I've never liked the saying "charity begins at home" it gives me a bad feeling, like it's a get out clause for ignoring other peoples needs. Charity has always been something I'm passionate about, I'm a great believer that if you are in the fortunate position to be able to help others then you should! However this is my feelings on the matter and its my personal choice - I don't judge others who don't feel the same way, as my Nanna used to say "it takes all sorts to make a world, and it would be an 'awfy' boring world if we were all the same!
Then something happened, something that shook my world and made me look at things in a completely different light. Now bear with me as this is quite a tale, so pop the kettle on...
Our son was admitted to hospital aged 6, after a very lengthy fight with the GP, I had been taking him practically every month telling them time and time again that he was poorly, they fobbed me off with that word... you know the one... "oh its a virus, it will run its course" I eventually got through to them and they organised an appointment at our local children's hospital.
We arrived at the hospital for what we thought was a general routine once over.... what happened next changed everything.
We spoke to one doctor who suggested a blood test after not liking Callum colour, and we were told to wait in the waiting room as she was going to rush it through. A few hours later we were called back in, there was now 2 doctors in the room, ... now to set the scene I had arrived at the hospital with my mother in tow, along with my daughter, my niece and my nephew, not to mention the fact I was 8 months pregnant! So you can imagine what we looked like. It was my day that I helped look after my niece and nephew and I had thought it was a routine appointment and we would get a letter with some follow up at best. So we genuinely looked like the Clampits had descended on Yorkhill Children's Hospital.
The 2 doctors looked very stern, very official, and VERY serious. I immediately stopped breathing for what felt like an eternity, they said words I didn't hear, I saw them talking, I watched their mouths moving but I couldn't hear them. I was frozen... fear can be seriously debilitating. It wasn't until one of them said "Do you understand what we are saying" that I gave myself a shake and asked them to repeat everything.
Callum was seriously ill, he had little to no iron in his system at all and his blood works were off the chart, the doctors wanted to know why I hadn't, and I quote, "seeked medical attention before now", queue this redheaded Glaswegian momma getting on her soap box about the numerous doctor appointments, practically begging them to take another look at him, only to be told its a virus or that I was neurotic! Once that was explained the doctors seemed to relax a little. They had been ready to accuse me of all sorts I'm sure!
They explained that he was very sick, and would not be leaving the hospital any time soon and that I had to make arrangements, he would undergo numerous tests and procedures and may require surgery to get to the bottom of what was going on. Let me tell you those are words no mother wants to hear, your head immediately goes to that place, the one where you imagine every possible eventuality and none of them are good!
The arrangements were made, the mother, daughter, niece and nephew were collected and attended too, and I took up residence next to what looked like a humongous bed with my tiny baby in the middle of it. IT WAS AWFUL! My husband hurried to the hospital and we sat... we sat for hours and hours. Callum had every test ran, tubes, cannulas, IV lines were inserted, blood transfusions were done ... and all the while my head ran away with me, I imagined every possible scenario.
Eventually my husband had to leave, a nurse brought a z bed for me, and thats where we stayed for weeks, which when your heavily pregnant is no fun let me tell you! Days blurred together, Callum had more tests and exploritory surgery, each day my husband came with our daughter and we sat, cuddled our boy.. and waited!
Then one day our consultant came to see me, Doctor McGrogan was the kind of man that when he spoke you relaxed thankfully, he had a way of talking that just did that. He explained that Callum had what is called Primary Schelorsing Colongitis which to you and me means a chronic lifelong liver disease. He also had Ulcerative Colitis as well as Auto Immune Hepatitis... yes its all a bit of a mouthful.
The bare bones of it are that Callum's liver doesn't function as it should, no-one knows the exact reason why it happens but it did mean that its highly likely that he will need a liver transplant in his childhood. He was going to need continual monitoring, a cocktail of medication and there would be changes to his lifestyle and limitations. The ulcerative colitis is probably what would effect his life more directly as the symptoms for that more obvious, the liver is the scary beast in the background that doesn't show you what its doing till its too late and he needs a transplant - hence the constant monitoring.
What does this have to do with charity you ask?... well Doctor McGrogan arrived that day with a red folder, a folder full to bursting with leaflets, pamphlets, business cards.. all manor of information I was supposed to just digest and come to terms with. One of the leaflets was from CLDF, the Chidrens Liver disease Foundation, a charity aimed at helping children and families suffering from liver disease come to terms with diagnosis and to help them live a happy fulfilling life. I still have that leaflet with the contact number today.
Callum spent a few more weeks in hospital till we stabilised his conditions, we were finally discharged with a team of nurses to hand, a number to call if any of a list of symptoms arose while we were home, and a date to come to clinic a few days later, but more so Doctor McGrogan wanted rid of me! He demanded I go home and give birth as I was now overdue and looking like I may very well give birth in Callums room any minute and in his words "I'm not equipped for that here, the maternity hospital is the other side of the city" so we left, and on the drive home I sobbed, for the first time since admission I sobbed so hard Callum woke up from his doze to check I was ok.
Since then I can't tell you how many times I've spoken to someone at CLDF, we have been to fun days arranged by them for Callum to meet other "wee troopers" just like him, we have met parents that understand what a 'Calprotectin level' is, and have no problem happily chatting away about stool samples and iron infusions. All because of CLDF. Now don't get me wrong I can't fault Yorkhill Children Hospital for the level of care Callum receives, his nurses and consultants are amazing! You won't meet nicer more caring human beings... but what CLDF brings is normality, they make a life that seems unreal, not normal, too much to handle, and they make it bearable.
So getting back to why I wrote this blog post in the first place - Callum is a very loving, very charitable wee boy. Some of you who know him will know of the charity work he decided to do himself when he was just 5 after doing the race for life at school, he asked me to help him "raise pennies for the sick people" and he started making his own polymer clay hooks and buttons to sell and raise money - but thats a blog post for another day... well this time he asked to dye yarn and sell that for charity so of course CLDF came to mind and the "Cherubs Collection" was born.
We have three children, Callum (now 9) our wonderful Kayla-May (7) and for those of you wondering I did give birth before that clinic appointment and we had our beautiful Isabella (now aged 3) all of the 'cherubs' as I like to call them play a very active part in the business, Isabella comes to the studio with me 2 days a week, and the other two are there just as often after school and on weekends. We are very family driven. So the 'Cherubs Collection' is yarn they have dyed themselves, they pick the colours, the dye technique they want to do and then they dye a small batch as and when they can... don't worry they are constantly supervised and momma is there to ensure quality control and obviously their safety at all times.
All proceeds from the batches of their collection that they dye goes to CLDF. Its our way of giving back...
Getting back to the saying I said I never liked "Charity begins at home" that saying now takes on a whole new meaning for me - it literally does begin at home for us! If you had asked me if I had given any thought to being on the donor list for instance I would have said "well I have a donor card" but now its oh so more important because it directly effects us, so now I plead with people who say they haven't thought about it, to please please do... it takes 5 minutes online to register but you could save numerous lives by doing so! One day Callum will probably need a new liver, thats a thought we push to the back of our mind and we choose to live for today, but when that day comes we can only hope that one is available... but if people haven't registered then that possibility gets smaller and smaller... 5 minutes, its quicker than waiting in line for a costa coffee... think about it folks.
You can sign up here: www.organdonation.nhs.uk.
I'll leave it there as I have prattled on for too long as it is, so if you managed to read it all well done! I know it was a long one.
Take care and happy hooking,
Love Lisa - and the Cherubs of course ;)