christmas and a brilliant New Year!

 

See you in 2015

 

Sam xxx

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