My family has dealt with our fair share of death in the last 6 months. In January our grandmother died, 6 months later my Sister-In-Law lost her husband. When you are left to make the final arrangements for those you love or help those you love make final arrangements for their husband, it’s hard not to think about your final plans.
I had a very honest discussion with my husband and told him my wishes. We made sure that we discussed what would happen with all of our kids, but more specifically Lil Man and Lil Girl. You see the reality is is that there is a big chance that my younger two children will not be able to live on their own. They may need support for the rest of their lives. Should I expect that my oldest child (barring that she is of legal age) be responsible for her siblings that are 2 and 4 years younger than her? Should I demand that she be their caregiver and have to give up her dreams and ambitions in life? These are just a few of the questions that we have to face as a special needs family when it comes to planning for life.
Call it selfish, but I refuse to demand that my oldest child give up her life goals. If she wants to make that choice she can, but I will not force it. The reality is there may come a point, even before I die, that my younger two children may need to go into a residential program. That day is not today, but it may come in the future. We have started planning for this. We have applied for the MedWaiver, since the waitlist is well over a ten year wait. We have our letter of intent written, and will be starting a special needs trust fund in the near future. None of this is easy to talk about, but if we don’t what will happen to our children when we are no longer here to care for them.
With all the death that has surrounded our family lately we have also filled in family members on our wishes. They need to know. They need to have a game plan in mind should something happen to me and my husband. It sucks to do it, but it has to be done.
In explaining our choices to one family member, I was damn near shammed for my decision. I was told I shouldn’t be allowed to just “ship” my kids off to some unknown group home for them to live away from family.
You see, I didn’t come to my choices lightly. I didn’t wake up one morning and say “Hey I think I will just stop caring for my kids” None of us do. We fight long hard battles, we fight with ourselves, we question ourselves, we even end up with the bruises to show for those fights. No one, even family members, has the right to try to make us feel bad about what plans we have put into place for our children. They do not live our life, they are simply the visitors who pass through it occasionally.
When I made my choices, I knew they were subject to change based on my children’s current levels of need. I will not back down from my choices, I will not defend them to people who do not live my life. I will stand by my choices and change them as our needs change.