This experience will always leave you a different person then before, and just letting go of what we thought our child would grow up to be like. Not settling for something less, just different.
God knows we all cope with pain differently, I am the worst person in our family that deals with this, but I also see everyone else would give up on him and let him eat and drink all the things that would be really bad for him. So I look at this as I am the one doing all the work keeping him healthy everyone else just goes on living like he is just fine. That is actually a good thing in our house because as the mom I know I will always feel their pain no matter what that pain is. I see that my son always comes to me when he is not feeling well, even tho he loves his dad very much, he wants me to take care of his needs. He may argue with me over a vit. but thats ok, no one else would do this for him.
Do I still lose is when he has a bad day or week, (YES) I just do what I can to make sure he feels less of my worry. I now can enjoy the fruits of my labor as
my husband and I receive comments from men in our community that adore our son. His boss says he is a hard worker, the 25 year firefighters would love for him to have their back in a fire, our parish priest blessed and gave him a medal of the patron saint of firefighters on All Saints Day.
Why??? Is it because they can see and hear him ticcing and marvel at how he copes and still keeps a smile on his face. I really don't know... but is sure keeps me going.
He is 17 and at 12 yo when he first exploded I never would have believe this is where he would be. I would not cange anything on how I coped because it is all in God's plan for my son. I may feel like crap and think I did not handle something the right way, but I know there is always some "GRACE" out of this suffering.
One of the best reasons for looking at this as a blessing is to be right there with you all felling your pain, praying for you, and just knowing their are others out there that suffer more, and I have great compassion for them too that I may never have had if life was just a piece of cake.
cp