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Anaphylaxis, Blurriness and Life Lines

My son was gasping for breath.  I felt my baby, my seven-month-old Lumen — whose tongue was swollen and whose lips were so inflated his top one was blocking his nasal passage — slipping away. And I didn’t know what to do because I didn’t know what was happening.  He was crying, wheezing and burying his head in my chest.  And then he closed his eyes.

I called emergency, and when the ambulance arrived and checked his vitals the paramedics informed me that he had suffered an anaphylactic reaction.  This was to be the first of four within a matter of days.  All of them were similar, except for the third, when he woke up at 1am with his left eye so swollen he couldn’t open it. He stirred and then started crying hysterically, and because due to recent events I was sleeping with the lights on, I could see that this reaction was different.  He couldn’t catch his breath, and he was floppy.  Anyone who knows my Lumen knows he’s not floppy, even when he sleeps.  Two days prior, I was taught by the A&E doctor how to administer the EpiPen.  And in those early hours, I jabbed my son in the outer, upper third portion of his thigh. His demeanor changed.  He smiled at me, and he was bouncing up and down on the sofa.  If one administers this adrenaline injection one is required to call emergency.  When the paramedics arrived this time, they informed me that I may have just saved my son’s life.  Bittersweet words for any parent.

When we walked down the stairs to climb into the ambulance, I had to hand my son to the paramedics because I could not stop shaking and crying and feared I might drop him.  In the ambulance, they monitored Lumen’s vitals.  Because his heart rate and blood pressure continued to drop despite the injection, the paramedic said they would have to turn on the siren and inform the resuscitation team at the hospital to be ready.

The last month is blurry.  I see Lumen, and I see his big brother Enlai.  I see them giggling and crying.  I see both of them scared, sometimes for the same reason, sometimes for different reasons.  I see the inside of ambulances, with maternity kits, defibrillators, and the irony of gurneys branded with Pegasus.  I see eczema and blood, a nurse’s empathetic visage, and words on paper I don’t want to read.  I see life all around me, and again, I see death.

There are questions about life and death that I will never know the answers to, and maybe I shouldn’t.  As if he was following some sort of foreshadowing brief,  Enlai was asking questions about death and dying the week prior to Lumen’s anaphylactic reactions.  “Ma, what does ‘dead’ mean?  Will you die first or will I?”  I have my own hypothesis about what happens to humans when they die, and I shared my theory with Enlai.  Although he is five going on about 20, despite my explanation that we humans are unaware who will die when and that chronology doesn’t always factor in dying, he insisted that I would die first.  I responded that I don’t think we can say this with certainty, and that when a friend read my palm years ago, he declared that I had the longest life line he’d ever seen.  Enlai asked what a life line was and why I was talking about my palm, so I translated.  “Enlai, I will be here to take care of you and Lumen until I’m very, very old,” I said, and added, “Lumen and you will always have each other and should always look after one another.”

During the course of Lumen’s anaphylactic reactions, I couldn’t stop myself from thinking about the cemetery where my granny is buried.  There is a section for babies, and I would often wander to this section after visiting her grave.  I don’t know why.  I remember thinking how small the plots were and how short of a span that dash on the gravestone represented.  I am not a morbid person, nor do I have a fascination with death.  I do, however, have an appreciation for the confrontation and acceptance of death, and for artists such as Damien Hirst and poets like Emily Dickinson and Edgar Allen Poe, who underscore death in their respective art and poetry.  They, I believe, have a special understanding of life and what it is to live.  Viewing and reading their nods to mortality, I seem to appreciate life more.  I live more fully.  I live and I laugh.  And I love.

Despite the fact that food allergy-induced anaphylaxis is not a death sentence, it can be life-threatening, and this scares me. US data extrapolation — with similar findings reported in theUK — shows 150 deaths annually per 100,000 people, and a study in Denmark detailed an incidence of 3.2 cases of food anaphylaxis per 100,000 inhabitants per year with a fatality rate of approximately 5%.

The term anaphylaxis comes from the Greek words ana, meaning against and phylaxis, meaning protection.  But Lumen is not against protection.  He has me, a vigilant mom who loves him and his brother more than anything.  The gods, or whomever sent Lumen to me and then threatened to take him away four times, have only proven that they do not know me.  I’m biased, to be sure, but I know the world needs Lumen.  And I’ve reassured Enlai by showing him Lumen’s life line, which is as long as they come.

Category: Allergies, General, This Parenting Stuff

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One Response

  1. Liz says:

    My heart aches with what you, Lumen and Enlai have been going through. God is genuinely with you and Granny is walking beside you.

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