Tuesday, 10 October 2017

I'm one of those people who make a decision,  having thought it through, and think I've made the right one.  I convince myself I have. And then once the decision is firmly made, and I think I'm at peace with it, another perspective crashes it's way in and makes me see another side that I didn't see before. And all of a sudden I've done a complete 180 and am seeing things completely different. So I'm reneging.

My last post was supposed to be just that - the last post. But over the last few months since I finished, I've realised how much I need to write. It's a coping mechanism. As I said in that very post, without this blog I wouldn't be where I am today. And so I thought, maybe I can still write.
I still feel that it is Olive's story to tell from now - she's 5 now, she's much more independent, it's her life, her journey....but golly gosh, she's still so little - maybe it's still partly mine too? Right now, her life is my life (actually I don't think that ever changes with your children!) and I WANT to write about her, about the big kids, about our family. So, bugger it, I'm gonna!

This year has been tough for our family. Mainly because of me, which makes me feel extreme guilt even though it's beyond my control.  In an earlier post in the year I mentioned pain episodes I was having. It got to the point where it was daily and I would spend most of the day in bed, only just making it out to drop off the kids or pick them up. I barely ate,  I lost almost 10 kgs and I was fatigued beyond description. Finally, after a multitude of invasive tests and procedures, I was diagnosed with crohns disease. Crohns disease is one of the more common inflammatory bowel diseases. It is an autoimmune disease thst causes inflammation and ulceration in your digestive tract - anywhere from mouth to the other end. Mine is 8-10cm affected in the terminal ileum - the narrowest part of the small intestine, at the end where it meets the large intestine.
Crohns patients suffer from a huge range of symptoms - pain, diarrhea,  fatigue,  weight loss - as well as many extraintestinal  (outside of the affected area) symptoms. It affects your bones, your muscles, your mental health, just to mention a few.
There is no cure. Patients go through periods of flares and remission and the aim is basically to get them into remission and improve their quality of life.
At the moment I am on immunosuppressants and a mild anti inflammatory specifically for the gut. I've been classed as in remission for the last 2-3 months but still suffer from daily discomfort and pain. A recent test just this week showed I still have a moderate level of inflammation and the pain episodes have been coming back. It is trial and error finding what medication suits what patient because each person reacts very differently. And each medication comes with its own set of risks and side effects.

I'm not telling you all this to feel sorry for me. For the most part, I think I cope ok. I do what needs to be done and try to get the rest my body is telling me it needs.  But that all comes with guilt, because my kids are so young. They shouldn't have to deal with a mother who is unwell. They shouldn't have to be stuck at home all holidays because I've put a rib out (another story, but seems to be related to the crohns). They shouldn't have to worry. Sometimes I get emails or texts from Jaxon or Meisha while they're at school, asking if I'm ok today. While it makes me smile that they're thinking of their dear old mum, it makes me sad that they have to.
In all of this though,  I feel lucky. I feel lucky that I got to have my kids before I developed this awful disease. Some people are so unwell with it they still have to rely on their own parents at my age. Some people can't have kids because of the meds they're on to control the disease. Some people can't hold down a job (I'm one of them - this year was meant to be the year I go back to work and we get ahead. Right now, that's impossible!)
I feel lucky to have such incredible children who's compassion and sympathy for others astounds me all the time.
I feel lucky that I have such an amazing support network who will do anything I need them to, to help make my life more manageable. Friends and family who understand that I can't do all I want to and sometimes I don't realise this until just before whatever plans we've made are meant to occur.

My kids are so resilient though. They should be getting to go to the movies and having friends over all the time.  They should be going to the park and shows and camping. If it wasn't for my 'village' they'd have done nothing at all these holidays.
As it is, my superhero mum and sister have taken them out at different times and had them for the night. A new friend from school, the mum of one of Olives classmates,  offered to take Olive for a day out with a bunch of other kids from her class. Olive had a blast and I'm so grateful to people like this beautiful soul who 'get it' and open their arms to extend my village.
I hope one day I will be able to return the favour.

On the subject of Olive and school, she is smashing it. She comes home each day with a new reading book that she seems to be flying through, and she practises her writing anywhere and everywhere. On the weekend the big kids decided they wanted to share a room so Olive has her own room for the first time. I found this note on the floor outside her room. She does a few letters backwards and is still learning about spelling but it says: No one can come in Olives room except daddy and mummy.
It was the first thing she did once everything was moved over!
I have so many notes and letters the kids have written stored away for them to laugh at when they're older - this one will be added to that pile!

Olive has also made some friends at school, most of them being boys. She seems to gravitate more towards boys as friends at this stage and is always telling stories about the funny games they play.
One of the boys told her she was little. She got most upset about it and told me she sat under the table and "no one even came to see if I was ok mama!" She told me.
I have to giggle at this - she IS small. She's one of the shortest in her class. She developed a bit of a complex about it for a while and though it's hard when your child is unhappy with a part of themselves for whatever reason, it makes me smile that this is what is causing her grief. We all expected her to have issues with people saying things about her nevus,  but that barely even gets a second mention these days!
She tells me nobody at school ever says anything,  and that it doesn't bother her. We still talk about it but just don't draw a lot of attention to it. She doesn't like shaving it anymore (she doesn't like the sound of the clippers and she says she loves her soft hair!), so for now we don't.  She did get me to cut the hair on her large arm satellite one day with scissors though - that was time consuming!
Unfortunately whether she likes it or not, we need to shave the satellites in summer to get good sunscreen coverage. But we'll cross that bridge when it comes to it.

She's growing up too fast. She's 5 and a half now (those halves really count when you're a kid!) and she's always making cries of life being unfair - when Jaxon and Meisha are allowed to stay up later, or when I won't let her watch Barbie YouTube videos all day. She's a bit of a princess in our house and even though she's getting older, she's still very much the baby. Every night around midnight I get a tap on my shoulder and a whispered, "mummy? Mama?" just before she climbs in my bed, blankie in tow, and snuggles her soft little body into mine. You can't see no when they're that sweet. Even if they're 5-and-a-half.

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