Lets face it our kids will out live us. This usually is not an issue, as it is a normal part of life.
For some of us this is a real concern because of our children have special needs. I think for good reason we think of this more. Most of our kids will need some sort of help & some even life long help, depending on the severity of their autism. I have seen so many blog posts taking on this subject. Yet most deal with after our kids grow up & we are old. For me it is a little different. I may not see my youngest grow up.
I have mentioned before I have cancer. Not just any cancer but Neuroendocrine an incurable type of cancer. It is manageable to a point & right now controlled somewhat by medication & a form of chemo I will have to do for the rest of my life. I may live a long time with the cancer managed, but lets be real, right now from onset of the carcinoid syndrome a person has between 15-25 years. There are those who have lived longer & some not. It is a real gamble. It depends so much on how fast the disease progresses. I am 6 years in & my disease has been fairly stable until the past 2 years.
PA is 4 years old & I have between 9-19 years. Which means she could lose me when she is 13-23 years old. This is scary for me. She will still have her dad & older sister. However this kind of haunts me & I think of it often. I try not to dwell on it, but I need to start planning now. My biggest fear is I have no idea how much help she will need & who will be around & willing to help my family.
I know I am not the only one who may not see their child grow up. I am not the only ill parent in the world. I also know in a few years I will need more help caring for her & my own needs. I know I will be around for a while but I have no idea in what capacity I will be able to care for her.
I am just now starting to really look at all of this and it is a little overwhelming. I wish I could say I am putting money away into an account for this, but I am not. Nor will I be in a position anytime soon to do so, because both my husband & I are disabled. We use all of it right now to care for our two daughters. Now. We don’t have any extra to put away fro a rainy day let alone to have anything saved for when I am gone.
This is where my OCD thoughts take over and run amuck. My biggest fear is I will not have anything for my girls nor will I be able to have anything set aside to help my youngest with whatever she may need as far as help in the future. I still have no idea how independent she will be. She is on the higher functioning side of the spectrum & I know she will be a functioning member of society, but she will always have things to battle and she will need some sort of continuing care.
Sometimes life seems so lopsided that I even have to think of this now & not 10 years or more down the road. There are so many things I still need to look into like wills & other things. I think they should offer classes or something. These are just things that go through my mind & things I am dealing with at this moment in time. I did not mean for this to be a platform for me to be like “Oh look at how bad I have it.” or for anyone to feel sorry for me. This is just my reality & what I face every day.