August 25, 2012

And so it begins....



Two words that hadn't entered my psyche until just recently.

Crohn's Disease.

If you are not familiar read here.  It is a type of inflammatory bowel disease, and my 9 year old son has just been diagnosed.

I wrote the note above while talking with the doctor who delivered the news.  I had to ask him to repeat certain parts so I could write it all down.

I like to know everything.  All at once.

I'm a bit like that.

So how am I feeling at the moment?  Shock, sadness, sorrow and repeat.

I think I'm grieving.  For the loss of my healthy child, for the years ahead that he will suffer with this disease.

Who knows what will happen.  I understand fully how bad things happen to good people, and that there are others in situations much worse than ours.

But this is our reality.  And I shall grieve for my child as I will.

My mind has been filled with appointments, visits arranged for the doctor, the pediatrician, the dietitian, blood work, immunization booster shots, drugs, treatment and support.

I allow myself to cry maybe once a day.  When I'm at my most emotional, the tears sting and I worry about the future.  Then I get it together and just worry about the present.

Mr C will start treatment next week with Exclusive Enteral Nutrition, which is an 8 week liquid diet to heal and nourish him.  No solid foods at all.

I've arranged his feeds to arrive next Monday in the form of special medical milk poppers, and I'm drafting letters for his school and his teacher.

We will give him weekly and monthly incentives to keep going for the full 8 weeks.  Hopefully then he will gradually start back on a easily digestable diet.


Knowledge is Power 

I'm determined to find out everything I can about Crohn's Disease, to allow my son a healthy life.

I've joined Crohn's and Colitis Australia as well as a great online forum.  I've spoken to a counsellor by telephone who has had experience and who guided me greatly.


My Son

We have been honest all the way with Mr C about what has been happening, with the trips to the Royal Childrens Hospital, the invasive tests, and what his body is doing.

He is so casual, so easygoing - I'm the one who is the emotional nutcase.

I showed him a diagram of the body and I explained what the tests were for, and how the little camera that he swallowed recorded all the way through his body.  I told him why he has to have treatment and why he will feel so much better by doing this.

"Mummy, what if the kids at school tease me".

My tears come again, as I remember the first time he was laid on my chest, and I swore to protect him forever.


St Mary of the Cross to Pray to God for Callan's treatment and recovery. Dianne M
 

24 comments:

Heidi said...

My niece has Crohn's Disease. I wish you and your son all the best!

Anonymous said...

My best friend has crohns and was dx'ed as a child, she is now 37, married and has a child. She does get an infusion every six weeks and takes medication daily but all in all she is ok. Your son will learn a new normal, keep your head up!

Margaret (Peggy or Peg too) said...

I'm sorry you all have to go through this. I send you all good wishes!

Debbie @ Aspiring Mum said...

I am so sorry to hear of your son's diagnosis. It is such a shock to find out. My husband has Crohn's and is managing quite well on daily medication.

Thinking of you all.

Something Gorgeous said...

So sorry for you and your family. As a mum you would rather have to endure the pain yourself, but life's not like that. Stay strong. xT

Farmers Wifey said...

Thank you so much, I so appreciate it xo

♥.Trish.♥ Drumboys said...

Thinking of you Michelle -it is so daunting when you get a diagnosis for your child that shatters your world .
You sound very probative and I am sure C will be in good hands with you at the helm navigating him through the stormy waters ...if any.

My friend's husband has Crohn's disease and he lives a very normal life.

Deanne said...

It is so hard when your child has something like this wrong with them!
May I suggest you find a copy of the book called The Gluten Connection by Dr Shari Lieberman. - I borrowed it from my local library. There is also info on the net. This doctor has had fantastic success "curing" patients with all kinds of digestive conditions including Chrohn's, IBS, Ulcers etc. by putting them on a gluten free and sometimes dairy free diet.
Best wishes, thoughts and prayers.

Mrs BC said...

This sucks, and it isn't fair for this to happen to your 9 year old! He sounds like he will cope with it all really well, though, and as anon said, learn a new normal. What a big adjustment for all of you. You are being a great mum, doing everything you can do. Best wishes, and hugs.
xx

Mimsie said...

