Turning Texas Blue

I am doing my duty to turn Texas Blue- I moved to San Antonio.

I will be completely honest, Texas was on my list of places I never cared to live. However, when the opportunity to be principal of Anne Frank Inspire Academy was offered to John--what was going to say--Texas?!, Hell No! Of course not. I did the responsible thing, what any loving wife would do,  I encouraged John to follow his passion and after he accepted the position and there was no turning back, then I started to complain.  I am only human, he wanted me to move from Chicago to Texas.

I have been pleasantly surprised by several things in Texas.  First, almost everyone I have met has been super friendly--but so much so that it is turn off. I love our new house, it has a huge yard and plenty of space for the ladies. Also, we decided last minute that Caroline needed to take advantage of her Early Intervention benefit before she aged out of the system.  We have already had an intake interview and services are starting on Friday!

So while Texas is never a place, I intended to raise my family--I will admit I have been pleasantly surprise thus far.   But you know me, here are some of the downsides--No Portillo's, I haven't found a park or playground yet, and it is humid!

Caroline's Mom

Caroline was born in Arizona. In Chicago, I became her mother.  Bonding with Caroline was difficult-I was not allowed to hold her until she was a few days old, it was nearly a week before I was allowed to try to nurse her, and she was fragile.  The pain of losing Brit was still real, I was scared to bond with Caroline until I knew she was going to be okay.  I held her while she cried for hours and hours, I tried to feed her, I took her to doctor after doctor, I advocated for services before most parents would admit there was a problem, and I reinforced the therapy at home.

In Arizona I worked full-time but mostly from home (I accepted a pitiful salary in exchange for Caroline being able to attend meetings with me). In Chicago, I began to work at an office. When I left Caroline the first day, it was so emancipating. I  realized just how much time I spent focused on all that Caroline couldn't do or her medical involvement. This was partially because of the countless hours spent every week speaking with doctors, therapists, and care coordinators.  However, when I took a break from constantly thinking about her challenges--I was able to transition my thinking.  I was able to enjoy my daughter, to play with her without thinking about how the play might help her achieve a certain milestone.  I was able to enjoy her joyful, loving, and spirited self.   I was able to become Caroline's mom.

I have always told doctors, "I need to know if we are saving for college or for Caroline's care after I die."  It is a lot of responsibility being Caroline's mom. I am working on realizing that I am also Vivian's mom, John's wife, a friend to a few, and someone with needs of my own.

Tomorrow night, the ladies and I will board a plane for San Antonio and start the next chapter of our lives.  During this chapter, I will learn to ask for help, not allow those who add unnecessary chaos to be part of our lives, and will share my journey for me,  for  fellow travelers and for those who just want to laugh and say, "I can't believe she actually put that in writing."

What Does it Mean?

The words stung like nothing before and that is saying something as I am no stranger to tragedy or adversity.  I had been asking the question for nearly three years but now that someone was willing to answer the question-I wished I would have never asked.

Is it better to know?  Of course, it is.

Will I be able to come to terms with it? In good time.

What are the next steps? Fight, fight like I have never fought before.

Caroline is engaging, hardworking, funny, and joyful.  She also doesn't sleep often, is fed through a g-tube, has over a 40% developmental delay, and is medically involved.  And now, one of the best developmental pediatricians in Chicago feels like, "Caroline is on the Spectrum...she is not a typical presentation but she is on the Spectrum."

When I heard those words, the first thing I thought was at least we have an answer. But I didn't stay there long, I immediately drifted to do I agree with diagnosis? And have been stuck at what does this mean...for Caroline, for our family, for me??

I choose to love him for all the things he does right and not to make his life a living hell for the mistakes he makes, this is my resolution. I resolve when my husband does something that sets me over the edge to remember:

• I am lucky to have a husband who loves me to the moon and back,
• My daughters have the most amazing father in the world,
• Walking the dogs during inclimate weather, taking out the trash, cooking dinner, and cleaning the kitchen are things I rarely, if ever, have to do because my wonderful husband,
• When I am not feeling down or just exhausted he will do the bedtime routine so I can decompress,
• My husband respects my career and ambition and takes on amazing amount of responsibility when I travel or work late,
• There is nothing more I love than laughing with my husband,
• At my ugliest he reminds of my redeeming qualities

 

The Choice to Remember the Good

Today, I am making the choice to love my husband for all the things he does right and to not make his life a living hell when he mistakes.  During the trying times, I find myself forgetting all the little things John does to make my life a little easier but I cling to his mistakes.  Therefore, the next time he does something that gets me mad I resolve to remember:

• I am lucky to have a husband who loves me to the moon and back,


• My daughters have the most amazing father in the world,


• Walking the dogs in inclimate weather, taking out the trash, cooking dinner, or emptying the dishwasher are things are I rarely have to do,


• My husband supports me and my professional pursuits--he takes on a tremendous amount of responsibility during my frequent travel


• No one challenges me, makes me laugh, or understands me like my husband.

I know I will probably still be frustrated with him after remembering these things but I expect my response will be much more metered.  When our daughters do something wrong, I take a deep breathe and think before acting--I owe my husband at least as much.  I also need to remember that his mistakes are likely sleep induced just as is my short temper.

So here's to remembering the good.

