I have entered in the deep dark abyss of adult services, adult funding, and adult disability. Fully knowing that this was coming, I am still beginning to understand and scratch the surface of emotions. Not just the intellectual and logistical skills required, but the emotional ride that comes with battling this new beast.
Venturing into this area of my life with my girl has definitely cracked open my heart. I am reminded on a daily basis of the vastness of her needs as I complete countless piles of paperwork. The examples that I come up with to describe the impact of disability remind me of a time long ago when I was beginning the fight of my life to get appropriate IEP goals and appropriate supports.
I am being reminded of how hard it has been to be her mom–not to love her–but to be her mom. Hard to find that ease within an interaction where it isn’t always work. Hard to share emotion with her. Even hard to sometimes find joy. And always the continuous struggle of being her life line.
Always her life line.
Navigating these waters means that I am facing the reality that I am not going to be her eternal life line. I am seeing the reality that eventually she will have to turn to someone else for confirmation, for support, for advocacy, for validation, for the intuitiveness that is needed to read her.
So with the great disappointment that this state does not see nor value the needs of individuals with disabilities, I continue to venture into the unknown. I will continue to turn over every stone with the intent that something will be found and be useful, and I will continue to be her life line.
It also may not hurt to have my fingers crossed that someday, someday in her lifetime, I will not always be her only life line.