I am so proud of my Big J right now. I have not known an eight year old boy to have such a happy disposition and to be so brave and determined when suffering for a month with tummy ache and lethargy.
It brings back memories of him lolling for hours on the sofa with his ‘Huggie’ bear, struggling daily with stomach pain, looking pale and having no appetite. He has been full of energy and vitality for months now and to revisit that dark place has been disappointing for him and upsetting for me, reducing me to tears of anguish, worry and guilt about why we find ourselves here again.
The deterioration has meant going back to hospital four times in the last two weeks to seek further advice from the specialist and to have more blood tests. The specialist keeps reminding me that Big J has ‘a condition’ and not ‘an illness’ and so we must learn to live with this roller coaster ride of pain, confusion and emotion for the years to come. A lot for a little boy to understand and to have to deal with and a lot for me too.
What I worry about is the daily stuff. Whether he will make it in to school in the morning, whether I will get a phone call from the teacher to collect him and whether he will have tummy ache at pick up. They are thoughts that continually run through my head when I am not with him. The only way I can summarise it is feeling like I am on stand by, all day, every day, wondering if he’s suffering and if he’s going to make it through to the end of the day.
Thankfully at school, the teacher now spots the signs in him – the grey pallor, the quietness and this look of pain he has – and she handles it beautifully. She gives Big J the time and the space to deal with it so he can recover on his own and return to the rest of the class when he is ready. I believe that it is this ‘no pressure’ approach that is working for Big J and I will be forever grateful to her for her support and patience whilst we get through this tricky time.
And with all these ups and downs, hospital visits and concern, I see Big J positively changing in front of my eyes as he learns how to cope with his personal situation with maturity and courage. I believe this is an important skill that will help him deal with life’s ups and downs as he grows and develops in to a young man.
So whilst we continue to search for answers, I can see my Big J as the caterpillar, slowly developing his confidence and strength to grow the wings that he will use to fly off and experience life as the beautiful, brave and amazing creature he is showing signs of becoming.
HAVE A HAPPY TUMMY DAY ?