We've recently been working on some legalities regarding Taylor's ongoing care and future. To say it has been overwhelming would be an understatement, but there are things that must be done and decisions that must be made because the trusted attorney we worked with five years ago communicated that our case had become too complicated, and he needed to refer us to someone else.
I was thankful for his honesty and did not want to go to a new law office, but we had no choice. The practice he referred us to was located about 45 minutes away from our home, and that made me even more apprehensive about the change.
At the beginning of our story we were fortunate enough to have a connection to a critical care nurse who understood TBI firsthand. This nurse had a brother who had sustained a devastating brain injury, which had altered much of his logic and personality. His parent’s had been through some horrific ordeals that would have been much easier had they had the power to make decisions on their son’s behalf. One night under the dim lights of the intensive care unit, this nurse urged us to start the ball rolling regarding power of attorney, guardianship, and other legal semantics. Without his gently shared knowledge, we would not have known that those things needed to be addressed.
So shortly after Taylor's accident, we had to appear before a judge to gain legal rights on a few levels. The judge at the time was both merciful and kind. He made what could have been complicated, simple and what could have been time-consuming, short. That day sits inside of my bones.
Recently after playing a long round of phone tag, I finally touched base with the new attorney’s office. We talked business and set up the appointment. Then the person on the other end of the phone said, "I don't want you to think this is strange, but I'd like to ask how Taylor is." She went on to explain that she knew Taylor before his accident, through her husband. She told me what a nice young man she found Taylor to be. I opened up to her a bit and even cried with her. She was comforting, and due to the nature of her career, she had some understanding of the depth of our trauma.
At the end of the conversation, she shared that the attorney and team who would be working with us were highly skilled in long-term care laws. She said, "They know your story, and they are good people."
I believe that all people should be treated with tenderness and respect. But I have learned that having someone in an office who knows you can be a good thing. This gave me comfort and peace, in what felt like a tumultuous situation.
My friend Kim would call it a God-wink. For me, it was a reminder that even when a situation feels big, scary and overwhelming, there can be someone who is already a friend on your side.
Fast forward to the day of the meeting. Allow me to warn you, if you have to attend one of these meetings about the long-term care of anyone in your life, it will feel overwhelming. But when you are discussing the care of your disabled child, it is crushing. As I sat at the round table for the initial consultation, I held my breath. Thankfully, it is rare that the entire brutality of brain injury sinks in, but when it does, it makes me want to run. However, running is not an option.
We learned a few things that are important to know.
- Most qualified attorneys will provide a free or low-cost consultation. After that, things get expensive. They just do. It is not fair and feels disheartening, but accepting that you want a good attorney who knows the laws to handle your case is critical. That knowledge is not cheap.
- If you have an impaired loved one (child, spouse, sibling) that you care for, you need to have a will. It is important to have decisions regarding not only your estate, but your loved one’s wellbeing and estate in place. We never expect the unexpected, and we can’t rewind once it comes. Planning for the future helps us let go of some of the fear that can surround it.
- Power of attorney and guardianship represent the ability to make complex choices for a person who may not be able to make them on his or her own. If you do not have those powers in place, you or your loved one may one day find yourselves in treacherous territory. Explore your options, reflect on the best plan of action, and then make the tough choices. You will feel better once you do.
- Often these are things that we want to avoid. Important decisions are no fun. Being a grown-up is scary. Being a caregiver and holding power of attorney is scary, too. But what is far more frightening is being faced with a moment when you realize things might have gone smoother with a plan in place.
My son’s brain injury has taught me over and over again that I often have little control over life’s circumstances. But that does not mean I throw caution to the wind. I do the things that are required of me, and the things that help me sleep at night instead of filling my head with what-if scenarios that can add more angst to an already stressful situation.
And most importantly, when there is a kind voice on the end of the line, I let my soul hear it, acknowledge it and soak it in. Life with brain injury is hard enough, so when the universe reminds me that I am not alone, I embrace that moment.