living with Anaphylaxis

living with Anaphylaxis
the birthday boy!

My boy becomes a teenager today! It feels like quite an accomplishment to have gotten him safely thus far. Hopefully I have equipped him sufficiently with wisdom and sense to see him through his teens! In celebration of his continued existence on this mortal coil, I want to share some positives on how anaphylaxis has helped us to appreciate and embrace life these past thirteen years.

A while back my MacBook got corrupted and it had to go to mac-hospital for a few days. That gave me some time and space to consider things and allow words and ideas to float around my mind rather than just flit past.  Reflections have mixed together and I would like to share some of them with you. When reading Psychologies as I waited for my train after leaving my Mac with the specialists, one question and answer jumped out at me from the Michelle Williams interview and stayed with me:

Interviewer: How do you deal with a role in which you have to imagine what it would be like to lose a child?

Michelle: The thing about being a parent is you run coexisting realities. The reason you’re so careful with them, in terms of safety, is because you know things can go wrong. So, it’s an awareness that we have as parents and one we try not to dip too far into. To lose a child is the worst thing in the world to imagine, but it’s not unimaginable.

As a parent of a child who’s gone into Anaphylactic Shock four times in his short sojourn of this planet so far, I am ever-aware of his mortality and the fragility of life. As is he. His big aim is to get to the ripe old age of 21. But it’s that coexistence of awareness and safety alongside daring to live a full life that I want to talk about. We are not depressives, or doom and gloom merchants. We are very conscious of his vulnerabilities BUT (and it’s a HUGE but) we don’t let it dominate our lives like an oppressive cloud or fog, rather it’s more like an almost imperceivable but ever-present shadow (most of the time!)

living with Anaphylaxis
Aars’ ever present shadow

I feel like it’s important to communicate how the coexistence of this ever-present shadow of Anaphylaxis emphasises something very wonderful. It enables us to enjoy and value each day of life we do get to share with each other. Day-to-day, month-to-month, year-to-year we are careful and mindful of our constant shadowy companion and that consciousness encourages us to live, to experience, to explore, to enjoy, to be honest, to be open, to be gracious, to be compassionate… it enriches our world with the appreciation of now. Inspiring us to live in the moment.

Severe allergies and Anaphylaxis are not Aars’ identity, they do not define who he is, they are not the be all and end all. Yes, they impose some restrictions and yes, they are a reality of our life. We have lived with severe allergies and the threat of Anaphylaxis for thirteen years, they are un-ignorable, inescapable facts of life for us. BUT we manage them. We are sensible and careful where we need to be, but we do not let them or fear, dominate or dictate or rule our existence.  It was really important for me to ensure that Aar’s knew that they did not have to hold him back, that he could live life to the max. That the fear of Anaphylactic Shock did not paralyse either of us – I parent by example. So I have had to be brave, to show him they don’t have to hold him back.  To dare to go off the beaten track, into the wilds on safari in Africa or a distant oasis in the Sahara or to live on the ocean in search of dolphins and sharks in the Bahamas.

living with Anaphylaxis
swimming with wild stingray

That said I am aware that I always capitalise Anaphylaxis – I can’t help myself – I am not sure why!? After Aars has gone into Anaphylactic Shock I hate it with a vehemence. I want to shake the world; both the idiots complaining about not being able to eat nuts on airplanes (for some reason an essential part of their flying experience!?) and the mums who like Cybill Fawlty go “Ohhhhh, I knoooooow! My child is allergic to dairy too, he can only have it at weekends” (I kid you not, this has been said to me).

When Anaphylaxis strikes – for my son I remain calm, confident, measured as I administer the AAI and call 999 (on the inside I am screaming with terror, pleading for him to breath, to survive, to live). The NHS have been amazing every time. The Paramedics, A&E staff and the Paediatric Consultants when Aars’ has had to be admitted as they couldn’t get the swelling down in his mouth and throat. After Aars has recovered from an Anaphylactic Shock, for me the shadow darkens and grows to become all encompassing; it looms dense and oppressive, almost monstrous in it’s threat.

