This week for Finish the Sentence Friday, I was tasked with writing about 10 things most people don’t know about me. Since I have made it a habit to write about my life on the internet, there isn’t a whole lot about me that I want people to know that I haven’t already written about… I could, of course, write about that hidden tattoo or the embarrassing things I’ve done that still wake me up at night or share that post I wrote (and never published) about what makes special needs moms so darn sexy.

But I’m not going to do that.

Instead, I am going to write about a few things I do all day…These are things that seem like secrets—not because they should be, but because it often feels like they are invisible to most people.

Yes, in many ways, there is more awareness than ever of parents like me—we can be a bit loud when it comes to protecting our children’s healthcare or the accessible bathroom. We totally tell stories on social media about those pitying statements of “I don’t know how you do it” and other awkward interactions. And it is possible that we might start fights with parents who complain about their kids’ immunizations on Facebook. And we have been known throw down with a doctor in the hospital and then blog about it later…I mean, for example…that could happen. Sometime.

But, often, I think what remains unclear to people are the daily minutia of dealing with chronic life-threatening medical challenges. These details are essential pieces of building up and maintaining the well-being, health, and safety of individuals like my daughter. However, they just don’t click as well as stories about twitter trolls, mama bear tongue lashings in school parking lots, or inspirational inchstones.

At the same time, these minutiae are what are the real answers behind the question that, frankly, I ask myself all the time when it is suddenly 7pm and I seem to have accomplished zero things: What do you do with yourself all day?

1. I take my time

A lot of what I do all day is familiar daily parenting stuff that just takes a thousand times longer. Consider school drop off. I can’t stop and idle, waving while my child escorts herself into the building. I park—in one of the accessible spots, occasionally after having to shoo an eye-rolling “ugh, I mean, I’m just waiting here” mom out of it—unload, pausing to push a quick 60ml of food through the feeding tube, and walk her in. Then I spend no less than ten minutes in the classroom, filling them in on her night, reading the temperature of the room, talking to her classmates, and looking over her schedule for the day.

2. But, also? I never stop moving

Just like that quick top-off of food I give Esmé in the school parking lot, my day is run on clean 15 minute increments. Once I drop Ez off, I have about two hours before I have to head back for her. This is a well-oiled routine. I talk to my mom, typically, for a few minutes, order my coffee, catch up on foundation stuff, write, then gym. Then it’s time for pick up. Notice I don’t mention a shower…because it doesn’t fit in the allotted time. So, I pick up my kid gym-stinky. If you think that’s gross—I do too. But, hey, I’m trying to live forever over here.

3. I lift

Obviously, I’m lifting Esmé all day. I lift the heavy bags of stuff she travels with. I also lift her chair. In and out of the back of the van, up over steps and curbs with her in it. This is my secret for the butter-churning Hulk-shirt busting powerhouse arms I sport.

4. I nap so hard

By which I mean, at the prescribed time of day, I lay very still and try not to breathe funny whilst my daughter uses me as a human beanbag for the four-hour naps that have taken hold since she got sick in January. If I’m very good she might allow me to sip tea and text or binge watch Younger…so long as I don’t think very hard or do anything time-sensitive or have the audacity to drift off myself. And before anyone says anything about spoiling her with letting her nap on me…I invite you over to help during the thing that happens if she’s left alone to nap. Spoiler alert: it ends with her blue and possibly seizing.

5. I make phone calls

The list of phone calls I need to make is astonishing. Second only in shock factor to the wait times in order to speak to someone at the insurance company, the DME, the eternal nutrition supplier. I have spent years of my life on hold and being hot potatoed from one department to another (only to be “accidently” disconnected). Of course there is an upside to this call frequency. At my daughter’s neurologists office, where I have to call every two weeks for a prescription refill, they know my daughter’s date of birth and my call back number by heart. Or the pediatrician’s office, I get a call back in under 15 minutes, without fail.

6. I rant advocate

Oh, my goodness. Do I ever rant…But here’s the thing, I know the Medicaid/healthcare/insurance systems inside and out. I have been stuck in that unspeakable insurance agony—the one where you find yourself the middleman in a nonsense storm—so many times that I cannot help but say the angry words. Like recently when I figured out that a certain enteral supply company (Hi, CVS/Coram!) was happily upcharging their clients 300% for a particular vitamin supplement via a “private pay program.”  I rant for stress release, certainly, but also because I can’t help but hope to make it easier for the next person who enters whatever ring of purgatory I have found myself in.

