Sometimes the best decisions and the hardest ones. Grace had a really hard week last week. She really struggled with following instructions and getting along with her peers. The decision had to be made for Christmas. It came down to three choices. One bring her home over night, visit her at the SH on Christmas Day, or Visit her on Christmas Eve.
1. Bring her home for an overnight visit. We were really excited to have this happen. She had been doing great and we all hoped that this would be what would happen. Once we found out she had been having problems we all knew this was in jeopardy. I went down for Grace's monthly staffing meeting to talk about her treatment over the last month. Her team said if we wanted we could still have her over night. Here is where I will sound like the bad guy. I had some very big concerns. Since Grace went into the hospital before being moved to the SH we have only had on site visits with the exception of one off campus visit the day after Thanksgiving. All of our visits have gone well, but they have been short in comparison. Our concerns are that we live over an hour away and if she had any problems we would have no back up. Our only choice would be to call the police. That would be a great lasting memory for Christmas!! Dad said it best when he said Christmas is already an emotional time, weather good or bad its still emotional. Did we really want her very first home visit to be on such a crazy day? Also Brother and Sister and even Me (Mom) are still very guarded with Grace. Before Grace went to the SH everyone walked on eggshells all the time. I don't see her first being much different. Brother and Sister are finally doing really well. Brother has brought all of his grades back up and we finally have a nice calm in our home. If we bring Grace home and she blows up what will that do to Brother and Sister? These were very real concerns. Once I was talking to Grace's treatment team they agreed that these were valid concerns. Finally I asked her team, "If it wasn't Christmas would anyone at this table suggest that Grace is ready for a home visit?" Everyone answered NO!! That had to be our answer. I just cried. I can't imagine waking up to open presents on Christmas morning with out all of my children there.
2. Visit Grace on Christmas day. This was also an option. They even said we could pick her up and do another off grounds visit. My concern was finding somewhere to go on Christmas day would not be easy. Pretty much it would be going to a movie. I don't know if you have ever gone to the movies on Christmas but it is so busy. I didn't think that was a good option. Plus it would mean 3 hours of traveling on Christmas day for All of us. I don't know about you but Brother and Sister weren't very excited to travel that much on Christmas. Also we found out that Grace will be getting Christmas gifts there at the hospital. The staff said it is a really fun day for the kids. Grace was excited once she found that out. Twice as many Christmas gifts. Little turkey.
3. We have decided that the best option is to go and visit Grace for Christmas eve. We will give her all her Christmas gifts and watch her open them. We will open our gifts from her. We will read all our traditional Christmas stories and enjoy as many of our traditions as possible.
The thought of not having Grace home for Christmas is killing me. However I am having to look at the bigger picture. If this was any other time of year this wouldn't even be a choice we would have to make. I am also trying to think of her treatment. I feel like bringing her home right now would be setting her up to fail. I don't think that is fair to her either. I am willing to miss this Christmas if it means she is getting well. I hope that this will be the only Christmas we have to miss for many more years. I hate being the responsible adult right now. It means making the hard decisions and seeming like the bad guy. I know that some people reading this will not agree with or understand the choice that we have made. I only ask that you don't judge. We are in a place that I hope no one else will ever have to be. The choices we are having to make don't just affect Grace but I am having to protect and think of two other children. I know Grace is getting the bast care available for her. I have to fight for Brother and Sister right now.
I hope everyone has a very Merry Christmas and a happy New Year!!!
for the Love of Grace
My Beautiful Grace
Thursday, December 18, 2014
Friday, December 12, 2014
Holidays...
The holidays can be a magical wonderful time or a crazy frenzied stressful time and if you're me some of both. I have to say that this year has been much easier than last year. I was the Grinch last year. I didn't even want to decorate the tree. Last year I kept telling myself "Grace will only be gone one Christmas. By this time next year she will be back and better and we will be able to move on."
The reality is she is gone again and I don't know if she will be back and better by next Christmas. I am okay with that right now.
First I will do a quick update, then I'll share some other thoughts. As of right now Grace is doing pretty well. She still has good and bad days. She gets into trouble every now and then and looses her level and has to start all over. There have been some pretty big issues in her unit and the staff have been required to talk to the whole unit. Some of the conversations are things that I wish Grace didn't have to be involved in. Grace called me upset over the discussion, I just had to say I'm sorry I can't protect you. This is real life. I told her if she was at home I could protect her, but her choices have made it so she has to be there. It is really hard to be compassionate but realistic at the same time. I still don't know how much of this is in her control and I hate not knowing that. Over all she has adjusted well and most days is happy and chipper. We were able to go pick her up the day after Thanksgiving for a off campus visit. We took Grace to see Big Hero 6 and then to dinner. We spent about five hours with her. It was so much fun. She was so calm and sweet the whole time. In fact Brother and Sister started to argue a bit and Grace pointed out a better way for them to handle it. That made Dad and I giggle a bit. It was really neat to see a small change. I am also happy to say when it was time to say good bye there was no drama or tears, from anyone. It was hopefully a look into what the future may hold for our family. I love looking back on that day. As of right now Grace is working hard to be on her best behavior to hopefully earn an overnight visit for Christmas. Shopping for Grace for Christmas has also been very difficult. She is so limited in what she can have at the SH. We have gotten creative and have been able to find a few nice things that she will enjoy. I think she would be happy with socks and nothing else as long as she is at home. I have been really holding onto hope that she can come home for Christmas. It will be the first time that she will be home in 3 months. It seems like so long ago that she left. I can't believe how much different life seems now. We have settled into a routine and Brother and Sister and for the most part doing better. I (mom) had to have an emergency Gallbladder surgery, and Dad had to have Stage 0 Melanoma In Situ removed. Other then that we are doing pretty well.