Sucker Punch

[caption id="attachment_130" align="alignright" width="448"] Brit's smile could light up a room[/caption]

Four years ago today, Brit lost a hard fought battle and I lost a piece of my heart. When Kubby, Brit’s nurse who terminated support, looked at me and nodded I was certain that the hardest part of my life was over. I had watched Brit suffer for weeks, I held her hand as she left this world…does it get any worse? Yes, it does. Every day since, I have had to wake up knowing that Brit fought courageously for her life and nearly won only to have been sucker punched by Baxter International, Inc while countless regulatory agencies stood idly by.

"It is now well-known that in order to increase corporate profits, Baxter International and SPL decided to purchase their heparin (referred to in the companies’ own internal records as “the cheap stuff”) from an overseas Chinese facility that the companies knew had never been inspected by the U.S. FDA or any Chinese regulatory officials. (When the Chinese plant was finally inspected by the FDA after the heparin contamination crisis, multiple violations were found, resulting in an import ban.) It was also uncovered that Baxter and/or SPL completely failed to establish and conform with quality/purity specifications, including an impurity profile, failed to understand, let alone control, their supply chain, and did not conduct the testing that they promised the FDA they would conduct. The specific individuals who added the contaminant to over half of the nation’s supply of heparin, however, have never been identified."

Brit was making a remarkable recovery from subdural empyema (pus on the brain sometimes caused by sinusitis). Brit underwent two surgeries with no complications that successfully removed the pus. After the procedure, physicians inserted a PICC line for antibiotic medication to prevent post-surgery infection. The PICC line was flushed with heparin to keep the antibiotics free-flowing. A blood thinner was an essential aspect of her treatment; unfortunately, for Brit Baxter International thought increasing their profit margins were more important than her life.

Doctors were very impressed with Brit's response to surgery and therapy.  In less than a month, her doctors and therapists agreed Brit was stable enough to finish recovering from home.  On the day she was supposed to go home she spiked a fever and was returned to the PICU.  Blood was immediately taken but none of the cultures ever grew...doctor's did not know what to make of the unexpected and unexplained deterioration of her condition.

Britney’s death was painful and humiliating but she was dignified and courageous. She lost control of her bodily functions, spiked very high fevers, experienced terrible nausea and vomiting, rash, and was in pain I would not wish on my worst enemy. The doctors could not identify the infection that was causing the fever so in her last days Brit endured countless painful and scary medical procedures--all before having a complex seizure that required doctors to put her into a medically induced coma she would never wake up from. On her last day with us, Brit’s heart stopped several times. The first time the doctor was able to revive her with just compressions but subsequent episodes required the assistance of multiple crash carts. As a last effort to save Brit, doctors decided to put her on ECMO (similar to heart-lung machine) to give her heart a break while her body was metabolizing the medicine that put her in a coma. By now Brit’s body was so fragile the surgery had to be performed in her PICU room as she was not stable enough to move. Brit survived the procedure but it did not help. The doctor called my family into a conference room and told us despite Brit receiving the assistance of numerous forms of life support including ECMO her vitals were neither improving nor stable. Despite their best efforts, doctors could not increase Brit’s blood pressure…rapidly falling blood pressure was one of the adverse reactions to “the cheap stuff.” As was: high fever, nausea, vomiting, and organ failure.

My dad was in a hospital across town being treated for his own health issues. We could not get him transferred to Brit’s hospital. So my mom went to tell him, in person, about Brit’s rapidly declining condition. And we made the unthinkable decision, to terminate life support and allow Brit at the age of 9 and ½ to leave this world. She still slept with her baby blanket every night.

To me anyone who was involved with the heparin contamination is responsible for not only murdering my sister but also for torturing her. Who does such a thing? Brit was a vibrant and loving 9 and ½ year old. She was an “old soul” with an infectiously warm smile and caring personality. Brit danced like no one was watching and loved like she had never been hurt. At 9 and ½ years old she embraced life…I often wonder what her passion for life would like as a teenager. She would be 13 years old now, but instead she has been without life and without us for 4 years. She was not able stand up to my wedding, meet her three nieces or her youngest nephew, attend middle school, or participate in countless other activities.

I miss Brit terribly and it pains that she suffered so during her last days on this earth. Please share Brit’s story and put a face with the need for corporate responsibility.
In loving memory of Britney Nicole Wielgus August 6, 1998-February 9, 2008...you live on in our hearts.

Cruising

Raising a child who is labeled by medical professionals as "failure to thrive", "developmentally delayed", and "medically involved" is exhausting and emotionally taxing.  Don't get me wrong, I love my daughter and think she is amazing. Her smile lights up a room, she is very happy, and she tries harder than anybody I have ever met.  But her care is exhausting.

Caroline receives five hours of Early Intervention therapy every week, she is followed by seven specialists, our insurance regularly denies payment of claims which means hours must be spent going through the appeals process, trying to feed her by mouth is a long and frustrating ordeal just as it to feed her using her feeding pump in public.

Caroline started standing on her own yesterday, today she started cruising furniture.  I am so proud of her accomplishments because I know how hard she has to work to reach milestones that just come naturally to other children. Tonight, I want to celebrate Caroline's accomplishments and be her mom...tomorrow, I will return to being her care coordinator.