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Happy Mother’s Day, from the He(art)

Lumen, Enlai and Spencer Finch piece

Lumen, Enlai and Spencer Finch piece

 

I have yearned for art over the last 365 days more than food, more than sleep, sometimes more than air. Just as I want my sons to appreciate art, to allow it to rouse or soothe them, to occasionally fall asleep or wake thinking of a particular artwork, to trust it when they can’t trust other humans or when they may doubt themselves, I have sought art to help me make sense. I have used it as my drink, my drug, my altar, my here and my now, and as a substitute for my if and when. It has served as my absolute over the past year.

My younger son Lumen is allergic to over 30 foods and has suffered anaphylactic reactions previously. While he did not suffer any this year, we found out he has new allergies. After the doctor informed me, we went from the hospital to an art gallery. After another doctor diagnosed him with asthma this year, following several A&E visits, two admissions and having to learn the difference between his four different inhalers, we went to an art gallery. Before and after Lumen’s many doctor appointments and various therapy sessions — occupational therapy, speech and language therapy, music therapy — for his autism, we visit art galleries and museums.

And when my older son Enlai has shown that his love of electronics in all forms seems stronger than his love of living, breathing beings, we go to art galleries. We discuss everything on the way to and from these galleries — religion, sport, literature, friendships, music, family, food. We talk about what an amazing, curious, funny thing life can be. He often gives me a difficult time because he’s not keen to go to a gallery, so we compromise. We go where he wants to go first — anywhere but the flat, in front of a screen — and then he indulges me with a gallery. And after we view the artworks, usually a few hours or a day later, he says thank you. Thank you for introducing him to something that made him think differently, that made him learn and value, that made him see possibilities.

Earlier this week, I went to a discussion between the artist Olafur Eliasson and Tim Marlow, the Royal Academy’s Artistic Director. I was touched by many of the things Eliasson related, including a couple of stories which pertained to children. He said that he believes his first leanings towards becoming an artist may have been after his parents divorced when he was eight years old. His father was an artist, and he thought that to win his attention, he would have to become a very good artist. He also said that when he was young, he was into breakdancing. He would walk around his house as if a robot, imitating breakdancing moves he had seen. Eliasson said that rather than tell him he was being ridiculous, his parents supported him. He spoke about their courage in championing their son in doing something nobody else they knew was doing, something that likely seemed very odd to other family and friends. And the artist noted that this is what parents should be doing — being their child’s or children’s advocates in whatever creative venture they decide to partake in.

I have no desire for either of my boys to become artists. I want them to become themselves. I want them to feel happy, to love and feel loved, to feel as though they have so much living to do, that they couldn’t possibly fit it all in in their lifetime. But I would like for them to understand that art is always there for them; it is a breathing creature full of stories, of adventures, of delicate gestures and horrid atrocities. It is full of tales of light and darkness, silence and screams, of madness, of bliss, of pleasure and pain that can only be depicted with a line or colour, form or space, rhythm or texture. Art is full of survival, of the ability to affect change. I want them to know that when artists such as Alberto Burri, a former doctor, and Sam Francis, who served in the US Air Force during World War II, sought to recover from and make sense of their worlds after the war, they both turned to art. I want them to be aware that there are countless artists who suffer from debilitating physical and mental illnesses, who rely on art to help them cope.

Enlai and Lumen know they can count on me for anything, including to be cheerleader extraordinaire for all their endeavours. And if they want something additional to depend on, and they decide to trust in art as I have, I hope they will remember with fondness the times we visited galleries together. I wonder whether Enlai will recall the moment we walked out of a gallery a few months ago, and he noticed me crying. He said, “You needed that, didn’t you, mom?” I responded, “Yep.” He said, “Art, huh?”. I said, “Yep. Art.” And we held hands and walked home.

This US Mother’s Day, I want to share with you some of the artworks that my boys and I have seen over the last year that have moved us, artworks that have given me air and optimism.