There are other times when Anaphylaxis riles me. For example when the only way Aars can be part of a school residential trip abroad is when I go with him, because he’s too “high risk”. But again it means we make considered decisions about which trips he would benefit from participating in… What I am saying is that it’s not all hunky-dory every day, and the shadow occasionally takes on monstrous, threatening forms, BUT for the most part it’s presence enriches our lives and enables us to appreciate the time we do share together. It helps us enjoy life in the now, to stay in the presence and actually enjoy the moment we are in. Travelling has really built Aars’ confidence.

living with Anaphylaxis
enjoying each others company

Being constantly conscious of the finite and transient nature of our lives has enabled us to really enjoy the days we do have. My son is not timid or scared or weak or fearful. He is courageous, he is adventurous, he is loving, he is aware and he is strong.

Don’t get me wrong – after Aars has gone into Anaphylactic Shock I am hyper-vigilant, hyper-aware, über paranoid, and internally I teeter on the cliff-edge of terrified as his body remains hyper-sensitive for a couple of weeks. My emotional recovery time-line is much slower than his body’s recovery. I’d say I’m on the edge of fear for about two months after an Anaphylactic Shock.

Aars becomes a teenager today! I hope that I have given him strong foundations of self-care and courage, so that he’ll survive Anaphylaxis in the coming unpredictable teen years. For his birthday I’ve created a scrap-book of the thirteen years he’s been entrusted into my care, along with about 700 photos are tickets and boarding passes and programs of events we’ve enjoyed. I can see how blessed we are. We get on well, we are honest, we have to trust each other. I’ve had to administer the AAI to save his life too many times, I am 100% child-led when it comes to food – (as he is allergic to so many) I trust him to guide me in this area. He is fun, he is funny, and he thinks I am too – we make each other laugh and we enjoy each others company.

Two things have really stood out to me as I’ve been going through all the photos of his life so far:

  1. He really loves food!! He’s not afraid of it, he loves it!

  2. He has done some pretty cool things for a child about to turn thirteen.

living with anaphylaxis
Wolfies chips on Hove beach

I am amazed that Aars’ not afraid of food. When I was weaning him he had so many reactions to so many foods – I got scared of trying new things with him. I would put a dot on his arm, if no blisters immediately appeared I’d try a dot on his mouth, again if no blisters immediately appeared I’d give him a spoonful, if that did not induce immediate projectile vomiting then I’d give him a couple spoonfuls more and wait to see what happened. If he was OK the next day I’d try again with a little more… it was slow and for me very strange as many fruits, pulses and vegetables covered his arm in blisters and never made it near his mouth. I had never come across food allergies before I had him!

So I was cautious with food, and listened to him and his body. And we found safe staples. I have photos of him eating local food in Malawi, where they served him “The best bread he’d ever eaten.” I have photos of him eating an insanely large bun (bigger than his head) in an oasis in the Sahara – it was “The second best bread he’d ever eaten.” I have photos of him eating a safe crepe in France, a safe version of “brik” in Tunis, his first ever safe choc-ice in Malibu, safe Macca-cheese on a boat in the Bahamas. And I have countless photos of him scoffing crisps around the world and safe chips smothered in ketchup from safe UK takeaways. I also have endless photos of him eating all of our own culinary creations. He loves food – which is pretty impressive considering that egg, dairy and soya have nearly killed him with Anaphylaxis, and many other foods have cased projectile vomiting and blisters. To me it’s amazing, incredible and wonderful that he loves food (everyone who knows me knows I love it too) I’m glad that in spite of the severe food allergies he lives with I have been able to share that love with him. Anaphylaxis has not robbed us :).

living with Anaphylaxis
travelling off the beaten track!

Travelling has really built Aars’ confidence, every time we have gone abroad he has come home more confident and courageous – you need a little defiance to resist Anaphylaxis’ pull to scare you into staying.

