I ugly cried at the probate court office last Friday. A complete blindsiding of emotions and tears. The kind of crying where emotion so strong takes over that your body forgets how to breath appropriately. You find yourself struggling for air whilst frantically searching for a Kleenex in your bag. The kind where you feel the need to turn around to attempt to console and calm yourself, lest the court clerks begin to question your sanity and whether or not you are even mentally fit to make such decision as to sign away guardianship of your daughter to your husband. Because I am becoming her paid provider since she turned 18. And for some reason in this legal system where you are required to claim guardianship over your adult child who is being legally deemed “incompetent,” you cannot choose to be both her paid provider AND guardian. And that just feels wrong and sad and unfair...
Typically when I have such deep emotions I can sense them coming or feel them on the edge of release. But this time I did not see it coming. I would have preemptively made sure I had a new pack of Kleenex and would have attempted to calm myself before entering the building. But on that day I felt focused on the process. Figuring out how to obtain guardianship was no easy matter. There is paperwork upon paperwork, trainings, doctor's notes, and forms and a lot of confusing court jargon to cipher through. And once you feel like you have all of those things in order, you have to drive down to probate court to submit it all in order to request a hearing to make it all official. In the midst of Paul and I getting the paperwork together and him sitting through the hours of online trainings, I have been going through a different process of becoming a Medicaid provider because now that Rylie is 18 I can actually be paid through her waiver as her caregiver. But that paperwork and process has been equally as daunting requiring so many documents, forms, and doctor's signatures and initials in addition to my own online trainings, etc. SO, when we pulled up to probate court that day I was focused on the process of it all. Just get it done. Next steps. Because everything has just been overwhelming to say the least. The last few weeks have just been robotic in attempts to complete it all. And I knew it felt weird that Paul had to get guardianship and the idea of my firstborn becoming an actual adult is all a lot to process in itself. But I just simply haven't had the time or capacity to focus on what it all really meant. So standing in that probate court office with all of the clerks, and hearing the one clerk ask questions about our daughter and double checking all of the signatures, it suddenly began to all feel super weighty. I physically felt it rise up inside of me. An emotion that I have yet to fully put a name to. But whatever it was, it came in full force demanding to be felt as though it was tired of being ignored. It demanded to be present. And so as the clerk looked at me to make small talk as Paul was finishing up some signatures, she asked if our daughter was 'high functioning' and I guess that was the tipping point. Tears came spontaneously and I couldn't catch my breath. Frantically I dug for a tissue in my bag as I backed away from the clerks counter where Paul was signing. "What is happening?!" I thought... I couldn't figure out where it was coming from. The clerk handed me a tissue and consoled me by acknowledging that this was in fact hard. Thankful both for the tissues and the fact that they were soft and not the texture of sandpaper as one might expect them to be at a place like a courthouse, I proceeded to turn around and try compose myself. Except that I couldn't. All I could do was soak up all my tears with the soft tissues and focus on trying to inhale enough oxygen because in that moment my entire body just felt stunned, in full panic mode.
Eventually I was able to calm myself for the last few minutes of paperwork and getting a hearing date on the calendar. I made it outside into the cold air and continued to feel it all, sobbing as I climbed back into the car. My mind racing to figure out what it all meant, why it was suddenly feeling so unbearably sad. I still cannot fully answer that question. I think maybe it is a combination of things. Maybe it was feeling like something of my identity was being stripped from me as I signed over full guardianship to Paul. I am still her mom, but it just feels like I should also be able to have a title of guardian. (an option that as of now we are told is not one that is likely to be granted to us both since I am applying to be her paid provider) Or maybe it is just the sheer fact that we have to 'file for guardianship' for our own daughter. That heavy reality that she will never be able to be fully independent, that she will fully rely on us for everything for the rest of her life. That she is legally deemed 'incompetent' and is unable to make her own decisions about care. Maybe it was grief and the culmination of 18 years of parenting and caretaking for a child with a disability and many complex medical needs all rising to the surface into a new reality that your child who is now considered a legal adult, yet cannot fully function as a 'typical' adult. She cannot experience full adulthood in the ways we would have hoped. It is almost as though we have lived this life with her for 18 years and now someone showed up at our doorstep with a megaphone telling us all over again the sum of what it means to care for a child with such significant needs. As though we needed such reminder. It also felt cruel in a way, because instead of celebrating this milestone with her entering adulthood and making the process of guardianship seamless and as easy as possible, it was just like everything else in the world of disability and medically fragile and Medicaid. Impossibly difficult, confusing, daunting, and dreadful. Instead of giving straight forward guidelines and helpful tools for the process, it has been something we have had to ask multiple people questions about, attending online informational meetings about it, and trying to sort though legal court jargon on the website where the paperwork is located. It was just another challenge to overcome. One that makes you feel like your child is just another number in the system. So maybe, it was just all of these things, plus a million more that brought the sum of my emotions ultimately to the recognition and reminder of the message the world has given us since the day Rylie was born: Your disability affects the measure of your worth.
