We Know The Things

peas

I have never identified so closely with something written by another mother as I identify with a Mother’s Day essay written last year by Ellen Seidman of LoveThatMax.com.

Entitled, “I am the person who notices we are running out of toilet paper, and I rock: A Mother’s Day tribute to moms everywhere,” this essay includes Seidman’s lists of all the practical, life-improving practical things she notices in her own home. Among things like snack food and glitter and glass-cleaner are also the things like “shoes that fit” and recent family photos and storage for the growing collection of tiny toys from birthday party giveaways. Ellen, like most mothers, also notices uncharged electronics and plugs them in, and she realizes the vegetables in the fridge need to be used before they spoil, and she remembers to procure a gift for the next graduation party her family will attend.

In short, Ellen is a parent.

For most but not all of my female friends with children, Ellen represents in her blog post the inner workings of their minds at all times. Without question, many dads I know have a similar inner monologue, and Ellen notes in her blog that her husband has his own list going. In my house, actually, my husband notices the dwindling toilet paper supply long before I do, but I’m more likely to notice the absence of roasted seaweed, clementines, and red delicious apples before he does. Still, I definitely hold more of the practical, hands-on requirements of child-rearing in my head than he does.

In response, my husband has done a remarkable job thinking ten years ahead of me. When our daughters were born, he set up college savings accounts. He remembers to fund them, too. He handles detailed paperwork like school and religious school registration, health care savings accounts, vehicle research for our current one-car-every-decade-and-a-half car purchasing plan, mortgages, and managing things like making sure the roof isn’t falling in and, if it is, selecting a good roofing company with a good reputation.

And I buy the frozen peas.

Because of this division of labor, when I am forced to consider anything further than a few months away (“does she need new sandals for this summer?”), I find myself out of shape and ill-equipped for the task. I have a talent for dealing with this very moment, and that talent has been honed more than I’d care to have honed it in operating rooms and hospital bedsides over the last dozen years. I know how to throw resources into this very moment far better than how to plan for a moment in the distance. However, as health care plans for this country show a clear path toward ruin for my children, I was forced to get out of this moment and think about what might come next.

I have one child with a kidney condition and one child whose body holds medical history in more organs than I want to mention. I stand in front of the display of lettuce at the store and suddenly find myself paralyzed by the futility of purchasing it. Someday they’ll refuse to treat her for stomach pains and she’ll die of pancreatic cancer because she was misdiagnosed with gastrointestinal disease when she was five, I think, and stare at the lettuce with tears in my eyes.

I know every moment of her history, of both of their histories. Alongside their shoe sizes and their favorite flavors of Cheezits, I can tell you the name of every medication they ever took, every heartbreaking cry of “Mommy!” in the night or in the day as they fought against an IV, every single diagnosis, correct or not. I’ve collected a medical history for each of them that crowds out the yogurt flavors sometimes, that edges past my memory of which kind of shower gel they agreed on this week. I have to take the long view now. I have to think past next weekend.

In my first essay for Scary Mommy, I dug deep into the repeal of the Affordable Care Act and how it removes protections for people with preexisting conditions. In part, I wrote:

I worry that the new health care laws will allow insurers to refuse coverage for anything related to their pre-existing conditions. For my older daughter, that could mean no coverage for anything related to her kidneys or bladder. For my younger daughter, that list could include her entire cardiovascular, digestive, and respiratory systems. In my deepest moments of worry, I picture them in doctor’s offices: my older daughter being told by a billing specialist that a urine pregnancy test won’t be covered by insurance, my younger daughter left puzzling over whether it’s worth spending the money out of pocket for a chest x-ray for pneumonia. (full article here)

For all these years, I’ve collected what felt like useful knowledge, information that could help my children. The research I did for this recent article made everything I’ve ever learned about how to raise children seem irrelevant, as though I have been raising them only to release them into a harsh world that will betray them. The comments on this Scary Mommy article on their Facebook page  include devastating misinformation and partisan name-calling, so much that I can’t help but wonder whether there was any point in my research. For every time I remember to stop at the store for laundry detergent, millions of parents all over the country are doing the same. They’re remembering the milk or the insulin, some popsicles or some extra gauze, a loaf of bread or a new prescription for asthma medication.

