We have decided to become mature adults and begin our estate planning. Gosh, I sound like a Trump. However the older we get, we have to be responsible and make sure Bridget is protected. Although she is young, her care is a lifetime decision. One that will be impacted by the whim of our government and by those who we choose to care for our daughter.

Which lead to one of the most intriguing discussions David & I have ever had and it all started with our burials. We both have completely different ideas on how we want to be memorialized. Rather, how he wants to be immortalized and how I do not understand the whole purpose of graveyards and being interred.I hate yard work and bugs. I watched way too many horror movies as a teenager, if he buries my ass I will come back and haunt him.

The discussion turned serious when it came to guardianship. It’s not that we don’t love and trust everyone to care for Bridget. Her sister would be the best choice and probably expects us to automatically chose her. Yet she has to graduate elementary school, high school and beyond. Is it fair to to say at 21 years old you are now responsible for the life-long care of your sibling? Understanding their relationship I know it would not be seen as a ‘burden’ but in all honesty whomever cares for Bridget it will be a burden.

Whomever is the guardian of Bridget will have to relocate, learn every therapy and medical treatment. They will have to learn to become Dr. Google, to advocate and navigate the IEP process. This person will have to have infinite patience and a capacity to love when she is at her most unlovable. Their career and family will be affected. They will work less and have to put Bridget appointments before their own schedules. If they do not move to our home, their home will have to be modified. We have to trust that the person(s) chosen will not put Bridget in a group home, but that she will be a member of their family.  It’s finances and insurances and government agencies. It’s knowing that whomever is chosen will need to become Bridget’s Warrior and chief medical officer. That they understand this isn’t a “until she goes to college” commitment but a commitment for life. Her life and theirs, until her sister is capable of taking guardianship.

Thankfully the odds of David & I killing one another or dying together are slim and this is (hopefully) theoretical. Yet it hit home for both of us, that we take for granted Bridget will be with us for life but what if we are not there?

This was originally published on Kerri’s blog, Undiagnosed but Okay.