This may seem dramatic but the truth is, that the world as a whole does not see people like Rylie as a valuable person. I can state that from experience because we have lived it with our daughter. Her brother has cried tears even as a young child when he experienced the way people blatantly over look her or stared at her in disgust because of her differences. And while there are many people who have seen Rylie for who she is and loves her unconditionally, the fact is that there is still an entire world out there who does not. The world continues to convey the message that people with disabilities aren't valued. And so I think standing in the probate court office triggered all the emotions and hard things we have fought through and lived through these last 18 years. It was a culmination of all the things, feeling her lifetime of disability, years of advocacy, and the weight of having to legally obtain guardianship for our own child.
These experiences we have had with our daughter continue to change and mold us, but also make us hyper aware of all of the broken systems and injustice within the world of disabilities. It has heightened our awareness to realize the extent to which this population of people continue to be overlooked. And while it often feels like an uphill battle, I continue to fight for these challenges to move us to change for the better. I attempt to try to funnel all of that frustration and pain and pent up emotional energy into a drive to make change and be the difference while finding ways to encourage others to do the same. But it often feels like I am a lone soldier in an uphill battle, or that I am standing on my front porch speaking to the world but my voice will not carry beyond the end of my street. I need a larger microphone but also I need more soldiers for my army. 18 years in the world of disability and medically complex needs changes you. It grows you into an advocate and a fighter, and you find a strength you never knew you could have. But it also weighs on you because of all of the years you have lived the reality of existing in a world that overlooks those with disabilities. And I don't think it is because those with disabilities are difficult to see, I think it is because the world is not looking. They are not really seeing. And when they do have the opportunity to see, they will often choose to look away because seeing is acknowledging and acknowledging forces you to choose if you are going to be a compassionate human being or not. And so purposeful ignorance is often chosen as a way out. An excuse to not do more, to not care more. Because ignorance is bliss. Right?? The kind of bliss you live in when you avoid anything that may take you outside of your own comfort zone, including simply seeing another human being's worth beyond their physical disability. Because while every person is a human being, unfortunately not every person is treated in a humane way. We often associate the word 'humane' with how we treat animals. But the fact is, that the word itself, while it can refer to treatment of animals, is clearly related to the word 'human.' But how is it that in our current society that we often see people more concerned about treating animals in a humane way than being concerned with how humane we are treating other humans? The definition of the adjective 'humane' is:"marked by compassion, sympathy, or consideration for other humans or animals" (Webster's Dictionary). And so if humane is defined as having compassion and consideration for other humans, then what does that make those who are not treating other humans with care and value and consideration?... Because ignoring someone is not caring. And purposefully overlooking someone is not compassionate. Therefore it begs the question, " Where is the humanity??" Where have we gone? What thing or idea has such a hold on our desires that we are willing to treat other humans as less than? What is SO important that it is worth sacrificing the extra time and effort to see and care for those who need the extra care and support? When did we become okay with choosing not to see and, in essence, communicating the message that people with disabilities are less important than those without disabilities? So many questions without answers that have yet to be sought after. And, why are we not asking MORE questions? Questions like:
How can I help? What do you need?
What is driving this lack of humanity?
How can we do better? How can we be more supportive and inclusive?
What is REALLY important in this life?
And then there is the one simple yet powerful question that could probably break more barriers and walls if more people would just be brave enough to go up to people with disabilities and ask:
"What is your name?"
Because when you ask a personal question to someone inquiring about their identity, it is the first step to acknowledging them as a person. A human being. And when you start with that ONE question, it could be the difference between a wall and a new friend. When you choose to take the first step to acknowledging and meeting someone in a humane way, you are taking first steps to crumbling stigmas and assumptions and stereotypes. By having a posture of care and interest and simply looking into someone's eyes and truly hearing them and seeing them for who they are, you are choosing to be humane. Compassionate. Considerate. And if we are in fact humans, then maybe we should start acting more humane after all...
Friday I ugly cried at the probate court office. I'll be processing those emotions in days to come, but somewhere in the midst of all of those tears, I know there were also tears of righteous anger and desperate hope. Crying out after 18 years of living in a world where we have experienced the ache of Rylie being overlooked and undervalued. But I know that even though they were tears, that those and all of the ones I have cried up until Friday have all continued to water and grow a drive and purpose and resoluteness inside my heart that could not have grown without them. It has fueled in my spirit a determination to speak up for advocacy and inclusion and given me a fiery passion to help others to be seen and heard. To speak up for those who cannot speak up for themselves. And to demand the world to see those who they have overlooked for so long. But I am only one voice. So, are you with me? Will you see with me? Let's show the world together what humanity is really all about.
What is your name?
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