Internally I found it stressful, I was armed with at least 4 AAI’s, I knew where all the hospitals with emergency facilities were, I had transliteration and translation cards to communicate and a suitcase full of safe food for him… Every time we travelled it was worth it. Aars’ made friends on each trip with children from all walks of life. He swam with wild sting-rays in the Bahamas, went on safaris in Malawi (the river one was genuinely scary when we were chased by a grumpy male hippo!) Aars’ rode a camel to an oasis in the Sahara desert, and swam in it’s stinky sulphurous pool! He’s cycled the beach path in LA to Venice, turned on Batman’s bat-signal at WB Studios in LA, he’s driven motor boats along the south coast of England, he’s explored the old sets and filming locations of Star Wars in Tunisia, learnt to row in the Lake District, pedalo-ed with me on the Serpentine, found fossils along the Jurassic Coast… he is not afraid but he is cautious and sensible. Outdoor activities are always the safest! But we’ve gone to cinemas, theatres, art galleries, exhibitions, sports events, music events, theme-parks… we never travel light – he carries his meds at all times and we have spray and wipes and sanitiser and…  we make sure we stay as safe as possible, prepped for the worst. But he’s not hiding in our house where there is no risk of contamination. He’s getting out there and living and experiencing a pretty full, fun life.

I love him. I enjoy his company and I hope I get to enjoy it for many days, months and years more (past his marker of 21). But just in case I don’t, just incase that thing which Michelle Williams described as “…the worst thing in the world to imagine…” happens; I treasure pretty much every moment we do have (the boyish snotty, farty, stinky feet ones are not really treasured, nor are the naggy, clean-your-teeth or wash-your-hands ones – but a part of me is soooooo happy that I still have him here to nag that I cannot get that frustrated). This is what that co-existence brings to us, to me: along with the shadow of Anaphylaxis is an opposing light of steady thankfulness and gratitude for each day we get to share. Both are ever-present and we are ever aware and mindful of them. They come hand in hand and we get to acknowledge them both day by day. Derren Brown expresses it pretty well in his book Happy;

“…we must connect with death in order to experience the richness of life…”

That is exactly what Anaphylaxis does for us!

I feel so lucky to have him in my world. We are used to the ever present shadow, it’s been with us since he was four months old, we are accustomed to managing it to ensure it remains just that – nearly imperceivable, so we can enjoy the light and life, creating precious memories.

living with anaphylaxis
ksar on top of the world!

I have always loved Khalil Gibran’s writing – he expresses so well how life and joy are inextricably linked to death and sorrow. I also love his writing on children in “The Prophet” and how they are entrusted to us as parents – check it out it’s less than a page long. The thing that hit me as I read through it, to create some art for the scrapbook I made for Aars birthday, was something I had never really noticed before! It’s right at the end:

“You are the bows from which you children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with his might, that his arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies, so he loves also the bow that is stable.”

The best thing we can be for our children is stable, flexible and glad! To allow stability to coexist with flexibility is a challenge but we can do it, and finding the gladness helps 🙂

Peace, Salem, shalom, namaste to you,

Love Rai x

Oh and these are recipes he’s requested I make for our celebrations this evening – just thought I should share his pick of the day vegan & gluten-free recipes ;)!

gluten-free pizza dough

  • Yield:

    3 large pizzas
  • Cooking Method:

    baking
gluten-free pizza dough

This is a wonderful free-from dough for creating your very own homemade pizzas. Your children can make their very own custom-made perfect pizza, topped with all of  their fave and none of the 'yucky' toppings. It's a really fun activity to do together, to help your children learn how to play with food and make something they can be proud of that tastes YUM!

