Parenting a Chronically Ill Child {While Holding Down Your Day Job}

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By Law Momma Contributor

My two year old son has reactive airway disease.  This is pretty much an avoidance diagnosis… basically, it’s asthma that he might outgrow so they don’t want to call it asthma because of insurance reasons. (Apparently, once diagnosed with asthma, the diagnosis sticks with you for life for insurance purposes, even if you have no symptoms and haven’t had an attack in almost 30 years… not that I know anything about that.)

For the sake of my life, what the Reactive Airways Disease diagnosis means is that I am a working parent of a chronically ill toddler.  And that is something I wouldn’t wish on my worst enemy.

As working parents, we have certain responsibilities to our employers, silly things like “consistency in attendance” and “presence in the office.” We have billable hours, or sales quotas, or client contact goals.

In short, we’ve got shit to do, yo.

So when you find yourself in the unfortunate position of having a chronically ill child, there are sacrifices that have to be made both in the office AND at home.  And it stinks.

J was diagnosed with RAD when he was around four months old.  As far as chronic illnesses go, this is the one you want to have.  RAD isn’t exactly fatal… it’s just… terrifying.  Watching your child struggle to breathe is one of the hardest things I’ve ever had to do, but I want to be clear that what I go through with J’s RAD is nothing like what a parent who has a child with a more serious condition might go through.  Some of the challenges as far as working outside the home, however, are probably quite similar.

I have been very fortunate in that I have yet to work a job that made it difficult for me to bring my child to the office.  When J was a baby, I would leave the Pack ‘n Play in my office just to save from carrying it everywhere with me.  And if this is something you can do with your jobs, then by all means do it… but just because my bosses let me bring my kid, didn’t mean I could actually DO anything with my child there.  Especially not as he got older.   On top of just not being able to focus, I had a billable hour requirement.  I traveled a lot for work and I really needed my time in the office to be MY time in the office.

When I realized in April of 2010 that my marriage was ending, I was faced with a myriad of difficult decisions.   I knew that I would be the primary custodian of J, it only made sense.  But I was working a job that required me to travel two out of five days a week and pull in 2200 billable hours for the year.  There were at least five times a month that I would be gone until 7 or 8 at night or have to leave at 5 or 6 in the morning and daycare was only open from 7am to 6pm.

In short?

I could not do my job as a single mother to a chronically ill son.

Let’s face it, it’s difficult to hold down a steady job when you’re missing time from work.  It’s hard to show your boss you are a serious professional when you are constantly being called away by daycare phone calls or early morning fevers.  It’s hard to get ahead as a professional anything when you have to put your child first… before clients, before conference calls, before sales pitches, and even before attendance policies.

Ultimately, the best solution for me was to take a different job, one that didn’t require as much travel and one that didn’t come with a billable hour.  I was up front with my new boss about the time I would have to spend “parenting” at least until I could find someone who was available at the drop of a hat for sick day babysitting.  (It’s tough without family nearby!)  And yes, there are days when I have to send my child to daycare when I know I should keep him home.  There are days when he cries and begs to stay home and I have to stick out my chin, and grin, and promise him that the sun will come out tomorrow or something like that.  So far, my new job is a good fit for J and I because it gives me a bit more flexibility to care for him as needed.  But don’t get me wrong, flexibility comes with a price.

I’m not first in line for a promotion.

I’m not first in line for great assignments or fancy dinners with the boss.

I’m not first in line for anything other than drop off at daycare in the mornings.

Having a child who suffers from a chronic illness means having to decide: Career or Carer. Working to make it or Making it work.

I choose Making it work.

If we’re being honest, I don’t like that I had to make the choice.    I don’t like that I can’t be the lawyer I thought I wanted to be and be the mother I know I need to be all at the same time.  I don’t like that I have to make decisions every day between my job and my child… it’s hard.  Someone always gets left out.  Someone always gets let down.  And 9 times out of 10, I have to choose my child… at the expense of the promotion and the fancy dinner and the raise.

But as a mother to a child who basically deserves his own parking spot at the pediatrician’s office?

I think I make the only real choice I have.


