Going Home.........

After 187 days in the hospital Sadie was finally ready to go home.......

But were we ready? Not at all, not even close.

How do you prepare for this? How do you know what to do?

I have no answers. I have no idea what was going to happen but what was the alternative, send her to a care facility? No, not my child. We would figure this out someway. I mean we were not the first family going through this and sadly we wouldn't be the last. Maybe it would have helped to talk to someone else that had been trough this. But that didn't happen. Nothing can prepare you for taking your child home.

The staff at the hospital goes over everything with you before you go home and of course I had been there with here for her entire stay so I should be prepared. Well yes I guess in a lot of ways I was but it is easy to feel that way when you are in the hospital~ Anything goes wrong you just call for a nurse.

On August 21, 2006 Sadie was released from the hospital. She went home with a IV line in her arm, her feeding tube, her suction machine and 2 tons of supplies. She needed to be watched 24 hours a day, moved every hour, fed every 2 hours, changed every couple of hours, her IV needed to be flushed once a day, etc. How on earth is this possible? How can we do this?

Maybe it is the lack of sleep, maybe fear but no matter what it is you start to second guess your every move. But the alternative is not a possibility! How can you even entertain the thought of putting your child in a care home. Could they take better care of her? Would she be better off there?

The answer was always a resounding no! She is part of me, she is my child, she is my heart. I couldn't even imagine leaving her with strangers. She could no longer walk or speak, she would be so alone, so scared. This is not the life she fought so hard for. She fought to be a part of our family, to be loved and cared for by us.

So with the help of my mother and her husband we care for her the best we can. Stumbling through all of this mess. Learning from our mistakes and making ones that we never thought of. There are no right answers and each special needs child is different. You do the best you can for your child and hope that is enough.

Going home was just the first step in our new journey

Where do you find your strength

Hour after and hour of sitting in my daughter's hospital room watching her fight for her life.....4,488 hours to be exact. I watched Sadie go through things that nobody should ever have to deal with - EVER! My 8 year old daughter fought so very hard to stay alive when everyone said she would not survive. Why? Why would you want to suffer and struggle so hard to stay here when leaving would have been so very easy. As her mother I wanted nothing more then for her to stay, only for selfish reasons of course. I could not imagine my life without her, I would not even let that thought enter into my head. But as a person I could not say that I would have fought so hard to live. No, I think I would have given up and taken the easy way out.

The pain that she endured is simply unimaginable both physically, mentally and emotionally. She had so much taken from her in a matter of days and then months and months of pain. Trapped inside her body, dependent on others for everything.

Shortly after Sadie was transferred out of the Intensive Care Unit, her sister and I were spending some time alone talking. She asked me "Mom, why didn't you just let her die?" I swallowed back my tears and replied "That was only a choice that your sister could have made and she is not ready to leave us." Her sister said "Mom, why would anyone want to live like this, why would you want to live this way. My sister is gone, she is someone else now ."

In many ways she was right, this was not the same Sadie that entered the hospital 60 days ago. The first 2 months I had just been on auto-pilot and had not stopped to really grasp what all of this meant to the rest of our lives. This was not the same child and would probably never be again. How do you deal with that? There is nobody to help you deal with this, there is no rule book. It is like dealing with a death, I had to morn the loss of who she use to be. My child was now a different person.........or was she?