Getting through the holidays with Grace gone last year seemed so overwhelming. I know that someday our children will grow up and leave home. I know that they won't always be able to come home for Christmas. I've know that since the day they were born. I just never thought I wouldn't have to deal with this fact with a child so young. The hardest part is trying to make things as normal as possible for Brother and Sister. My biggest fear is that someday Brother and Sister will resent everything they have gone trough because of Grace. I think this makes me a little over protective of them right now. I have bent over backwards to allow them to continue to do the things that they want to do. Sometimes then I fear that Grace will resent them for all the great things that they have done as well. I think I might worry too much!!! I guess that makes me a Mom!!!
Many people have asked us if there is anything they can do to help? Or if they can get anything for Grace? Here is what I have come up with for now. If you feel like getting her something message me and we can work out details on how to get it to her. Thank you everyone for your continued love and support. It means the world to us!!!
Items
Coloring books (She loves fashion)
Sketch pad (no spiral bound)
Shampoo
Conditioner
Chapstick
Stationary
Lipgloss (no glass or metal)
Books (7-8th grade reading level)
Socks ( the crazier the better)
Letters or post cards. (please send to home address, mail takes forever at SH)
The reality is she is gone again and I don't know if she will be back and better by next Christmas. I am okay with that right now.
First I will do a quick update, then I'll share some other thoughts. As of right now Grace is doing pretty well. She still has good and bad days. She gets into trouble every now and then and looses her level and has to start all over. There have been some pretty big issues in her unit and the staff have been required to talk to the whole unit. Some of the conversations are things that I wish Grace didn't have to be involved in. Grace called me upset over the discussion, I just had to say I'm sorry I can't protect you. This is real life. I told her if she was at home I could protect her, but her choices have made it so she has to be there. It is really hard to be compassionate but realistic at the same time. I still don't know how much of this is in her control and I hate not knowing that. Over all she has adjusted well and most days is happy and chipper. We were able to go pick her up the day after Thanksgiving for a off campus visit. We took Grace to see Big Hero 6 and then to dinner. We spent about five hours with her. It was so much fun. She was so calm and sweet the whole time. In fact Brother and Sister started to argue a bit and Grace pointed out a better way for them to handle it. That made Dad and I giggle a bit. It was really neat to see a small change. I am also happy to say when it was time to say good bye there was no drama or tears, from anyone. It was hopefully a look into what the future may hold for our family. I love looking back on that day. As of right now Grace is working hard to be on her best behavior to hopefully earn an overnight visit for Christmas. Shopping for Grace for Christmas has also been very difficult. She is so limited in what she can have at the SH. We have gotten creative and have been able to find a few nice things that she will enjoy. I think she would be happy with socks and nothing else as long as she is at home. I have been really holding onto hope that she can come home for Christmas. It will be the first time that she will be home in 3 months. It seems like so long ago that she left. I can't believe how much different life seems now. We have settled into a routine and Brother and Sister and for the most part doing better. I (mom) had to have an emergency Gallbladder surgery, and Dad had to have Stage 0 Melanoma In Situ removed. Other then that we are doing pretty well.
Getting through the holidays with Grace gone last year seemed so overwhelming. I know that someday our children will grow up and leave home. I know that they won't always be able to come home for Christmas. I've know that since the day they were born. I just never thought I wouldn't have to deal with this fact with a child so young. The hardest part is trying to make things as normal as possible for Brother and Sister. My biggest fear is that someday Brother and Sister will resent everything they have gone trough because of Grace. I think this makes me a little over protective of them right now. I have bent over backwards to allow them to continue to do the things that they want to do. Sometimes then I fear that Grace will resent them for all the great things that they have done as well. I think I might worry too much!!! I guess that makes me a Mom!!!
Many people have asked us if there is anything they can do to help? Or if they can get anything for Grace? Here is what I have come up with for now. If you feel like getting her something message me and we can work out details on how to get it to her. Thank you everyone for your continued love and support. It means the world to us!!!
Items
Coloring books (She loves fashion)
Sketch pad (no spiral bound)
Shampoo
Conditioner
Chapstick
Stationary
Lipgloss (no glass or metal)
Books (7-8th grade reading level)
Socks ( the crazier the better)
Letters or post cards. (please send to home address, mail takes forever at SH)
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