This page is devoted to exspress my feelings as a parent dealing with the way my child is now, and the inevitable outcome for my child.
October 8, 2000
**First I would like to say that I LOVE my son NO MATTER WHAT!! He as well as my other 2 children have been true blessings from God!! I am very proud of all 3 of my children because each of them in there own way are very understanding and full of Love for each other!
Joshua is now 3 yrs old. My precious little boy was born with Lissencephaly (smooth brain). This is a brian disorder that causes my little boy to not only have severe disabilities but have a lessened life exspectancy. How long? Nobody will ever know until that dreadful day comes. I try not to think about the day he will die, but I can't stop thinking about losing my baby. There are so many feelings that I feel, like when the day comes that God takes his angel home, he will never feel anymore pain, he will never have another operation, he will never have anymore hospital stays, he will never cry again because something hurts and is not able to tell me. He will be at PEACE !!! BUT the selfish part of me can not imagine life without my son. I can not imagine not being able hold my son. I know that I am going to miss my baby when he dies but I know that God will be there for him and he will be in a better place and until then I will try to do the best that I can!
If any parent out there has the same or similar feelings as I do, Please don't think that you are alone. There are many of us with children with Lissencephaly or children with other disorders with the same dreadful outcome, that may be feeling down or depressed at times. These feelings are quit natural. You just have to have faith! Faith? I believe that God has given Joshua to me because he knows that I will take care of him and/or I believe that God has given my Joshua to test me in some ways. I have always eccepted that Joshua is the way Joshua is. I can eccept that Joshua had to get a feeding tube. I can eccept that Joshua had to get a tracheotomy, BUT I will NEVER eccept the times that Joshua get sick so bad that it takes all his energy and he is sick for a long time. I will always "question" God for that. I believe that God has the "power" to control our lives, so why make a child sick that has already gone through so much. That is the only thing that I will NEVER eccept! Please if anyone wants to talk or has any questions Please e-mail me at [email protected]