And all of us are in the same boat. And we’re all paddling with our backs to each other.

For Mother’s Day, all I want is a guarantee of decent health care for my children and for yours.

 

 

This has been a Finish the Sentence Friday post. This week our sentence prompt, in honor of Mother’s Day in the US, is “Oh, Mother…” This week is hosted by Kristi of Finding Ninee and Lisa from The Meaning of Me.

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10 thoughts on “We Know The Things

  1. Times are very uncertain at the moment. I hope everything works out x

  2. I worry too. About so much. I worry about my son getting what he needs and I worry about my husband and myself as well. We’re on the old side for having a seven-year-old so who knows what issues we may face in the coming years. For now, my husband has good insurance but again – the uncertainty is maddening. Congratulations on your SM article – it’s a great one. I’m sorry about the comments.

  3. As a Canadian, my heart goes out to you. I can’t imagine the problems you are facing and I wish I could do something to help.

  4. As a Canadian as well, I second that helpless worry for your children and many more.

    I have kidney disease and other conditions and they started in childhood. I can’t imagine how my own parents would have dealt with not being able to pay for my medical needs then. I am so angry at what your government is doing. I am writing something about this, from my Canadian perspective, as a patient too actually. I will be sure to read your SM article. I am sorry about the comments. It’s recommended never to read those, not even a glance, but that’s easier said than done I understand.

    Happy Mother’s Day to you. Your children are lucky to have you.

  5. I am from Europe and I can’t begin to imagine what you are going through. What society accepts that the sick are not trated? What pushes so many Americans to believe that the individual alone can beat all odds? I feel for you and I wish your family all the best.

  6. The ACA and all its current issues and potential future changes are such a huge concern right now for so many people, for so many reasons. I worry and pray so hard about this one.
    I do love what you refer to here – the constant inner dialogue parents have. The things to know, things to remember, things to keep track of and do are all such a challenging and yet wonderful part of having children.
    Happy Mother’s Day to you!

  7. To all of you from Europe and Canada writing with your concern, thank you. All we ever hear from politicians here is how terrible socialized medicine is other countries, but when I talk to people like you, I hear none of that criticism. Even the people who wrote after the Scary Mommy article who mentioned waiting for specialist appointments don’t sound like they had harder, longer waits than we did for specialists. Emergencies sound like they’re handled well. It would be wonderful to talk more with some of you about your experiences. Kerry, would you be up for an interview?

    • I’m happy you asked about this. I am so unbelievably concerned about the repeal of the ACA–and am actively fighting against it with all the tools I have…. However, as an American who has lived in Canada and is married to a Canadian, as the mom of an extremely medically-fragile child who has received much of her treatment in the US, but has had one emergent hospital stay in Canada, as the daughter-in-law of a Canadian who has been waiting for 2 months (and likely another 2) for open heart surgery, I think the Canadian system also leaves a lot to be desired. I think this is especially true for care for children with complex medical conditions. Waits for basic services like speech therapy can take years. I have a friend who had to wait 18 months for a wheelchair for her severely disabled child. And another friend who was told to put her three year old on the wait list for a group home since the time to getting a spot outside Toronto can be 30+ years. My daughter is Canadian, so if things get bad in our state, we do have the option to leave…but also–we haven’t left yet, with very good reason: I still believe, all things considered (e.g. we live in a state with a good Medicaid waiver and we have very good private insurance) my daughter gets far better care here. That may change…but, just something to consider as we discuss the kinds of solutions that may or may not work in this country. (Sorry, I just wrote a small book on your blog, LOL!)

  8. Yes.
    I have nothing to add.

  9. I worry about this as well, so much. I will be meeting with our congressman on Tuesday–he voted for the repeal. I find it so difficult…and we will will get through it, together. Xo

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