When it rains it pours. What an apt adage for the troubles of life. I can’t speak to how others view their life, how it compares to mine. I can only speak of my life, my views and my opinions.
Sometimes, it feels like I am in a world isolated from everyone in my life. I suppose that everyone feels this way at one time or another, but I am often in this isolated space. There are times I consciously put aside those feelings as they serve no purpose other than to upset me. There are times I cannot. Times when my reality is so outside of everyone else’s experience that I feel I am from another planet. I feel I am an observer, standing witness to a species of beings and their doings that is alien to me. I converse in groups of friends, family, people, and feel a detachment of connection. It isn’t anyone’s fault, there is no solution, I search for no help. It is not something that needs correction.
It just is. Like the sky is blue or the sun shines.
It is my life and it is different, harder, raw.
I find much of my life is spent making others comfortable with our situation. They need encouragement that things are going well, that I can be happy in this situation, that my daughter is happy, and that we fit into the normalcy of what is expected of this experience called life.
But we don’t. We are so far removed, that we have our own universe. So many times a friend will ask how life is going, and if I don’t respond with an upbeat, can-do attitude they are so uncomfortable and edgy that my candid answers die on my lips unsaid. Or the flip side are people who think a chance meeting in a gathering is an appropriate place to cross examine me about what is going on. Neither is encouraging. Both highlight my “different” status.
Still, we are all human. I am not some perfect being, always there for the people I love and care about in the ways they need. I understand that this is the cost of being a human and living in society. We bring our disconnected good intentions with us.
But it can get lonely when everyone is talking about their free mornings while their kids are learning in a safe and happy school environment. While you bring your kid to school to realize that the teacher doesn’t know how to include your her in any shape or form, and you find her facing a wall and isolated away from the rest of classmates, and all your attempts to help connect the teacher to your child is aggressively rebuffed.
I might be living this unusual life for over 10 years, but I am still not completely immune to the cruelties my daughter faces. So, I find myself sobbing in a classroom, in front of a bunch of kids, and packing my daughter’s things to take her home. I find myself completely overwhelmed to be in yet another situation where our family is excluded and isolated. Where the only way out is for me to fight and claw out of a system what my daughter needs to just be able to go to school to learn and socialize with her peers.
And I will do it, because I am her mother and her advocate, but I am so weary of this continual cycle. I am completely deflated, because I know what it is going to take to get her what she deserves. Lets be clear, it is not even asking for something beyond what a school has in place for my kid. It is asking for her to simply be treated as what she is. A human being.
So you pick yourself up and keep going. A morning of making calls, and applying for grants, and struggling to get your kid to therapy after having wrestled her in and out of 4 different pieces of equipment just so she could take a bath, use the toilet, sit safely while you feed her breakfast and her meds. You leave message after message looking for the right path for her.
You keep going, even as straw after straw is added to your back, because there is no choice. The straw doesn’t always break the camel’s back. That would be too easy. The other camels think that only you can handle the load, so they pat you on your hump and smile as you pass.
Because the sky is blue and the sun shines. It just is.