Saturday, September 15, 2018
This week has been emotionally exhausting...more so then usually. Although we expected a physical decline, it has been a lot of mental/emotional issues as Taylor struggles to try to understand death. She has become very fixated in her thinking, and is extremely resistant to switching thought patterns. This means she gets extremely frustrated, crying and angry, swearing and physically can lash out on herself or throw things.
Taylor is now repeatedly telling us she wants "to die". She is in distress, and we struggle to help her understand what is happening. It is so exhausting. The last 4 days have been consumed in the vortex of dying, Taylor pleading to die, asking doctors to kill her so she can go to heaven, Taylor packing for heaven (she compulsively wants to pack, as she worries heaven might not have everything, no matter how much we assure her), making lists (I think it is an OCD tendency that calms her), and wanting to buy journals and agendas by the cart load to take to heaven. She is not able to be reasoned with on many of these topics. You think you may have her understanding and then she snaps back to her old thinking.
So I have been a bit busy and try to get back to people, but my days are very long. I will get back to people. I know many want to help with her bucket list, but it is small and its hard to coordinate some areas as its dependent on how she feels. Taylor gets overwhelmed with a lot of people. She likes routine, and to know the people that are around her. Many want to make things happen in a big way, but that is not Taylor at this point.
Halloween is supposed to happen today, I am hoping people respect that Taylor does not need a carnival aspect, she wants a "regular" Halloween in her neighbourhood....NORMAL. I think everyone deals with being sick, dying, etc. very differently.
Tomorrow we are having Christmas. I will try to find time to post some pictures. Likely they will be found on the Facebook page (A Wish For Taylor) as its easier to post them up there.
We are a very close knit family, private in many ways. I know me sharing so much information with everyone makes it seem like we are not. I started the blog way back 10 years ago because I saw my baby sister hurting and overwhelmed beyond belief. I saw my brother-in-law collapsing under the strain of having a baby that was suffering, and they were so overwhelmed by people I had to take over. I keep this blog so that I can help facilitate people that want to help, that want to know how they are, how Taylor is doing, without them having to be bombarded with people, well meaning, but not grasping what it is like to have everyone checking in on them and offering support.
Having a sick child is the frigging hardest job in the world. Mindy and Landon are AMAZING parents, as are so many that have sick children (both physically and ones suffering mental illness).
So please be patient with us. I will get back to people when I can. Sometimes I may have to decline generous offers as they just are not what Taylor would want, even though they are extremely generous. We do value privacy. Please do not contact Mindy and Landon directly unless you are inner circle (if you are not sure ask me), just contact me. I always let them know and will share your messages when appropriate.
Leah Sacha (crazy aunt of Taylor, sister to an AMAZING Mom, and sister-in-law to the most AWESOME Dad)