I feel like I’ve been shoved down the stairs. I had a startling self realization today. A friend posted this link about a mom who mapped out the support/care system for her special needs son. When I first looked at her map, I was amazed by the number of branches and twigs that stemmed from the middle. I first thought, wow, I guess what I’m dealing with taking care of Zach isn’t so bad. And it doesn’t always feel like a lot. It’s what I know, and what I’ve been doing for three years. I looked deeper at the map and noticed how Zach’s map would share most of the same branches. I started running through my head the names of therapists, doctors, etc. that have worked with him over these years, then of all of the friends and family who have helped, and the people I’ve met online and through Facebook who have kids with the same condition, or have the condition themselves.
As I read the article, I related to the Welcome to Holland parable. When I was a regular on the January 2010 Birth Board on Babycenter.com, someone sent me a link to the story after I posted about Zach’s ordeal. I have since met many other parents, online and in person, who have similar journeys. I wouldn’t compare it to juggling. Instead for me it feels like I’m spinning plates at the circus. I have to keep each one going, giving each a twirl so it can keep spinning, watching them carefully, seeing which one needs the attention, knowing if I don’t keep up with all of it, one will fall and take the others crashing down. It’s exhausting. And I don’t seek pity.
Later in the article, the mom says “no wonder we had so many piles of unfolded laundry.” That’s when I felt like I was shoved down the stairs. I have those piles. I also have piles of dishes that get dealt with when they get dealt with. There are piles of papers, junk mail, bills, kids’ schoolwork, and artwork that pile up. Sometimes the bathrooms get cleaned in stages over a period of several days. And the laundry? It’s great just to have the clothes clean. Folded and put away are icing and sprinkles on the cake. When things become incredibly overwhelming, like where I’m at right now, my goals are: 1) healthy food in the kitchen, 2) Clean clothes, and 3) clean dishes. This encompasses the basic needs daily chores met. And then I go from there. I said here that every two weeks I get the chance to get my house sparkling. And how do I accomplish that? Because on those two days I have no one to take care of except for myself.
So, what makes your piles so different, Sara? They aren’t different. They aren’t special. But they have been ridiculed. The sight of them have caused me to be called lazy. I have been accused of not pulling my weight. And it hurts. Like all moms, I feel the heavy guilt of not being able to accomplish everything that needs to get done for everyone. I have sacrificed myself in the process. Reading that another mom has these piles and knows they come with the territory made me cry. It seems obvious that the piles should be okay. But they aren’t okay in everyone’s mind. My friend suggested I draw up Zach’s map and hang it on the wall. It can serve as a reminder for me and others what I have to keep in mind and manage, all of the names I have to remember, all of the appointments and schedules. What isn’t written in the article is how the map for Gabe is just his map. They could be drawn for each member of the family. Special needs moms with more than one child are juggling the map with other kids and their needs and activities, and in some cases, the needs of their spouse if they are extensive. If I were to make a map encompassing the family, I would probably be best served with a 3D model made of Tinker Toys.
So, my stark realization today is something I knew all along, oddly: the piles don’t matter. As long as everyone is taken care of, all is good. The appearance of the house is no indicator of the level of care and happiness the children receive. If a pile of clean laundry in a basket remains unfolded for two weeks, but I was able to take Zach to three doctors appointments, drop off and pick up the big two from school, give them good food, help them with homework, read books to them, and basically give them the love and attention needed, then that unfolded laundry pile signifies a success. I will draw my map, and when I’m feeling inadequate, or letting someone else’s words rip apart my efforts, I can look at that map (and a laundry basket) and know I am doing more than enough. Anyone who disagrees can suck it.