Living Our Definition of Normal :: When Families Face Lifelong Medical Situations

Our oldest son experienced his first ear infection at three months old while we were evacuated for Hurricane Katrina. At one point during our journey, we were with an aunt of mine who proclaimed, “He just needs some of the pink stuff, and he’ll be fine.” Pink stuff meaning amoxicillin; a term I was vaguely acquainted with through my own childhood illnesses, but far from my every day dialogue as an attorney.

Fast forward to April of 2006. 

James hospital bedBy that point, my perfect, sleeps all night, eats anything you give him, never cries baby was already very familiar with the pediatrician and ENT. Two sets of tubes, a spontaneous ruptured eardrum while on day seven of a ten day antibiotic course, and the steady, constant cough. On April 2, 2006, we were on our way to the ER as he wasn’t eating or drinking and was inconsolable. The diagnosis was pneumonia and resulted in a five day hospital stay. We did not realize it would be the first of many hospital trips.

To this day, I am thankful for two doctors who put their heads together to realize something wasn’t right. They decided to run an immunoglobin panel, and the results simply were not normal. At our post-discharge check-up, the pediatrician told me we needed to see an immunology specialist. Two days later, I walked into an outpatient CHNOLA clinic, not knowing that my world would never, ever be the same again.

By the way, when a specialist gets you in two days after first calling, something just ain’t right.

I walked out of that clinic after a three hour visit. Two and a half hours of medical history for my son, a twenty minute closed-door meeting among brilliant medical minds, and a ten minute conversation with a doctor and a resident that ended with, “You need to go straight to Boys CHNOLAChildren’s Hospital. They are waiting for you to admit overnight. We cannot cure his primary immunodeficiency, but we can treat it with monthly IVIG infusions.”

You cannot imagine (or maybe you can, and if you can, I am so sorry) the horror and the agony and the pain you experience in those first few days. The initial blast of words sucks and immediate true comprehension of a diagnosis is impossible as you just cannot “get it” right away. But the dawning realization of change over the next few days and weeks is utterly wretched. All of your hopes and dreams so quickly dashed before your eyes, or so it seems. You cannot believe this is happening to you, and you cannot imagine how in the world you can live like this or provide the medical care your child will need.

You just do it.

And then a funny thing happens. You do. You live, and you provide, and you make a life for your child that is happy and is their normal. Since that initial diagnosis, we have been blessed with two more sons with the same disorder (a long story), and we have made a conscious effort to make this world “our definition of normal,” as another PID family says. My boys look forward to their hospital visits as it means movies and treats and fussing over by beloved nurses and doctors.

I fight daily to keep away the “why my boys” demons. Rarely do I allow myself those moments of heartache and tears, as I fear they just won’t stop. Sometimes I just cannot help it, but I keep my breakdowns to myself – usually while I’m in the bathtub, hoping the running water masks the sounds of my sobs. My boys need me to be strong with them, not for them, as they are pretty tough. They know I hate needles, so I pretend like they need to hold my hand for IV starts. Giggles ensue, and when I hear, “Flushes beautifully,” I know the IV is set.

Many friends tell me often they do not know how I do what I do – the medications, the medical journaling, keeping up with appointments. If you asked me to tackle all of this ten years ago, I would scoff at your suggestion. Now, it’s become my routine. When you’re a mom, a parent, you just do what you’ve got to do for your child(ren). You don’t have a choice.

About Jane Chauvin

profile pictureI was born in Mississippi, and after my father’s retirement from the Air Force while we were stationed in Spokane, Washington, we returned to Louisiana. I identify home as the house in which my mother was raised, which my grandfather built. After graduating from LSMSA, I attended college in Michigan where I received a degree in English, and attended LSU Law School, where I met my husband. For eleven years, I was a prosecutor in Terrebonne Parish, and now I work with my husband in our law firm in Destrehan. We are the parents to three very different little boys, a big rescue dog, and a lazy cat. My oldest is teaching me the art of patience, as I am now regretting my heavy use of sarcasm. Our middle child is perfect at school, and I tend to believe he cloned himself as that child never makes it off of the bus. The youngest will be the ultimate cause of my hearing aids due to his frequent high pitched screaming over a destroyed block tower (thanks to the middle child) or a perceived slight (thanks to the oldest child). Every fourth week I am fortunate to spend a full day with my boys during their IVIG infusions to treat their primary immunodeficiency.

One Response to Living Our Definition of Normal :: When Families Face Lifelong Medical Situations

  1. Monica October 29, 2015 at 7:46 am #

    Thank you for this. While my son’s health problems don’t involve regular hospital stays, at 10 he started having horrible week long migraines that leave him unable to get out of bed, and leave he with a constant low grade headache most days. We’ve been trying different preventative medicines to get them under control, but few are approved for kids that young. And the combination of headache and meds has made his ADHD go from controlled by exercise and diet to needing to be medicated as well. Its hard at first, but then it becomes you’re new normal and you learn to cope.

    Hang in there!

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