My Medically Involved Daughter Is Not Trampling Your Pursuit of Happiness

“Two things that happened in 2012. We had two AOL-ers that had distressed babies that were born that we paid a million dollars each to make sure those babies were OK in general. And those are the things that add up into our benefits cost. So when we had the final decision about what benefits to cut because of the increased healthcare costs, we made the decision, and I made the decision, to basically change the 401(k) plan.”

Tim Armstrong, CEO of AOL

The actions of AOL under the leadership of Tim Armstrong are extremely disappointing and epitomize not only the current state of corporate greed but also that of the wealthiest 1%.  Mr. Armstrong makes $12,000,000 annually; however, he cited the $2,000,000 of medical expenses incurred by two newborn babies as the strain on AOL’s resources necessitating changes to employee benefits rather that his own compensation.

Deanna Fei, the mother of one of the “distressed babies” wrote a blog in response to Mr. Armstrong’s comments during which she eloquently spoke to the harm of  Mr. Armstrong’s greed ridden comments, “Our daughter has already overcome more setbacks than most of us have endured in the span of our lives. Having her very existence used as a scapegoat for cutting corporate benefits was one indignity too many.”

I cannot agree more with Ms. Fea’s comments that express her frustration and dismay that Mr. Armstrong felt it appropriate to not only lay blame for changing AOL benefits on the Fea’s newborn born daughter but also the insinuation that it was the Fea family who was greedy rather than Mr. Armstrong:

“Let’s set aside the fact that Armstrong—who took home $12 million in pay in 2012—felt the need to announce a cut in employee benefits on the very day that he touted the best quarterly earnings in years. For me and my husband—who have been genuinely grateful for AOL’s benefits, which are actually quite generous—the hardest thing to bear has been the whiff of judgment in Armstrong's statement, as if we selfishly gobbled up an obscenely large slice of the collective health care pie.”

Deanna Fea

[caption id="attachment_1212" align="alignleft" width="239"] Caroline, my distressed baby, shortly after being released from the hospital.[/caption]

The physical, emotional, and financial toll of giving birth to a “distressed baby” is great.  Our lives were forever changed by Caroline’s entry into the world.  The medical bills, lack of sleep, and endless medical appointments were overwhelming. We had to figure out how to close the substantial gap between insurance and the medically necessary care that Caroline required. I cannot begin to imagine what it would feel like if the medical care Caroline received was cited as a reason my employer chose to change our benefits package. Especially since one of the benefits of employer-sponsored healthcare is that there are lower premiums when all employees (not just the sickest employees) secure benefits…meaning that by creating a large pool of insured the risk is shared among many so when the unexpected happens—giving birth to a “distressed baby”—the burden of the cost is shared.

I also find it interesting that employer-sponsored health insurance was offered as a way to entice potential employees when the federal government instituted wage controls during World War II.  Essentially, fringe benefits like sick days, health insurance, and the like were not considered compensation so they were in affect a loophole that allowed employers to skirt wage controls. Fast forward to today as healthcare premiums are rising quickly many employers are doing everything they can to reduce healthcare benefits. Both commonsense and research dictate that access to healthcare insurance leads to less time off of work just as increased access to sick and vacation time increases employee productivity and engagement. But for some reason, most employers are not willing to learn from the examples of the few responsible employers who have managed to be very profitable yet provide employees with access to benefits that increase productivity, loyalty, and employee satisfaction—Google, SAS (Statistical Analysis Systems), and the Boston Consulting Group  to name a few.

To be fair, AOL and Mr. Armstrong are not the only examples of corporate greed trampling not only the livelihood but potentially the lives of the medically fragile members of the workforce (and their family members)—who are the backbone of industry and progress in America—they are simply the most recent example.  It is my hope that as a collective we will demand that corporate America treat those who keep America running with the respect and dignity we so rightfully deserve and in doing so allow the American workforce the ability to pursue their happiness or version of the American dream.

And to Ms. Fea thank you for speaking up and sharing your story.

Cue the Violins

I took today off of work, I was hoping to get caught up on scheduling a lot of Caroline's appointments. Instead I felt guilty about falling behind at work and spent the day fighting with Cigna.  I am MAD, fighting mad--life is not supposed to be this hard.  I try very hard to be helpful to people in every aspect of my life but I feel like that kindness is rarely returned. I know cue the violins---I am totally feeling sorry for myself.

Today, I got a call back from the office of a speech therapist who I would like to work with Caroline.  She explained how my benefits would work for both in network and out of network coverage. It boils down to in network--I pay $0 for up to 100 visits, out of network, I have to pay 40% of each visit which comes out a little over $1,100 a month--this is only for speech therapy.  I called Cigna to find out if there were any in network providers in my area. Turns out there are none, one is listed but it is a wrong number.  So the customer service representative explained to me that I could apply for a network exemption because there are no speech therapists contracted with Cigna in a 40 mile radius--great.  So I call the therapist back and get the necessary information. I call Cigna back, explain to the customer service rep what I am trying to do, she says no problem and transfers me to pre-authorization.  Well, the woman in pre-authorization explains to me that network exemptions are only allowed for specialists, speech therapy is considered an ancillary service.  She actually said, "I don't want to sound rude but you could drive over 40 miles or use your out of network benefit. You know people with an HMO don't have the option of going out of network."