Ingredients:

  • 1½ C warm water
  • 2 Tbs honey
  • ½ C oil (I use olive oil)
  • 3 Tbs ground flaxseed 
  • grind of salt
  • 3 C gluten-free strong flour (I use Doves)
  • 1½ tsp fast action yeast

Method:

  1. Add all the ingredients to your mixing bowl in the order provided above, then combine. I use the dough hook on my kenwood chef to knead the sticky dough for about 15 minutes.

    gluten-free-pizza-dough-recipe
    pressing it down onto the tray

  2. Then place in a warm spot and leave to rise for a couple of hours - the dough will double in size. When the dough has been rising for an hour and a half turn your oven on to 200°C.

  3. Once the dough has doubled punch it down and knead it again for another 10 minutes. Split the dough (it stores brilliantly in a tupperware box in the fridge for a day or two!). 

  4. Prep your baking trays with baking paper, you will need to add flour to the baking tray and cover your hands with flour too as the dough is sticky. Press the dough over the paper to the size you desire to create your pizza base

  5. Cover the base with your tomato & basil sauce, then your fave toppings - you can see I went for olives, artichoke and hot red peppers. Sprinkle your free-from cheese over the top. Your oven should have reached 200°C by now.

  6. Pop the pizza into the middle of the oven to bake for 12 minutes. Enjoy

Notes:

Let us know your favourite toppings on your home-made pizza's.

oh-soooooooo gooey chocolate cake

  • Yield:

    2 cakes
  • Cooking Method:

    baking
  • Prep Time:

    40 mins
  • Cook Time:

    25 mins
oh-soooooooo gooey chocolate cake

This is Aars' absolute favourite cake - it is gooey and sticky and not very pretty; but absolutely delish and über chocolatey. This is a really great gluten-free version of the cake I've made for him since he was about four years old. He requests it every birthday and it has never failed to delight the whole family from toddler to Great Granny! Always serve it warm - it's gorgeously gooey! 

Ingredients:

The Cake:
  • 1 C water
  • 1 C Sunflower spread
  • 4 Tbs (heaped) raw cacao powder*
  • 1 C gluten-free oats
  • 1½ C gluten-free self-raising flour
  • 2 C demerara sugar
  • 1tsp bicarbonate of soda
  • ½ Tbs ground cinnamon
  • pinch of salt
  • 2 C mini marshmallows*
  • ½ Tbs vanilla extract
  • 1 Tbs cidre vinegar
The all important icing:
  • ½ C sunflower spread
  • 4 Tbs (heaped) raw cacao powder* 
  • dash of salt
  • ¹/3C milk alternative (we used koko a thin coconut milk)
  • ½ Tbs vanilla extract
  • 3 C sifted icing sugar

Method:

  1. Preheat your oven to 200°C (fan) and prep 2 bread loaf tins with paper cases. 

  2. Pop the water, sunflower spread & raw cacao powder into a pan & place over a low heat to slowly melt, stirring occasionally.

  3. In a large bowl combine the oats, self-raising flour, sugar, bicarbonate of soda, cinnamon and salt.

  4. Once the ingredients in your pan are melted and combined, stir in the marshmallows, when they start to melt into the mixture add the dry ingredients from your bowl and remove the pan from the heat. Continue to stir until everything is combined and then add in the vanilla and vinegar - mix them in well.

  5. Now ladle the gloopy mix into your waiting bread tins and pop into the oven for 25 minutes.

  6. It's time to get to work on the icing as it needs to be poured onto the cakes as soon as they come out of the oven. In a clean pan add the spread, raw cacao powder, salt & milk alternative. Place the pan over a low heat and slowly melt.

  7. Once it's melted, keep it on the heat and add in the icing sugar, I do it in ½C batches sifting it as I go. When all the sugar has been added and the icing is smooth add the vanilla and take off the heat.

  8. When your cakes come out of the oven use a skewer to stab some holes in it and pour the warm icing over the top. Leave to cool but ALWAYS ALWAYS serve this cake warm! 

Notes:

*if you don't have raw cacao powder use normal cocoa powder
*if you don't have mini marshmallows chop up some big ones! 

Use your families favourite milk alternative and if you don't need to be gluten free this cake works brilliantly with normal oats & flour.

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