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            "Don't Mourn for Us"
                            Lessons I've learned  


I knew that we would be told F.'s dx was PDD, only because I had come across 
folks online whose kids had it. I knew "just enough to be scared out of my mind," 
as I have often put it, but people around me were amazed to note that I didn't 
openly grieve.  My excuse was that I was  "too busy"  to grieve. With all I had to 
learn about PDD,  autism,  language delay,  services,  funding, etc.,  I found no 
time to grieve. When I did shed tears, it was from exhaustion and anger. After 
all, I've lived in the special needs world all my life, having had hydrocephalus 
from birth. *How*, I wondered, could God allow this to happen to me AGAIN??   
I can recall my months of wrestling with this.

Well, F. is improving at an amazing pace, and because of this, my health has 
improved dramatically as well. Life is GOOD, much better than I ever thought 
it could be two years ago, when we first got the eval results.   This brings me 
to the philosophy that it is pointless and even insulting to mourn the way a 
child is, whether from autism or anything else.

I have never enjoyed admitting it, but hydrocephalus pervades through every 
aspect of *my* life. It is because of hydro that I am who I am, and without it, 
I would be a whole different person. Now I know that this is true in regard to 
F. as well, and I know how I would feel if I knew my parents had wished my 
hydro could be miraculously cured. When I was a kid, I wanted that, desperately.

  Now I know that,  even if a cure were found  tomorrow,  I'd still have the 
headaches, the seizures, the concentration and organization difficulties, the 
short-term  memory issues,  and all the other effects I have.  The only thing 
I'd  never need again is shunt  surgery.  Well,  I haven't had  any  for almost 
18 1/2 years! What difference would it *really* make?  

My conclusion in mulling this over is, very little.   I think this is what comes 
of acceptance,  and I realize that many of you have kids with far greater daily 
issues than F. has, but I hope my experience helps some.   I do fear  that F. 
will struggle through life,  as I have,  with school,  relationships,  directions, 
and other things, and it upsets me to think about it, but he will have someone 
who can help him with first-hand knowledge of how to cope--something I did 
not have. I hope this makes his life better, and I hope I can prove to him that 
I love the little boy he is and can now say that I wouldn't change him if I could.

                  Love to all!

 

 


                        

 

 

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