May 19, 2013
You may not know that May is Crohn's and Colitis Awareness Month. Specifically today, May 19, it is World IBD Day. That's Inflammatory Bowel Disease.
Up until last August, I didn't know anything about Crohn's Disease. I had three healthy children, or so I thought, and I supported charities such as the Muscular Dystrophy Association and SANDS which I still do because I have a personal connection to them.
When my little boy was diagnosed with Crohn's Disease last year, he was 9 years old. A simple blood test to check his iron levels led to four trips to Brisbane and lots of procedures and tests at the Royal Childrens's Hospital. Questions, uncertainty, fear and sadness took over as we realised that our child was sick. Where the hell did this come from?
I mothered my kids the same, fed them the same foods, nurtured them all exactly the same, yet my middle child had this thing called Crohn's Disease? An inflammatory bowel disease. Not a boutique disease that people are happy to talk about, rather something that is spoken in hushed tones because it is to do with digestion, intestines, poo, blood, weight loss, cramps and dodgy toilet habits.
And my reference above to boutique diseases, is written with the utmost of respect, what I am saying is that Inflammatory Bowel Disease is not one that has a high media presence.......therefore this month is so important to spread Awareness and understanding about Crohn's Disease and Ulcerative Colitis.
There is no cure. They are chronic, inflammatory conditions that are characterised by periods of good health (remission) and flare ups, and can differ from person to person - there are so many variables.
So how are we doing? After the initial shock, I decided to find out as much as I could about what we were dealing with, and to work towards the goal of keeping my son as healthy as possible. There are still so many unanswered questions and I suppose with time, they will be answered. I worry all the time.....about the medication I am giving him....what it is actually doing to him besides keeping the inflammation away from his little body.
I worry that he is not growing, that he is pale, that his body aches and he complains about his joints being sore...his legs, behind his knees, his wrists. I worry that he gets sunburnt easily and gets headaches because of the medication. I think about his immune system that is now compromised, and I try to keep him away from coughs and germs, but it's not easy. I look at him sometimes and wonder was it anything I did (no)...
If he is tired or takes too long in the toilet, I worry.....it's a constant thing. It's called being a Mother.
However, there are some things that I do know......
* my son is the strongest, bravest kid who just accepts this situation
* Crohn's Disease does not define him. He is a footballer, an ace Lego builder and is quite handy on the Ipod (minecraft and Star Wars are his thing)
* his family adore him
* he has tonnes of friends
* he's hilarious and cracks me up
* knowledge is power
* things could be worse
* support is precious
* we all have good days and bad
* a good, balanced diet is a given
* medication is a necessary evil
* I cry easily and often
I'm looking into alternative remedies to help keep my little guy healthy, and to ensure the best chance of a prolonged remission. It doesn't take away the need for medication, but rather work side by side..it can't hurt can it?
And the best, most valuable thing of all that I have discovered is the support and kindness from the IBD community. From this forum to a couple of Facebook groups who helped me today to some special people who are living with Crohn's Disease or Ulcerative Colitis whether it be themselves or their child...Jake, Stacey, Annie, Karen and Stephanie.
May 7, 2013
Miss D and I had the most wonderful night recently, participating in a sneaky surprise baby shower for our dance teacher, who is due to welcome her first baby in three weeks time! I was looking forward to the shower all day, because our mother to be had no idea and the look on her face when she walked in was priceless!
I thought she might cry, but she held it together very well, and she couldn't believe that we had kept this secret from her! The theme was blue and white, because "we" are expecting a baby boy, and I'm sure there will be plenty of available babysitters during dance class!
The room looked amazing, with large blue and white pom poms hanging from the ceiling, a beautiful tablescape filled with delicious food and little touches of baby blue everywhere to be seen. The hostess did such a wonderful job!
Miss D was with me and during the night I found myself looking at her, thinking back to the weeks before she was born, my first baby. Twelve years ago, I had no idea how my life would change, or how I would feel becoming a mother for the first time. With my second and third baby, the feeling was just as exciting because I knew what to expect.
But that first one, feeling overwhelmed with emotion, the preparation, the fear of the unknown....there is simply nothing like it. I look at my three little birds and just wonder how I got so lucky......
April 1, 2013
Forgive me Father, for I have not blogged for two weeks.....
That thing called Life, has been in the way! Work, homelife, kids activities, dancing festivals, school stuff, more work, washing, new house housework, Easter, Harbour Festival, kid wrangling and the list goes on.
When I sit down at night to relax, I'm so tired that I can't concentrate on stringing two words together, worthy of even publishing on my blog. But I 'm happy to say that school Term 1 is now over, and the holidays are before us!
I can't believe how quickly the first term has passed! It's usually a busy one for us, with Miss D (aged 12) dancing last weekend in our local dance competition (scoring for herself a 4th, a 2nd and a 1st), dancing on stage at the Harbour Festival last week and now preparing for an Eisteddfod next week.
Mr C (aged 10) has been busy with a special reading project at school, called Project 600, and now is looking forward to AFL, with training starting this week.
Miss T (aged 8) has been loving her Saturday morning dancing class, and has been working on her loudest quite voice, which she delivers every time we are in the library!
The Hubbster has been busy working on the Farm, cutting grass at every opportunity! He doesn't need an excuse to take Jaffa the Tractor for a spin, he even cut the grass at our neighbours farm last week!
We still don't have a television in the house, as we would like to buy a flatscreen tv for the Theatre Room, so I'm still heading back to the Shed to watch my shows at night, which frankly sucks as it brings back memories of the four year never ending bad camping trip we were on!
So what else is happening you ask? Well, did I tell you that in July, I'll be attending Blogher13. Oh and it's in CHICAGO USA! Can you believe it, because I can't! Only the biggest blogging conference ever!
My flights are booked and paid for, and I'm now working on the fun stuff - where I'll go, what I'll get up to, what I'll wear and I'm trying to find the perfect walking shoes because after Chicago, I'll be flying to New York for a week!
It doesn't seem real yet! After 16 long years, I'm finally going back to my beloved America, the one place that has held my heart for so long......