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High Five to my Birthday Boy

Lumen

You are a handful, my beautiful Lumen, in demeanour and now in years. I celebrate you every single day, all 37 trillionish cells you are composed of, your spiral curls, your smile that your brother says is the greatest smile he has ever seen, your movements, your hands, your infectious laugh which we should bottle up and distribute as a health supplement, your autism, your eyes and all the realms they see, your silence, your affection, your dozens of food allergies, your sincerity, your way.

You are that dancer – and spinner and jumper and hand flapper – who observers might think is crazy because they are incapable of hearing the music you hear. You are teaching me to listen to those overtures, those concertos, those symphonies you receive, and the songs become ours. You are that untrained coryphée who emulates a Nureyev you’ve never seen perform, using the spotting technique during your own form of pirouettes. I’ve witnessed you astound many an onlooker with your ability to turn and turn and turn and never fall over or suffer from dizziness.

I celebrate all your melodies and harmonies. And certain strangers do, also – the ones that smile at you when you sing your songs as we have our adventures around town. You’ve had two amazing music therapists – one who made us realise that music may serve to open the door to communicating with others, and another who complimented you on your perfect pitch. I’m happy you have expanded your preferred musicians to now include your two current favourites, Oasis and Regina Spektor.

I celebrate you, my non-verbal son, who is just starting to use words in relative context, words you’ve chosen based on what you’ve heard and on your own interpretations, such as ‘Emergency’, ‘Nanny Plum’ (character from the cartoon ‘Ben & Holly’s Little Kingdom’), and your brother’s name ‘Enlai’ when you are in sticky, frustrating situations. When you have had enough of anything, including your mama chatting to a friend, you say ‘Bye’ repeatedly. Not so subtle, but kudos for getting your point across. When you said ‘tickle’ – a word I’ve uttered to you countless times while tickling you and your brother – as you giggled mischievously and pulled the blanket over your head while we were playing on the bed, I cried. When you told your sitter ‘I miss you’ and hugged her after not seeing her for a month, she and I both cried. When you walked out the door with her and said to me ‘Love you’, I cried uncontrollably. You’ve not said ‘tickle’, ‘I miss you’ or ‘Love you’ since, but you saying them and my hearing them exists.

I celebrate your silence, which has taught me more about myself and humanity than I could have imagined. It seems ironic that your ma has a degree in communications, used to read the dictionary for fun, and is a writer, and now spends most of her time with you, often in silence. It serves as a basis for comparison, and I now have an appreciation for the other end of the communication spectrum, namely the economy of language, the gesture, the picture symbols. You and your ma have a quiet dialect in common – after a traumatic event as a child, I went through a period of choosing not to speak. You, my sweet Lumen, remind me of the candour, the poetry, of the countless stories that exist when a space is silent. We just have to learn to fine tune our ears.

I celebrate your strength, your resilience. What you’ve been through and continue to be confronted with on a daily basis is not for the faint-hearted. Your therapy appointments, doctor and dentist appointments, hospital visits – of which we’ve had close to 200 over the last year – haven’t dampened your spirits. You may have broken several blood vessels in your face when you screamed as I and three doctors and nurses had to hold you down to administer medication, but the vessels healed, and you’re here. You showed both your exasperation and physical power when I, two phlebotomists, and a play therapist worked together to take your blood. Although we were both covered in sweat from the ordeal, the mission was accomplished, and we walked out of those hospital doors and straight to the park. I carried your 24 kg/52 lb body the entire mile walk because you needed me to. You communicated with me by applying your version of an affectionate chokehold, and I tried to sing to you ‘Hush Little Baby’ until you gave me a look like, ‘That’s all you got right now? Pretty unoriginal.’ So I opted for ‘Home on the Range’. When we reached the park, you ripped off your plaster in one go, threw it on the ground, and ran like the wind.

I celebrate the way you look in my eyes, and the way you wrap your arms around your brother’s waist and place your head on his chest. And the way you look up at him like you are the luckiest little brother in the universe. You are.

I celebrate your bath time. I think you’ve had more baths than any child your age. And the way you help me clean the walls, the floors, the counters, even the hallway leading to the bathroom, with your splashing, is much appreciated. I may shake my head and murmur some words when you decide to jump right back in the bath in a fit of laughter, after I’ve dried you off and put on your various prescribed lotions and potions, but secretly, I love your cheeky manner.

I celebrate your love of churches. You don’t seem to be fussed about the religion, but you do like an impressive altar and stained glass windows. I have watched your behaviour in many a church, and it always makes me wish I could know what you know. We recently visited Saint James’s Piccadilly, and you made your way to the altar of the empty church. You knelt for a long period, stood up, sang a melodic tune, and then twirled at least 20 times. As we were walking out, a couple sat in the back pew smiled at us. They said you were wonderful.

I celebrate your appreciation for public transport as being more than just a means to reach a destination. You aren’t a fan of waiting for buses, but when you step in one, you find a seat next to a window, and although I can’t know exactly what you see, the various scenes seem to make you content. And you like the escalators and tunnels in tube stations. You look at everyone and every poster, and you run your fingers along the textured walls. You sometimes touch the fabric of a fellow passenger’s clothing or bag, especially those with intricate patterns or floral prints, and I always hope it doesn’t upset them. When one woman didn’t welcome your touch, I explained to her that you were autistic and didn’t understand social niceties, such as not touching strangers just because you are attracted to their garb, and she said she didn’t care and that you should keep your hands to yourself. I thought of her face and her words for the rest of the day, wishing she did care. When you started to tug on the strap of one man’s rucksack who sat next to you on the train, I told him you were autistic, and he offered to take his rucksack off so you could touch all of it. At his stop, he said goodbye to us and wished us a lovely day.

I celebrate your love of Lego, buttons, plastic food, earbud tips, and fake jewellery. Except when you put them in your mouth. All day, every day. When I try to swap one of your many ‘chewies’, you usually throw it and look at me as if to say, “If I wanted to chew on that, it would be in my mouth right now instead of this button.” I even celebrate your stubbornness. Most of the time.

I celebrate your starting school this September. Although the battle to complete your Education, Health, and Care Plan is one for the books, there is only one school I wanted for you, and my Lumen, this is the school you will be going to. I’ve only met and spoken to the headteacher and your class teacher a few times, but I can tell you they are both incredible human beings. You have not even started school yet, and they have already gone to great lengths to prepare for your arrival, including asking staff to attend a session in which I discussed how I handle your 45+ food allergies. They have asked what cleaning products we use at home so they can ensure they use the same safe products at school. They have said that I can call the school as often as I like throughout the day to check on you. On your second trial day, you were running around the outdoor play area. I stood next to your class teacher, discussing some of your likes and dislikes, as I watched you jump on the hammock swing. I have pushed you countless times on similar swings throughout London, but there I was, witnessing you sitting there with nobody pushing you. I couldn’t stop crying, and your teacher consoled me, asking if I was crying because I thought you would have an anaphylactic reaction while at school. I told her that my fear was that you would wonder if anyone would ever push you on the swing. Or that you would not be happy.

You’ve shown such happiness in your short life, despite the many adversities in your path, and this is how I always want you to feel. I don’t want you to feel you need to conform to the ways of my world, or your brother’s world, or anyone else’s world. I want us to continue to learn more about your world – a delicate, extraordinary world.

Happy Birthday, my Lumen, my light. I am so fortunate to be your mother.

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.