And the roller coaster heads down the hill.
I'll tell you what Full Recovery - Never a Doubt needs a logo of a roller coaster with an angel on the front of it or something because just when you think you're goingup hill - whoops now you're going down and it's just as fun, scary, exhilerating, frightening and lets say frustrating.
Allie was brutal this morning and this afternoon and was maybe more off than ever today - certainly louder than ever to the point that we could only leave. You know it's not Allie, it's the injury but sometime you wow! Yesterday I had a few words with food service about Allie getting the wrong breakfast and the woman downstairs was the nastiest. This is not our first run in but from what everyone says, it's just just par for the course and while I can be strong with them they ahve to understand I just want Allie to have breakfast and I think they would understand that soemtimes a parent could be frustrated dealing with a child with a brain injury for 64 days. Just babbling but it's so wired you would think people that work in hospitals would be a little more understanding.
Allie was aprticulary brutal around lunch time today. We took her downstairs to a subway and while eating something set her off bad so we said we were going to leave until she apologized (behavior modification techniques ???) anyhow we walked away where we could see her but she couldn;t see her. We were interested to see what she would do. She wrapped up her sandwich to throw away, cleaned her area and put her top on her water, then she saw me and came walkeing our way, threw her stuff away and started to get ugly with us again so I told her to go to her room. She still says she does not have one there but started to walk the right way back. We hung back to see if she would go the right way. She did not. We have walked that way 50 times but she can not remember yet the right way to go and will say that she has never done it before. We caught up with her and brought her upstairs with her yelling at us on the elevatorlouder than I ever heard. Once we got to her room we left, got in the car and just drove in silence for a long time, then we parked and melted down, then we talked some more and felt a little better.
We wound up in downtown Greenville, SC and just walked down Main Street in the rain. Someone told us about a healing stone they used to help recover from their brain injury so we found a gem shop and the girl there made us a bracelet out of the stone. This made us happy. We also bought some Arnica, St. Johns Wort and Omega 3 - just can't get her to take it. Soon.
Anyhow we got back to the room and she was in a good space. Her friend Kristen was there and that always makes Allie happy. Well Kristen left and suffice to say she was god for a little while then - well let's ust say I started this blog in her room and now I am in the rec room. If it weren;t for leaving Nancy stranded, I probably would have gone home already - just being honest.
I know we are luck, and I know hundreds of people would trade places with us in a minute but when you are in the moment it is sad, heartbreaking, frustrating, angry ........ You leave for a few minutes and rationalize it and try to start all over.
Full Recovery - Never A Doubt
It's not Allie - It's the injury
Allie's Dad
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3 comments:
Oh ouch! This is difficult! My mother was diagnosed last August with breast cancer and after an op was taken into hospital again around November to sort out her pain meds. Now she was never and easy lady but boy did we and they have trouble!! To be truthful, like yourselves, there was 'problems' with some of the staff but some of it was just her fear. Screaming matches, and threats of leaving the hospital were constant. I know its not the same as brain injury patients but the pain on your side is. I feel for all of you. My prayers for you continue - and please be careful with that St Johns Wort - its wonderful but you must know that it interacts badly with some other drugs. Please don't post this if you don't want to - I know somewhere there is a direct email address for you but couldn't find it. I hope you don't mind. Love and continuing prayers for Full Recovery and your continued strengths. SusanJ
Dearest Cagens, My heart goes out to you, but this is what you will be dealing with for awhile. I am so glad you realize that it is the injury, but it is coming from Allie, which is why it hurts. I believe what hurts the most is that for these past 64 days you have given everything you've got to this precious child and you feel unappreciated. PLEASE know this will be your feeling for awhile. I think you did the correct thing by taking her back to her room, but try to not engage her in any conversation. She cannot mistreat you if you don't let her. Once in her room and safe tell her good bye, I love you and will be back when she can treat you nicely...Maybe in a few hours. If she starts up again, LEAVE her presence. She is frustrated and you always take it out on the one closest to you with unconditional love(parent, spouse)The rollercoaster idea is right on target and because no one has been with her a very long time they won't see her negative behavior, but I know it is there and so do the professionals who work with her. PRAY,PRAY,PRAY, that is ALL that is going to give you the strength to get through these difficult days. YOU ARE DOING AN AWSOME JOB and don't forget it...Mary
Hi Y'all
Just wanted to say we're thinking of you out here in Wyoming.(On our way to Oregon.) You are all great, tough, strong wonderful people. Just remember, rollercoasters sometimes feel like they never end, but if you just hold on, it will end, and someone you love will be waiting for you when you get off. Hang in there.
Jeremy & Renee'
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