My dear friend I am shocked at your news and please give my love to Mr C. The above comments should give you hope but you have a long road ahead of you with everyone learning to adapt to this change in your lives. You are such a capable person I know you will manage as you do with everything else. My thoughts are with you and Mr C in particular but with all the family. xxx

Melissa Jane said...

I am sorry to hear of your news, but I am so glad you have been honest and upfront with C. Although you say he is easy going, I know from experience it is easier to act this way, even while your mind is going a hundred miles an hour. He knows you are there for him - and that is important.

Jacana said...

It is just awful as a Mother when news like this about your child gets delivered. I had tears in my eyes when I read his question about getting teased. All the best to you and your son.

Trish said...

WOW Michelle, my heart goes out ot you guys, but it sounds like you have a very brave little boy there. I dont know if you follow the blog Katrina from the block, but she has crohns & shares alot on her blog, I think she is also an ambassador for crohns and may possibly be participating in some sort of trial research program, she would be good to chat with.
Best of luck, its tough when all is not well with our babies!!

Farmers Wifey said...

Thank you lovelies, your kind words are so appreciated and remembered xoxo

Mama of 2 boys said...

Oh I am so sorry Michelle. I never understand why bad things happen to good people, it really doesn't make sense. As horrible as the diagnosis is, now you do have an answer and can start working on the cause. Your little boy sounds like a beautiful, brave soul and has a wonderful Mama right there with him. Big hugs to you xoxo

River said...

About the possible teasing-could you have a word with the teacher and principal, and maybe there could be a class discussion on diseases/conditions that affect people in different ways that mean diet modifications etc, this could cover more than just crohn's, it could touch on dairy and gluten allergies, diabetes, etc. When kids understand what's happening to their friends, teasing is much less likely. The friends could be surprisingly supportive, just as you are.

E. said...

I'm glad you finally have an answer to his ongoing health issues. I hope that the 8 weeks help to heal him.

Kakka said...

I am so sorry Michelle that this has been the diagnosis. I know that it could be worse, but this is huge for you and your son and family. I know that you will be his advocate, his strength when he needs it and all this is because you are a great mum. It is hard when it is our kids, we as mothers so want only good things for them. Wish there was something I could do to help, but all I can offer is encouragement and cyberspace hugs. xxx

Farmers Wifey said...

Thank you so much lovelies xoxo I will be giving the school a letter to discuss at the teachers staff meeting, a note with my son's photo for the canteen, and a class meeting with his class and the teacher to chat about sharing food etc......that's all I can really do. We have spoken to Mr C about how important it is to not eat any other food, and I think he does understand xoxo

mksharingthelove said...

I don't cry very often at blogs but today I have. Not for your son but because I am feeling your pain in wanting to protect your child.

Being honest with him and educating him and yourselves is protecting him more than you know. You are being exactly what you promised your child and more.

Best wishes for the 8 weeks ahead x x x

Farmers Wifey said...

awwww thank you so much for your lovely comment, you've made me feel so good about myself xo

I'm so inspired by my son - he is handling it all so well, he knows what Crohn's is, and why his "small intestine" is not well, honesty goes a long way with kids xoxo

Debbie said...

I'm so sorry to read about your son's diagnosis. We have a farm in Kentucky and over the years we have had several customers with CD completely healed. Although I feel like Jordan Rubin has veered from his original mission due to the marketing success his first book, The Maker's Diet was very good and I have seen first hand how miraculous the human body is in it's ability to heal. I had a man with the worst case of CD write out what he felt helped the best. I would more than happy to share it with you if you would like to contact me. You can read about our farm at www.rivercottagefarm.net and my email address and phone number are available there.

All the Best

Debbie Apple

Sonia LifeLoveandHiccups said...

Oh hun I am so sorry. I can only begin to understand the stress and worry you have been through. i am sending so much love to you and your brave little guy xx

m.e (Cathie) said...

sorry to read about your son's diagnosis. my heart goes out to you as I know being a mum it just kills us to see our little beings suffering.
I hope it's manageable and you cope aswell as he will.