What has been the most difficult part of this journey, as a parent? I think seeing
your child in pain and not being able to do anything about it, is probably what's
most difficult and, you know, there's always, honestly, the fear of the future
but when I look at how life has improved from when you were diagnosed before
surgery to after, you know, that has alleviated a lot of fears. For me the
most difficult part, I think, was when we were on different pages as to, to how to
proceed and I think it's just important that you talk things out and if things get a
little too heated, somebody has to just go out go for a
long walk and cool down. What would you tell, or what do you wish you would have known before all
of this. I was fortunate enough to be able to make some connections with
parents who had had the same surgery of children who were approximately your age
and I gained a lot of assurance after being able to speak to them. I mean
reading about it was one thing but actually being able to speak to a parent
was really helpful, and there are support groups where you can get names, there are,
you know, your doctors can possibly give you names of people that you can call, um,
so I found that really helpful. But be prepared to find people whose
experiences haven't been that positive or who maybe are in a different place
emotionally or mentally. It's important to ask a lot of questions, get a second
opinion. Try to research it, but don't go overboard.
And understand that it's, it's a long road and you don't need to know
everything now and don't need to know all of the possible things that can
happen down the road. We would be more concerned with what, what did we do to
make today better. Were you able to find comfort and, if so, what was comforting to
you during this time. I think just watching your child thrive and
accomplish the things that they want to accomplish is what brought comfort.
I agree with your mom, that just, just living through it and seeing all of the
things that you've been able to do and accomplish and how it hasn't affected
your spirit or your sense of adventure or fascination with life. I think that's
what's been most comforting. For us, our family anyway, talking about it, looking
at it, sharing the whole experience made it more normal. I think if a parent can
show the acceptance and normalize it that that would be very helpful for
anyone who's gone through the surgery. The last thing in the world you need is
someone who's close to you making it seem like it's weird or it's unusual or
difficult. Are there any last things that you want to say or add or share with
parents going through something like this? Only that, you know, difficult days
are difficult but tomorrow's a new day and I think conveying that to your child,
that, you know, we can get through this and, you know, we'll see what tomorrow
brings and I can say in your case having your ostomy surgery was the best
decision you ever made. It may look like there's no tomorrow but there always is.
you