February 27, 2015

When a parent dies- Fragile x Guardian

I didn't know if she had months or years left on this earth but her health was declining. I had heard it happens frequently after couples who have been together for decades are tragically separated by death.  Her beloved husband of some sixty years had died the previous year. It was decided now was the right time for her to transfer guardianship; a sad but necessary reality for aging parents with disabled children.

She looked into my eyes and said “I know you're going to take care of my baby girl.” After thirty plus years of friendship it was as simple as that. I nodded my head, making my promise to do just that. The details would be ironed out later. 

And so my guardianship began and my relationship with her daughter took on a new dimension. ( I will save my explanation of the actual guardian process, education requirements, attorney involvement, court involvement, background checks, and the paperwork required for another time and post) but i will say now that took roughly four months for the entire process to be completed.

And sadly one of my first tasks as guardian along with (her caretakers) was to began a coordinated effort to prepare her and see her thru the decline leading up to her mothers death. 

Coping with her mothers declining health was frightening for her at times. We needed to be sensitive to her emotional needs and respect her decisions and never force her to visit her mother if she wasn't feeling up to it. She did well however and visited quite regularly though for the next year.

Then the call came; mom had died. I quickly made arrangements for a flight out and coordinated with the house manager on how we would approach telling her that her mom had passed. 

The three of us sat together in close a circle in the office of the group home and I told her that her mother had gone to heaven. She looked down at the floor, my heart was breaking for her. I thought about the sadness we feel when someone we love dies, the anger, the tears and how missing them sometimes makes our insides hurt. Truthfully I was feeling a bit of all of those emotions myself having lost my dear friend. So I told her she may feel those thing herself and it was perfectly ok if she did.

The holding my breath I asked her “would you like to tell me how you feel?” She looked up and me and said as clear as a bell, “happy.” I was stunned! “Can you tell me why you're happy?” She has very limited verbal skills she usually can put three words together in a sentence but rarely more.  Then in a clear voice filled with conviction she said “ mommy and daddy are together, I'm happy

What a beautiful thing!