Today we’re venting. And I know, on the surface, this might sound like just a list of complaints, but stick with us. Because there is a time for solutions. There is time for action. There is time for making change.
But before all of that, we need to acknowledge the problem. And not only that, we need to accept and make space for our anger.
Anger isn’t only a negative emotion, as long as we know how to use it. It can eat us alive, make us attack our allies and peers, and distract us from our most important goals.
But it can also empower us and protect us from exhaustion and overwhelm and everything else life throws at us.
So today, we’re not *just* listing our complaints (although, sure, there’s nothing wrong with that.) We’re also reminding ourselves of our motivations: the anger that keeps driving us when life is wearing us out, the priorities we have to keep in check when we want to lash out, and the goals that keep us moving forward when we want to quit.
Alright. Let’s rage.
I’m angry because the community of medically complex and disabled children is growing each day, and the budgets needed to support them are…not.
I’m angry because some people look at my child and wonder, “What is the point?” (and I’m not allowed to slap sense into them.)
I’m angry because I trusted medical professionals to take care of my child, but some of them didn’t make decisions with their best interest in mind.
I’m angry because “I’m sorry” is the first response I receive after telling someone my child is disabled. Well, I’m not, Karen. I’m not sorry about it!
I’m angry because everyone tells me how “strong I am,” but no one seems to notice how much my family is struggling.
I’m angry because I lost friends and family when I had a medically complex child.
I’m angry because the lack of systemic support for my medically complex child has hurt our entire family.
I’m angry because I don’t know what will happen to my medically complex child if I pass away before them.
I’m angry that “saving the children” is a great campaign slogan… but it almost never includes medically complex kids like mine.
I’m angry because I’ve heard, more than once (let’s be real, more than a dozen times), that my medically complex child would probably be better off dead… and the speaker really thought that was the more compassionate choice.
I’m angry because my child is constantly over-medicalized and under-appreciated for the brilliant, personality-filled kid she actually is.
I’m angry because when our society sees disabled children, people are quick to make negative assumptions and judgements about the actions and choices of their parents.
I’m angry because pre-natal education led me to believe that if I did everything right during my pregnancy, I would have a healthy child.
I’m angry because the NICU make me feel like I had a village, but that illusion faded quickly once we came home.
I’m angry because my family does not celebrate my disabled child’s life in the way same way that they celebrate their nondisabled cousins and siblings.
I’m angry about the amount of $$$ spent on pre-natal health education that is centered on making families fearful of having a disabled child, rather than using that $$$ to support disabled children and their families.
I’m angry that our lives, as a family with a medically complex child, are constantly at the mercy of other people’s schedules and agendas. Rarely, if ever, our own.
I’m angry because caregiving has changed me. There are so many traumatic things that I will never unsee, unhear, and unknow. There is no unlearning the stuff we learn as caregivers.
I’m angry because no one was honest with me about what the future might hold for my medically complex child.
I’m angry because I have to live with the anticipatory grief for both the life or death of my child, and no one understands this as well as a fellow medically complex caregiver.
Like we said at the top, we’ll get to solutions. We want solutions, not just rage. But we have to start with the anger, because it’s a tool we can use to make the change we truly need. We don’t have to let us destroy us. We can use it to create too.
Until next time, caregivers <3
