I took Kyd to the John Radcliffe Hospital in Oxford this week for a long awaited appointment.
Only a week after his 11th birthday, Kyd has been told he's due to have surgery on his bowel in a couple of months time. He's having an ACE tube fitted. It is quite a complicated operation but it will stop the pain he has daily because of his lazy bowel and constipation. Eventually the bowel may heal itself and he can have a normal, healthy, active adulthood... HURRAH... it may not though and he may end up with a bag for life... and that isn't a shopping one.
I am a bit scared, I think he is too. At 11 he understands these things now and so he has been informed at every stage. It is a lot of work after the operation and will take up an hour or more of our day, every day... but he'll have NO PAIN. For that alone I am so happy to go through the faff of a daily wash out... what parent wouldn't.
After 11 years of issues with his bowel and 1000000's of medicines in every form, we have finally seen the light at the end of the tunnel... no pun intended.... It is hard to believe that we are in his 11th year of life. His 11th year of silly little health issues. His 11th year of pain. Hopefully his 12th year will be pain free and happy.
I can't really whine mind you, he is remarkably healthy compared to some. He has no heart issues and he is well behaved when he wants to be. I thank the lord every day for that. Knowing that he has been lucky and seeing some of the problems his peers have been and are going through, Down Syndrome or not, makes me put his issues into perspective.
Every time I start to panic I take a deep breath and think of all the other children suffering from things that can't be fixed and as I breath out I am ready to face the world again.
'There is always someone, somewhere, worse off than you'
Something I say a lot, often to people who are going through the little things in life that seem huge to them at the time. However people who are going through long term problems, are often aware of this coping mechanism already. In fact, if you look closely, they are taking their deep breath in as you glance their way and as they smile when they exhale, they are thanking God that the people they are thinking of, in that worst case scenario, aren't them.
Sounds harsh doesn't it, its not that I, or anyone else for that matter, wish the bad stuff on anyone but sometimes it takes this little bit of hope that it's not the worst thing in the world that could happen, that pulls you through.
Next time you feel like the world has swallowed you up or you've fallen down that rabbit hole of life...
Just take a deep breath and think of all the people around you in this world that are in a situation you'd struggle with... I bet you can think of at least one.