 

Enlai and Anish Kapoor piece

Enlai and Anish Kapoor piece

 

Lumen and Susan Hiller piece

Lumen and Susan Hiller piece

 

Enlai and Mert Alaş and Marcus Piggott piece

Enlai and Mert Alaş and Marcus Piggott piece

 

Lumen and teamLab piece

Lumen and teamLab piece

 

Enlai, Lumen and I and Clayton Campbell pieces

 

Enlai and Kim Asendorf and Ole Fach piece

Enlai and Kim Asendorf and Ole Fach piece

 

Lumen and Azra Aghighi Bakshayeshi piece

Lumen and Azra Aghighi Bakshayeshi piece

 

Enlai and Yuken Teruya piece

Enlai and Yuken Teruya piece

 

Lumen and Adam Basanta piece

Lumen and Adam Basanta piece

The Phosphorescence of a Two-Year-Old

020

 

You turn two today, my beautiful Lumen.  A couple of those 365-day spans have passed, and I am the most fortunate mother for having spent every single one of these days with you.

You, who only requires water to splash in, music to dance to, and open spaces to run in.

You, with your lengthy lashes, gentle eyes, nose that you’re proud to show me lately that you know how to pick, and that diastema smile and infectious laugh that accompanies it.  You, with your hair that is on its way to matching Dylan’s on the Blonde on Blonde album cover.  You, with your bear cub hands.

You, who jumps as if all the world were a trampoline, and runs as if receiving the silver medal was not an option.  You, who will attempt to climb walls, sofas, chairs, stairs, and over ledges, and when you succeed, almost always land on your feet.

You, who can’t stop giggling when you, your big brother Enlai and I wrestle and tickle in the bed.

You, whose favourite songs are Jay-Z’s “Dust Your Shoulder Off”, Aloe Blacc’s “I Need a Dollar”, the Alphabet Song, and Wheels on the Bus.  You, who likes to sing in your buggy as we walk the streets of London.

You, who is fascinated by Elmo, Peppa Pig, and Ben and Holly’s Little Kingdom.

You, who could swing on the swings for forever, plus or minus a few minutes.

You, who enjoys destructing every tower Enlai and I build for you and then running out of the room before we can catch you.

You, who has no flaps left in your flap books because you’ve enthusiastically torn them all out, and who doesn’t like to read books in their page order.

You, who are so independent already, and cheeky to boot.

You, who has been through so much in your short life with allergies and anaphylactic reactions but remains the epitome of resilience, the embodiment of the little fella that keeps on keeping on.

You, who comes to me for cuddles, and who I never want to let go when you do.

At only two, you seem to possess a bendable light, a light that shines around corners and softens rough edges.  Without being aware of it, you offer to those who are living in faint light to lather themselves in your beams.  And to those basking in borrowed light, you remind them of their own lustre.  You are my sweet, sweet Lumen.  Happy Birthday, my love.

 

2013: An Allergy Odyssey

I look at pasta and baguettes, at pastries and ice cream with disdain.  In the back of my mind I know they’re inanimate objects, but when I stare at them, I imagine they are lurking with malevolent intentions.  When I walk past bakeries, I sometimes resent that alluring aroma that invades my breathing space.  And when I pass the nut section in my market, I get this sick feeling in the pit of my stomach.  I’m not worried about what these foods may do to my waistline; I’m the mother of a child who is severely allergic to multiple foods.

Months ago, my now 14-month-old son Lumen suffered a series of anaphylactic reactions.  I suspected the culprit was milk after his first anaphylactic reaction.  What I didn’t imagine was that he would be allergic to over 20 additional foods.

After his second anaphylactic reaction, he was given a skin prick test and an immunoglobulin E (IgE) blood test which measures the blood level of IgE, one of the five subclasses of antibodies. The immune system makes antibodies, proteins that attack antigens, one antigen being food allergens.

During the time we were awaiting the IgE blood test results, Lumen suffered two more reactions, one from breast milk.  The doctor ordered me to go on an exclusion diet, eliminating all the foods he suspected Lumen might be allergic to.  While only trace amounts of the allergens were likely coming through my breast milk, these scintilla quantities were enough to cause a reaction.  This is exactly what happened.  As I was breastfeeding Lumen in the hospital, he started to develop a rash all over his face as well as become agitated.  The doctor who was sitting right next to me told me to stop feeding immediately.  She gave him an antihistamine and told me that I was no longer allowed to breastfeed my son.  What had nourished him exclusively for the first six months of his life was now threatening his life.

Test results in, the doctors confirmed that Lumen was severely allergic to multiple foods, including milk, eggs, peanuts, tree nuts, wheat, rye, barley, oats, soy, corn, peas, green beans, sunflower, sesame, lentils, chickpeas, coconut, strawberries, and bananas, among others. Read the rest of this entry »

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.