Bye 2019

January 2020 Bye 2019Welcome 2020 - please be nicer to me than 2019. 2019 wasn't my favourite year. Nope! Very busy "medically", very challenging logistically and mentally difficult at times. My husbands cancer treatment and battle took over,  or I might say it overshadowed all other family life. But also big news and changes in S.'s life and routine. In May, after two long years, we got to go to the urologist and as outcome of this meeting, in July she had another cystoscopy (to read about this procedure have a look at Wikipedia). This time was with attempt to remove the debris that sits in S. bladder for over 2 years. Mr Cascio was confident he can remove it. Before S. was admitted to hospital we did ultrasound and…
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Happy 7th birthday to my little princess

S. turned 7.  Like every other year – super emotional. From the moment I opened my eyes I was thinking about this very same day 7 years ago. I don't think this will ever change. Can't believe its already 7 years since she arrived in such a hurry. 7 years since I got in shock and didn't know what a life will look like tomorrow – never mind in years.  But we are here. 7 years since dramatic arrival and all the scary moments that follows... (If you are here for the very first time – you can read about it at the very start of this blog in “Our story section”). What is our life like now? Life is good. S. is an amazing young girl. Sometimes it feels like…
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Marathon for Cliona’s 2019

Marathon for Cliona's 2019Last year I took part in Woman's Mini Marathon and raised 1180€. My target was to get as much as last year (1180€) so I'm very happy. Last two months of 2018 and all 2019 until now has been a tough few months and to be honest I was highly unmotivated to do the marathon this year. Just had no energy for it. But I kept thinking about Cliona's Foundation, how much amazing work they do to support families like us. From my own experience I know how hard it is when your family member is in hospital, and how hard it is to keep it going financially. So I decided to get up and started collecting money. I kept asking everyone I know for money (including neighbours, a bus driver…
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CAREGIVER BURNOUT

A caregiver is anyone who provides help to another person in need, such as an ill spouse or partner, a disabled child, or an aging relative. However, family members who are actively caring for an older adult often don't self-identify as a "caregiver." Recognizing this role can help caregivers receive the support they need. It doesn’t take a psychology degree to understand that caring for someone else can involve high amounts of stress. Caring for a loved one strains even the most resilient people.  Like I said, it seems obvious that caring for a loved one is stressful, but it took me a while to recognise this. Here is my take on it and hopefully it will help you to be aware of it too. I am a full time carer…
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Happy Mothers Day

Tonight S. was upset. Her dad was getting her ready to sleep while at the same time I was with her brother, after very long day.It was a long day preceded sleepless night, as S. brother wasn't well.If you ask any mum, she will tell you - sleep deprivation is the worst TORTURE. Especially when you have to get up next day, or I should say hours after your child finally fall asleep, but for various reasons you can't sleep in for longer.In my case, it's morning and have to get older sister ready for school. All you want to do is just put your head down on the pillow but you can't. Or maybe you did but it was only 3 hours and it's not enough to be your…
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New year resolutions

New year we (S.) welcomed with UTI. After 6 months break from infection she got one just before Christmas and finished antibiotics on Christmas Day. As usual urine was cleared 24 hours after, but 48 hours since last dose, urine was very cloudy and smelly. Typical. But she was in a good form. Then on the 31st of December S. woke up at 3 a.m. vomiting with fever 39C. It was bad. At 4 am I thought we gonna end up in emergency department. But in between vomits I sent an email to renal clinic, described current situation, asking them to contact me ASAP. And they did! our amazing nephrologist Dr Lewis rang me at 8 a.m. and after a short chat he decided  there is no need to bring S. to hospital and based  on…
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Pass it on.

It's 7 day until Christmas as I'm writing these words. I'm feeling festive and today I truly got into Christmas spirit today. I'm blown by kindnesses and good energy we received.  Today was a very special day for our family. S. had the honour to be princess of “OPERATION SNOWBALL". She got to cut the ribbon an open the event that was the final of a great initiative.But before she did it, she was collected from home by a limousine with a handsome chauffeur and a very special guest on the board... SANTA!!! So overwhelming! I can't find good enough words to describe the joy. Not only for S. but for all of us, S. dad, brother and myself.After receiving a gift from Santa, a photo shoot with him, listening Christmas…
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“I WANNA BE NORMAL LIKE EVERYONE ELSE”

What does normal mean? Did you ever think of it? I didn't but subconsciously I never liked this word. Rebellious as teenager - try avoid to be like everyone else - loved punk rock ;) I think is best to start off by explaining what the world believes “normal means”. I look it up the word NORMAL by Collins dictionary: “normal in American- adjective 1. conforming with or constituting an accepted standard, model, or pattern; esp., corresponding to the median or average of a large group in type, appearance, achievement, function, development, etc.; natural; usual; standard; regular. 2. Biology: occurring naturally  normal immunity (...) Medicine and Psychology a. free from disease, disorder, or malformation; specif., average in intelligence or development b. mentally sound SYNONYMY NOTE:normal implies conformity with the established norm or standard for its kind [normalintelligence]; regular implies conformity with the prescribed rule or accepted pattern for its kind [the regular working day]; typical applies to that which has the representative characteristics of its…
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Get off the couch – Mini Marathon for Cliona’s Foundation

Just before we enter the summer I took a part in VHI Womans Mini Marathon. Last time I did it was 3 years ago for https://www.cloaca.eu/marathon-for-cliona/ and with help of my wonderful girls we raised €1118!! Since then I was pregnant with S. brother and then he was a newborn so I couldn't do it. This year I decided to get my act together and take a part in the Mini Marathon again to raise some money for Cliona's. The idea of Womans Mini Marathon is to raise funds for chosen charity/ foundation and to challenge your self to get off the couch and walk, jog or run. I wont lie to you, I'm not a runner. I'm a fast walker. At least that's what I thought. I walk every day to school etc,…
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Happy 6th Birthday

I can't believe its already a year since last birthday post (https://www.cloaca.eu/huge-milestone/ ). What a busy and eventful year that was. S. started big school. She's so strong and brave. It took her 4 months to get used to her carer in school, to build a relationship and trust her to catheterize her (thank you Catherine for amazing support and helping that to happen). She took part in a school play, Goldilocks and three bears as Mama bear. I couldn't be more proud. Quiet and shy in new situations, she flourished on stage. S. gave up dance class but started tennis lessons. With school and between play dates there isn't much time for more after school activities. (https://www.cloaca.eu/social-life-5-year-old/). In school report for the end of the year I read : “S. has adapted…
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