To-do list this week:

• Follow up with insurance company re: diapers appeal
• Follow up with DME supplier re: feed deliveries
• Follow up with hospital re: negotiation of large hospital bill
• Try for a 3rd time to get info from disability charity about completing portions of the Medicaid waiver application which I don’t understand
• Take Grace to dentist for post-op follow up
• Get Grace off to school every morning by 7:30
• Work 7 shifts at the restaurant
• Keep Jack on task with his online school work
• Pick Elijah up at school (40 mins away) every day I’m not working. Arrange help the days I AM working.
• Pick Elijah up early for orthodontist appointment
• Clean Grace’s bed twice (or else the house will smell like a public toilet)
• Keep working on website I’ve been contracted to build
• Make sure someone’s here to collect Grace’s deliveries so porch pirates don’t steal them
• Return calls for the many voicemails I get from Grace’s people when I’m too busy or tired to answer the phone
• Manually pay the water bill (because our town lives in the dark ages)
• Bathe Grace twice (dad does weekend bath, I do mid-week)

Somewhere in there, I squeeze in light cleaning (hubby and teenagers do a lot on the weekends when I’m working), cooking (again…hubby and mother help with this the nights I’m working), sleeping (which I somehow manage to do a lot of, considering) and just general “me time” (bathing, shaving, painting my nails, talking to friends, drinking coffee on my green sofa).

And I beg you to tell me…which of these things am I supposed to just not do when someone sighs, “oh honey you’re just toooooo busy”. Because this is something I hear at least once a week if not more.

And yes…I AM busy! I have 3 kids. Two are teenagers. One has special needs. One goes to a magnet school far away. The other is homeschooled because his school wouldn’t get on board with his ADHD and he is on waiting lists for every charter, Montessori and magnet program in the area. I have a house. A job. A relationship. This is just NORMAL BUSY with the addition of special needs stuff.

When you tell me I’m “too busy”, I feel shame for trying to keep it all together.

Like perhaps it would be better for you if I appeared to be falling apart so you felt better about the way you might be falling apart in your normal life which doesn’t include a chronically ill child. It’s funny to me how people with one completely well child (or no children at all) tell me how stressed and tired and incapable of keeping up with life they are. Just because you can’t handle run-of-the-mill adulting doesn’t mean special needs parents are “doing too much”.

I can’t remember ever ONCE being told I’m “too busy” by fellow special parents. Because my tribe knows these things are non negotiable. I’m not busy. I’m surviving. I’m parenting a kid with a life-long and chronic illness and some weeks, that means just trying to help her not to die from bugs that would just make a typical kid sneeze a couple times.

No…this “you’re tooo busy” advice has been delivered to me exclusively by people who perhaps cannot possibly comprehend how literally impossible it would be for me to do less than I’m doing right now. By people who don’t see me not showering for 2 days precisely BECAUSE I’m in hibernation mode. Or see me in bed with Netflix all day while Jack does school alone. Or know that I quit my career to serve at a restaurant because it’s more money in a shorter period and it gets me out of the house.

I extend the benefit of the doubt to these people because they may not understand that if I don’t spend hours negotiating, arranging and administrating Grace’s care, she will either die of starvation or be taken away by social services. Someone has to bathe her. Feed her. Go to CVS constantly to pick up meds. Work to pay for all that stuff. And that someone is me.

Note: I also have my own autoimmune disease to manage and afford (meds, blood tests, endocrinology appointments) and Jack’s ADHD which is a constant struggle and expense (of course the medication that worked for him was the expensive one!)

“You’re too busy” is in the same category as “let me know if I can do anything”.

It’s a passive attempt at saying something (anything) to not feel like an asshole without actually offering help. And you’re not alone because I have to actively fight saying these things to people, too. Because I also feel like an asshole when people are suffering and I can’t/don’t help. If I don’t have it in me to help, I choose to say nothing at all. Or at the very least, “friend, that sounds really hard.”

Instead of “you’re too busy”, maybe try “what day can I get the kids at school for you?” Instead of “let me know if I can do anything” try “what night can I bring dinner?” Or you can just say absolutely nothing at all. Just because my kid is sick doesn’t mean others are required to pitch in with my responsibilities. This is just my personal adulting experience. It’s just a bit more intense than others. And SOME people have it way harder than me (hello, families with more than one disabled kid!) Honestly…you don’t have to say anything to me if you don’t have time to get involved in our own endless hell.

Consider this…if “you’re too busy” is just you projecting onto me your own feelings about your inability to cope with life, I encourage you to explore those emotions.

But I swear to God…the next person who tells me I’m too busy will be added to a babysitting/school run schedule.