Wow! Just wow! I did not know it was possible to literally blow my top---if I could reached through the phone... Instead I inhaled and loudly asked,  "Do you know how much I pay a month in premiums, much, much more than someone with an HMO. Also if you look at my record you will see that I met my out of pocket max some time ago so you can surmise the cost of my annual medical bills. And the very fact that you would suggest I could drive 40+ miles, one way, at least twice a week, when my daughter needs to receive three forms of therapy on a weekly basis and is currently followed by 10+ specialists shows how callous you and Cigna are. I wonder how do you sleep at night knowing that you work for a company that crafts policies to limit payment of medically necessary services to medically involved children with disabilities because you know their parents don't have the time to fight the system...no really how do you sleep at night?"

She did not take kindly to my question and just kept asking if there was anything else she could do to help me. I made a few suggestions including sending a donation to help pay for my daughter's medically necessary speech therapy.  She did not ask for my current address so I am not really holding my breath for her donation.

I am also gearing up for the second installment of Caroline's IEP meeting.  We have several appointments scheduled with specialists to address a myriad of issues ranging from possible asthma to ruling out vision issues.  There are not enough hours in the day to coordinate Caroline's care, work full-time, and be a wife and mother.   My hair is falling out and for the first time in my life I have high blood pressure. Having said that, I have to say that despite the stress for the first time in a long time, I am happy. Thank you, Lexapro. I am realist--I know when I need the help of chemistry to get by.  I am trying so hard to find balance and to roll with the punches but my body knows how stressed I am, despite my efforts to convince it otherwise.

So today, I am feeling sorry for myself--because I have to spend so much time fighting for the care Caroline so desperately needs--time that I would much rather spend with her, because the money I work so hard for cannot go for a down payment on house but rather will be spent on therapies that insurance should pay for, because I am always so tired, because I don't have time for real therapy so I over-share via my blog, and because I am mentally, physically, and emotionally exhausted.  Tomorrow, I will put the violins away and rally.

How do you keep going? Where do you find the strength to keep fighting?

--written as I pack for a business trip to Georgia.

Mommy Guilt

I am not the type of person who cannot , not work outside the home--I tried once, I ended up being named Communications Director of the network of charter schools where my husband was employed. Work is my zen place. At work, I have the opportunity to create beautiful opportunities for individuals to engage with meaningful information that impacts lives.   I am challenged on a daily basis in a way that helps me grow as a person. And while I take my career very seriously at the end of the day it is a job. The moment I realized it is just job, is the moment it became an opportunity to make meaningful decisions that did not have life or death consequences attached.

I think I am good mom-not a great a mom. I am concerned, involved, and mostly available.  The mostly available part is somewhat ironic as when the topic of having children was discussed with my husband (before marriage) he said, "They never go away, they are always there, it worries me." I tried to calm his fears by explaining that is why there are two of us.  I will admit more often than not, in recent months, I am the one more likely to sneak moments to myself or little breaks.

When I started working in my current position, I started working crazy hours. I liked what I did and the company culture was intense. It took me awhile to realize that I was frequently the last to leave in the evening and that I was working at home almost every night. When I finally asked myself why I was working like this---I realized the answer was complicated.

• I wanted to be viewed as a professional not as a working mom or as a working mom of a special needs child. This was hard to pull off because I talked about my kids at work but I thought that I could talk about my kids because I was getting so much accomplished.


• I also felt like if I worked hard enough I would finally get compensated in a manner that would allow to adequately provide for my family, especially Caroline.


• And finally, I felt like work was an environment that was easier to control than my personal life--I needed a place where I could feel successful.

I will be honest at first business travel was a welcomed break from the responsibilities of being at home and an opportunity to be fully engaged with work well into the evening hours. However, now as the travel is weekly, I find myself seeking out creative ways to stay engaged with the daily activities of John and the ladies'.  We Facetime, as much as possible, exchange pictures (in the vein of where in the world is Mommy), and plan for quality time when I get home.  I also still coordinate all of Caroline's care from wherever I am, so if a therapist needs to reschedule I handle it-so John doesn't have to try and figure out the whole schedule when I am gone.

I am a mom and just like most every mom I know, I suffer from the dreaded "mommy guilt". Travel isn't the only reason for "mommy guilt" there is also missed activities, not spending enough one on one time with each of the ladies,  my short temper (especially when there is whining involved), frequently forgetting Friday is Show and Tell Day,  and my lack of  interest in watching "Jake and the Neverland Pirates." But at the end of the day after I repress all that guilt, I think that it is important for my daughters to see their mom as a professional, who has commitments beyond them.  I am happier when I am fully engaged and being challenged professionally, which makes me a better mom and wife. My career forces me to disengage from Caroline's care for bits of time, it offers a mental break from many stressors. This is not to say my career is stress free but professional stress is so different.

My family supports my career because it is important to me. Just as I supported John's career by moving to Texas, and as we support Vivian by providing her opportunities to engage in activities (swimming, dancing, piano), and for Caroline when she expresses an interest (such as going outside) we drop everything to make it happen because she so rarely makes a request.  The headline being, as a family we support each other's priorities.  Self interest rightly understood, when the members of our family are happy it is easier for us to be happy :).

If you are a traveling parent how do you find balance? How do you deal with parental guilt?

--written from Atlanta, GA.