  • Shannon says:

    Love this line: promise him that the sun will come out tomorrow or something like that. That totally sums up our jobs as working moms <3
    Shannon recently posted..Wordless Wednesday: Window WatchingMy Profile

    • Law Momma says:

      It’s so hard. I wish I could magically manage to do both with a gold star standard of exellence!! But, honestly… these days, I’ll settle for a pat on the back followed by “That didn’t suck as bad as last time.”
      Law Momma recently posted..Liberated!My Profile

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  • Susan says:

    2200 billable? That would be hard for anyone to do, especially a single mom.  I recently left a firm job, too, for one without billable hour requirements and it has made me so much more sane… 
    Susan recently posted..Coast to Coast CoutureMy Profile
    Twitter: glossingoverit

  • Mary Beth says:

    Our daughter had basically the same diagnosis. I was so lucky to work at a very family-friendly health department, and my boss was a mom whose daughter had the same issues as a baby. It consumed the first two years of her life, basically. She knew the word ‘nebulizer’ before she knew her ABCs. It’s tough. Very nice post – thank you.
    Mary Beth recently posted..Working With Style: Wrapped in RedMy Profile
    Twitter: bloombing

    • Law Momma says:

      Oh the nebulizer. You know they have cute penguin ones now? We’re stuck with the sad gray box but some of J’s friends have adorable ones.

  • Krista says:

    Oh man…. as the mother who is working from home yesterday and today because of a sick kid, after being on vacation for a week AND is working for a brand new boss, i get this. I love that my boss is understanding but I hate that my coworker is going to the sales meeting in Dallas next week and I wasn’t even asked. I appreciate that she takes my family into consideration, but I hate it too. I guess I just want to be able to do and have it all and the fact that I can’t is a big ‘ol grown up pill I have to swallow. I guess.
    Krista recently posted..The next time they’re fighting, I’ll remember this momentMy Profile
    Twitter: notmommyofyear

    • Law Momma says:

      I hate the grown up pills.

      I just want to be carefree and “la la la this is what I choose to do” without anyone giving me the stink eye!!! But, you know what… it’s worth it. I think. So I hear, anyway. :)

  • H says:

    When I as full-time, I worked crazy hours. I even earned a prestigious company-paid vacation. But… the vacation was scheduled 2 weeks after my due date for my daughter.  I wasn’t offered anything to compensate, nor was I even given a plaque. To this date, I have nothing but an e-mail saying I won this award. 

    I’m lucky enough to be able to work part time at the same job, and it’s just like you said: I can’t be the project manager, the lead, or anything that requires the full-time attention. And I’m mostly okay with that — in fact it’s kind of nice to not be the one with all the pressure on my shoulders.  But it still sucks sometimes, knowing that you aren’t meeting your max capabilities. Despite doing a kick-ass job above and beyond my job requirements as a part-time employee, I’m still not getting anything but VERBAL recognition. I think when push comes to shove, my employers know that *I* know how lucky I am.  They have zero incentive to reward me.

    But I have a beautiful, thriving, happy 2YO reward at home, and sometimes it sucks to see all the photos from the people who have won that vacation year after year since I missed out,  I know I made the right decision for me & my family.

    Stay strong!

    • Law Momma says:

      Guess it boils down to what we label as a success… the big pricey vacation and company car, or the big priceless smile of a well-loved child. I chose the smile, and even though I sometimes long for the vacation, I secretly wouldn’t trade the smile for the world.

  • no name says:

    As usual law momma, this post hits home for me. As the working mother to a child with a very rare genetic auto immune disease, I am grateful for my manager and his boss as well for their support when it comes to my son and his health.

  • Rachael says:

    OMG, this is so my life only my daughter has scoliosis and a condition called neurofibromatosis or NF1 for short. I’m also a single parent without my own mum nearby to help I am finding it increasingly difficult to hold down my job. I work full time and am now coming to the conclusion that I need to work part time and I will never be the teacher I thought I would be. But my daughter comes first.
    Rachael recently posted..Atelectasis…My Profile

  • Erica says:

    I found this after post after Google searching, “looking for a job with child with chronic illness”. I have a question. I have a 2 year old with a chronic blood disorder. My last job was amazing, but it relocated. I freelanced for awhile, but we really need the double coverage in insurance for him. I’m back in the job search world, so now I’m wondering when do I bring this up? At the interviews? When I get hired? I hate leaving that bit out while selling myself at interviews.

    • Law Momma says:

      There are several schools of thought on this… I tend to operate out of the George Costanza School of Thought: Tell ‘em all the bad stuff right up front and see if they still hire you. I’ve found that I feel better about the places I work when I know they know EVERYTHING about me and still want to take a chance, because at the end of the day, I’m not going to be happy working somewhere with a boss who gives me the stink eye every time my child needs me more than my office.

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