I have mixed emotions about my sons upcoming surgery. I take everyday one day at a time put I feel when it comes closer to the time I have been having panic attacks. I enjoy every minuet that I have with my boys. Everyone says he will be ok and not to worry. but reality what if they are wrong. I wish people would not tell me that he will be fine. It doesnt take any fear away. I want to say what if he isn't can I come to you and say you were wrong. I think about my son every moment now. I go home just to see his smiling face. His warm and caring personality and I think is this it is this going to be the last moments that I have with him. What am I going to do wihtout him. Each moment is so precious I watch him sleep at night and pray. All I can do is pray.

Am I really making the right decision to have this surgery. I know that I have no other choice. If I lose him is it the right choice. Thank you for letting me vent. I hope someone is listening. I feel like I'm falling apart. Here I will say it for everyone I am falling apart. So much is going through my mind this sadness overwhelms me and this antisipatory grief is enveloping me.

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Comment by Penny Pratt on February 23, 2009 at 11:18pm
Hi Teresa, I have a son Dillon who just had the surgery done. He had it done in November 2008. He is doing fine and we had no fears about his surgery. The first time his surgery was schedule it was cancelled due to the fact he had a slight cough so they could not do it and that was hard on us as we had to wait for another 2 months to have it done. When we were finally scheduled to be done we were glad. The day of the surgery it was a 6 hour surgery and everything went well, the doctors keep you updated to his progress. My son was only in recovery for a couple of hours and they were waking him up. He recognized everyone when he woke and seemed to be doing fine. Once Dillon was in his room they had him on pain medication, so no worries there. All children are different when it comes to the surgery and recovery as Dillon should of been in the hospital for 11 days but was doing great and released on day 7, and there was another boy we know who was done before him and he stayed in for 11 days. I am glad that we did have the surgery done as I would of hated for him to loose his independance and not be able to sit up straight anymore. When we got Dillon home we had adjustments to deal with but nothing we could not handle. The doctors and nurses were very helpful at the hospital making sure that we knew everything we needed to know before we went home. Dillon did get a little frustrated at times because he had to build his strength back up in his arms and could not do for himself. He did manage to though. He was home only for 6 weeks recovery and then back to school which he was happy to do. My son is 17 years old and he is doing everything that he used to do at home and with his friends, there are a few things that have changed for him such as bathing I have to assist with that now to a point. I hope that this will help you out a bit, if you have any questions please feel free to contact me. My thoughts and prayers are with you....
Comment by Veronica E. on February 23, 2009 at 8:24pm
I just wanted to say I'm sorry you're going through this! I know I will one day most likely be in your shoes and the thought of surgery is so scary. I will pray for you, your son and the doctors and nurses caring for him during and after his surgery.
Comment by Terry Porcaro on February 23, 2009 at 5:05pm
Dear Teresa: I am the grandmother of two boys with DMD, ages 4 1/2 and almost 3. My heart aches for you. I feel every emotion you are feeling. Whenever I babysit them, I too stare at them while they sleep trying to suck up every moment of them. Our boys are all so unbelievebly precious to us. My grandsons are young yet, so our family has not reached the stage of being faced with surgery, but I think in your heart you know you made the decision that you had to make. I am going to get down on my knees tonight and pray for your son's surgery to be successful. Just for now, ask God to lift this worry from your shoulders and carry the burden for you. May God grant you the strength and comfort you need.

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