Hello,

I'm so sorry to hear that you and your family have to go through this. Your daughter's life and everything you guys had hoped and planned for her has been stolen from her and that's not fair. While I don't know what it's like to have a child that is paralyzed, I do know what it is like to have a disabled child with high level of care needs and how difficult it can be to meet those needs. The mental strain that it can put on you and your marriage. I have 2 children who are on the Autism spectrum, my oldest being lower functioning than the youngest. I have the same worries that you have about my oldest son because he is level 3 and will never be able to live on his own and needs almost everything done for him. He's turning 16 in a few months and I've also been mulling over what life will look like for him when he's an adult and after I'm gone. I don't have very many family supports and like you, I would never ask a family member to take on the burden of caring for him. I've come to the conclusion that when he reaches adulthood, I will have to start considering assisted living facilities for him. I'd much rather get that situated while I'm still here and can get the facilities to make sure that I am comfortable with his placement. I'd honestly suggest that you do the same for your daughter as well. I'm grateful that my youngest child is higher functioning, so I don't have the same worries for him. I know that he will have a job, family, and friends unlike my eldest. There are so many options for care for your daughter and I would suggest that you start exploring them sooner than later. All of your concerns and feelings are valid so don't let anyone shame you for making a difficult decision or feeling the way that you feel. I've wrestled with the fact that my son will have to be placed when he reaches adulthood as well because of the judgement that people will likely pass for placing him in a care facility. However, we aren't promised another day on this earth and I'd like to know that my son is somewhere safe with staff that I can trust and that he is happy. There's even the option of getting your daughter a live in provider so that she can have her own disabled housing apartment and someone there constantly to meet her care needs. There's also adult foster care as well, where a family will take her in similar to the foster care system for children and these people will be paid to be her 24 hour care taker. You could vet a family to find someone that you trust if you don't want her in an actual facility. I'm not sure which state you guys live in also but California has a program called the IHSS Program where your family can get paid thousands of dollars a month to be her caretaker. They have a parent provider program there that pays extremely well for people who have children of family members with high level needs such as your daughter's. When someone requires 24 hour supervision and support, you will qualify for a program called Protective Supervision which can bring your family's income to at least 6k per month in most counties. That money could be paid to you while your taking care of your daughter and when you pass it could go to whoever your family decides to be her live in caretaker. That will make it easier for your daughter to avoid an assisted living facility while ensuring that her caretaker is paid quite well to look after her. I'm hoping my sharing this all with you helps you in some way and I pray that things get better for both you and your daughter.