I Am a Single Parent

As of 4:30 AM, last Tuesday, I am a single parent.  No, John did not tire of my antics rather he accepted a job that requires him to work/live in Houston (3.5 hours from our home) during the week for a few months.  I have learned some valuable lessons during my time as a single parent.

[caption id="" align="alignright" width="390"] Kristen and Caroline soaking up some sun. Photo Credit: Kristen[/caption]

First, I am extremely lucky to have the help of our nanny-extraordinaire, Kristen, who did not bat an eye when we told her of the new living arrangement and also that there, would be times when we would need overnight help.  Kristen loves our ladies like they are her own and she understands how to meet them where they are—which is so important.  Kristen also coordinates the ladies’ schedules during the day which is no small task—if Caroline has a doctor’s appointment that may mean rescheduling up to 4 standing appointments.  I am not sure our family would “work” without Kristen. 

Second, I learned that I am extremely lucky to have met such wonderful people in San Antonio.  When I told our friends about our new living arrangement they very eagerly offered assistance.  In San Antonio I not only feel like I am part of the community but that there is community around me.     

And finally, I realized that not everything is going to get done—even with the help of Kristen and friends.  There just are not enough hours in the day.  Thus I have decided to grant myself dispensation.  If the house is messy so be it. Caroline might not get as much structured time with me but she will be safe. Vivian is willing to step and do her share by watching more television. And I will not be logging back in to work every night, after I put the ladies to bed.  I hope that during this time as a single parent I will be able to spend more quality time with the ladies by allowing myself not to worry (read: obsess) about the mundane.

In our seemingly endless quest for stability and security we, the Buzzard family, find ourselves once again, living on the edge.  John and I have decided that the time has come for us, as a family, to put down some roots.  And although, we have to move from our current house by the end of April—we have decided that our move will be a small one within the confines of San Antonio.  We have fabulous friends, Caroline has wonderful therapists, Vivian loves cowboy boots and we are thriving here as a family. I feel very confident about our future. So although, I will be playing the part of a single parent for the near term I am excited about our future in San Antonio, a city on the rise.  

She Is Not Deaf

My daughter is joyful, jovial, sweet and crazy smart.  She is also a nonverbal sensory seeker who flaps her arms and screams uncontrollably when she becomes excited or frustrated.  Caroline is autistic; she is not deaf and she is not without feelings.

 I am Caroline's mother, caretaker and biggest advocate.  I am not deaf and I am not without feelings.

On more than one occasion a seemingly typical but curious adult has asked—within hearing distance of Caroline—What is wrong with her.  My visceral response: "Nothing is wrong with her but I question your upbringing and manners.  And to be clear when I say nothing is wrong with Caroline, I meant there was nothing wrong with her before she heard a total stranger ask: What is wrong with her."

Different, not less. 

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.

Missing Brit: 6 Years

[caption id="" align="alignleft" width="223"] Brit snuggled with her baby blanket. This picture was taken the summer before she passed away, when she came to visit me in Northern Virginia as part of the celebration of her 9th birthday.[/caption]

It has been six years since that painful night when I held Brit’s hand as she left this world.  When I remember that night, I think about how her baby blanket was nestled close to her face as it was almost every time she slept. That image of Brit—with her baby blanket on her death bed—is an image that both comforts and haunts me. It is always unsettling to lose someone you love but particularly so when she slept with baby blanket.

For those who want to know more about Brit's medical battle, see here.

The flashbacks from that night are vivid and real, I can almost touch them. I remember the moment; I realized I would never speak to Brit again. I was standing in her PICU room, after she just had just been connected to ECMO, think heart and lung machine.  One of the nurses looked very concerned.  I asked her what was wrong.  She explained that even though she was pushing fluids, Brit’s blood pressure was not increasing.  At that moment, I knew.  I knew everything, I feared since I got the phone call from my mom telling me that Brit had an infection in her brain that required immediate surgery was about to come true.  I was overcome with waves of emotion that included immense sadness, sorrow, and relief. Yes, relief. It was excruciating to watch Brit experience so much pain and being so scared—so I felt relief, relief that Brit was at peace and would no longer have to endure the torture of inconclusive medical tests and medical procedures that in the end proved to be ineffective.

Over the years, the images have changed.  I am thankful the image of Brit seizing on full life support is one that does not enter my mind as frequently as it once did. When I think back to the days following Brit’s death I am more often reminded of family, friends, colleagues, and strangers who offered support to me and my family during our darkest hour.  I rarely think about having to track down Brit’s body as the hospital was slow in releasing her remains to the undertaker. I don’t think about how painful it was to write her obituary, the program for her funeral, and her eulogy but rather I remember that when I sent the order to Office Depot to be printed the manager not only printed the programs for free but created a beautiful poster of Brit that still hangs in my parents’ house today.

I still miss Brit every day. But I am now in a place where I allow myself to takes breaks from the pain of missing her and for brief moments relish the joy she brought to my life.

I still feel an immense responsibility to keep Brit’s memory alive.  I still talk about her and appreciate when others bring up her name because it means they remember.

So today, on the sixth anniversary of Brit’s passing I encourage all who knew her to share a story about her, to remember her, and to be thankful for all that she brought to this world.  As for me, I will share clips from the memorial video that played during her wake—a picture is worth a thousand words. Here are some tidbits as to why Brit was so special.

My favorite exchange with Brit:

Me: I am going to tell you a secret, you are my favorite.

Brit: I am everybody’s favorite.

In loving memory of Britney Nicole Wielgus, Aug. 6, 1998-Feb. 9, 2008, a life that was cut far too short.

Tracking Our Kids with GPS

As a former ACLU staffer who worked on privacy issues and the mother of a young nonverbal daughter with autism who wanders, I feel uniquely qualified to weigh in on the bill proposed—“Avonte’s Law—by Senator Schumer that would provide funding to the US Justice Department to pay for voluntary GPS tracking devices for children on the autism spectrum or who at risk for flight.

When I first heard of how Avonte Oquendo, a 14 year old, nonverbal, boy with autism wandering from away from Long Island school my heart sank.  How could the school let this happen?  But then I remembered I am only responsible for only one nonverbal child with autism, who wandered away from my house. The day Caroline wandered away was the scariest of my life.  What happened to Avonte is a tragedy and unfortunately it is a tragedy that almost every parent of a child with autism fears.

Children with autism are at particularly high risk for wandering, as many parents well know. It's estimated that half of children with autism are prone to wandering, according to a 2012 article in the Journal of Pediatrics. The majority of fatalities—60 since 2008—have involved drowning.

The press has largely referenced the Justice Dept. program as being for children with autism, though it is also for kids with other conditions and developmental disorders that put them at risk for flight. Devices can be worn on the wrist, clipped onto shoelaces or belt loops, kept in a wallet or sewn into clothing.

So while, I have professionally advocated for privacy rights for both adults and minors; and while, I was horrified to learn the public school district where my daughters will likely attend school was experimenting with RFID chips; I do support “Avonte’s Law”.  My family will likely be one of the families taking advantage of the program—given the opportunity.  However, I will share that I do have some concerns—mainly that the tracking devices will lull caregivers into a false sense of security.  It takes less than a minute for a child to drown or be hit by a car.  Having said that, I think the devices are a step in the right direction and further will provide an opportunity for local law enforcement to learn more about autism.

As is too often the case, it took a tragedy that captured the public’s attention to bring about change.