7. I listen

New parents of fragile children, expectant friends, parents of typically-developing children with health/behavioral hiccups call. I talk with caregivers with g-tube troubles and friends heading into IEPs. I hear from friends of friends overwhelmed with diagnoses or lack thereof, and from parents contemplating end-of-life decisions for their children. And I struggle to find helpful words…to advise, to try to somehow pass some kindness, clarity, or peace along–as so many other mothers have done for me. And, so often, I feel like I fail.

8. And I bite my tongue

Much as it doesn’t seem like it. I do. There’s a ridge forming on that tongue as proof that there is a lot more I’d like to say. But that’s all I will say about that.

9. I forget I am a Mommy

In any given day I do so much for Esmé, in service of her, in honor of her, that there are times I feel like I have to remember that I am not her case worker, her secretary, her nurse, her therapist, her doctor, her teacher, her insurance adjuster. I watch other loved ones interact with her without the weight of all of that—and I sometimes feel jealous of the ease. Sometimes I have to remind myself that I’m a Mommy…and that it is my job to keep my daughter safe and healthy, yes, but also it is my job to just be with her. I forget that she needs that—and that I do too.

10. I cry

Like a lot. In fact, I may have a tear-stained face at the moment, as I am writing this. I spend so much time feeling as though I am about to go under the water…and unable to see anything but water in every direction…that sometimes that’s all I can think to do.

These are the things you didn’t know I did all day.

 

This has been a Finish the Sentence Friday post. I love participating in Finish the Sentence Friday (FTSF) with Finding Ninee and Sporadically YoursEach week on FTSF we receive a sentence to finish. 

Join the Facebook Group to start linking up with all of us! You never know what will happen… The first week I linked up I wrote something that I didn’t even know I needed to write. It felt so raw and close to the bone that I wasn’t certain I wanted to share it. But I did it anyway…and I am so happy I did. 

 

12 Comments

  • I also rant a lot, I mean advocate! We have to or nobody does anything to support or help our kids and us. As for number 10, keep swimming! Don’t let the pull take you under. I feel the same most days and it’s suffocating. Huge hugs 🙂 xxx

    • Ranting Advocating is the best 🙂 Thanks. I will keep swimming, but it can get so exhausting. I am always relieved to know I am not the only one. XOX

  • Wow! That is an all consuming day. I’d be overwhelmed with the phone calls alone. I think mother’s are super humans and regardless of what we are made up of we can get it done no matter what. Shed your tears when you need to but you’re a super mom, you’re not going to go under. (((hugs)))

  • You do so much each day. I’m impressed you make sure to take time at the gym. The insurance stuff is so frustrating and overwhelming for me and I don’t have anywhere close to the claims/supplements/medications that you do. I hope all the people who say things like “I don’t know how you do it” read this. Moms just do what they need to! xo

    • Most moms absolutely do what they need to do. It is just what we do…up to and including ranting at insurance agents, LOL. XO

  • People who haven’t had to advocate for someone, really have no idea of how difficult and stressful that can be.
    All the phone calls and paper work that sometimes can seem unending can wear a person down.
    Being able to get to the gym and maybe socialize just a bit there must feel so good.
    Hugs for all you are trying to do.

    • Thanks Pat. It can absolutely wear a person down…and sometimes I feel like that is precisely what it is intended to do…so we all just give up. But give up isn’t in my blood 🙂

  • Wow – I’m exhausted just reading this! I know how time consuming it is to be a mom, yet seemingly have nothing to show for it at the end of the day. I know it’s even more so for a mom caring and advocating for a child with special needs. I know you’re just doing what you need to do, but that doesn’t mean it’s easy.

  • What a day.

    I am the one starting to do more advocating, for myself and my brother and others with disabilities. It is exhausting and yet I am not a mother. What you and all mothers do is a beautiful, difficult, necessary, challenging, gift of a thing.

    Advocacy really isn’t as rewarding, on a daily basis, as people might think. It’s got to be the small details, one step at a time, set up against seeing the benefits over a longer period of time.

    Still, breaking down your day like this and sharing it is a good way to help people understand what it is like. Thank you for that.

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