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