In Parliament – A Mother’s Tale

photoOne month ago, I had pleasure to speak at a Parliamentary event on Integrated Medicine and Juvenile Rheumatoid Arthritis. It was an amazing day in so many ways…To be inside Parliament (sadly, no photos allowed…)..to be sharing our story…and most of all, to have the opportunity to inspire other mothers  on similar journeys to me…I loved the whole experience.

While I was there, I met the editor of the British Homeopathic Magazine. He was interested in our story and my speech will be published here in the UK sometime in the next week or so.  For those of you who are not homeopaths, here it is…. (If you missed my last post, you might want to read this.)

A MOTHER’S TALE (my speech as given in Parliament) 

Isn’t it funny how some life choices lead us to the most unexpected places?

12 years ago, I moved to the UK with my work as a director in a large US company. My life was full and fast-paced. My work was fun and, I thought, challenging.

6  years ago I became a single mother when my daughter, Phoebe, was born. Sharing my life with my beautiful daughter was wonderful, but I was an ocean away from my family and things were far from easy. Little did I know but life was soon to become much, much harder for us both.

In 2011, inspired in part by my beautiful girl, I left the safety and security of my career to pursue my dream of becoming a portrait photographer. I knew this would be difficult, but I believed together we would make it. Setting up as a self-employed photographer inevitably meant life became tougher, especially financially. But none of this had prepared me for what was yet to come.

Two years ago, I sat with my daughter in a very plain, cream-coloured room and heard for the very first time the words “Juvenile Rheumatoid Arthritis”. Initially, I rejected these words out of hand –they couldn’t apply to us. But yes, in fact, they did! My little girl was three and half years old and diagnosed with a chronic disease.

Her left knee was swollen, and what had started as an intermittent limp, had become something more consistent. Over time, from May to September of that year, she had more and more difficulty walking, and often would wake crying in the morning. She would crawl to my room because she couldn’t walk, and my heart would break for her. Again and again.

My first response to that diagnosis was mixed. On the one hand, I was very much afraid for Phoebe and wanted to find out what modern medicine could offer. We started our medical journey with a general rheumatologist in our local hospital, who, when I didn’t want to inject her knee with steroids straight away, painted a very dark and dire picture. As a result of her words, I was fearfully focused on what the disease might do to my daughter and to her joints. We quickly transferred to a paediatric rheumatologist who listened to me, but who also painted an equally dismal picture. It seemed, according to the rheumatologist, there was no choice but to use some pretty heavy medication to treat my daughter.

Determined response
My second response to the diagnosis was a determined one. I have always held a belief that my mind and my body together can heal. I have always believed that diet is crucially important. For myself, I only used drugs as the very last resort, mainly because I didn’t want their side-effects. Holistic medicine, such as homeopathy, kinesiology, osteopathy, Reiki, acupuncture, reflexology, had all helped both Phoebe and I in the past. And so to treat my daughter’s inflammation, I wanted holistic medicine to be the primary course of treatment, using conventional Western medicine only at those crucial times when my daughter absolutely needed it. I wanted to support and not suppress my daughter’s body, to give her immune system the time and space to right itself.

And so began our journey with an elimination diet (in the beginning, Phoebe had a very long list of food intolerances), with supplements, with homeopathy, with kinesiology and with osteopathy. Her treatment took into consideration her whole self.  My healer worked and continues to work with Phoebe energetically, emotionally, structurally, chemically and nutritionally.

As many of you will know, healing through holistic medicine doesn’t happen overnight. And so in September of that year, when Phoebe’s knee was painful and not getting better, she received a steroid injection into the joint. About this time she was also diagnosed with Uveitis in both eyes, a serious condition associated with JRA which can lead to blindness.  Things were getting worse. For although her knee had responded to the steroid  injection, she soon after suffered another flare-up, this time in both knees with the uveitis continuing to affect  both her eyes.

At each of our hospital check-ups, I was put under increasing pressure to treat Phoebe with Methotrexate (MTX), an anti-rheumatic drug that can have some very serious side-effects including hair loss, seizures, confusion, blurred or loss of vision and, weakness on one or both sides of the body. This was something I was – and am still – adamantly against using. I was told in no uncertain terms that with her presentation of symptoms the chances of remission without MTX were slim to none. I was told I was damaging my daughter. And on more than one occasion, the doctors reduced me to tears by the things they said.

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A stubborn lady
Luckily for Phoebe, I can be one stubborn lady. I held my ground. And last June, more than a year after it started, the inflammation disappeared from Phoebe’s eyes and her knees. She remained inflammation-free for nine months. Two months ago, Phoebe’s symptoms returned. However, this time she’s not in pain and her mobility has been little affected. Thankfully, we work VERY closely with our homeopath-kinesiologist and Phoebe is now seen at Great Ormond Street Children’s hospital. But as the medical staff there will tell you, I continue to be as determined as ever to support her system in healing with minimal drug intervention.

That first year following Phoebe’s diagnosis was by far the hardest of my life. On top of the emotional strain of learning my daughter had a serious illness, I felt like I had to fight the system that was in place to support and heal her.

There were no easy answers to Phoebe’s condition from complementary and alternative medicine either. Thank goodness for the Internet! I spent hours researching and spoke to many different holistic therapists and doctors. Phoebe and I saw and spoke to people both here in the UK and in the US, before I found the team of carers that now work to support Phoebe today.

You may be wondering what all this cost me. The simple answer is – quite a bit. How could I afford this? Keep in mind that at the time I was in the second year of setting up my own business, had yet to make any money and was a single mother. And yet in my mind I knew I HAD to afford this.

In terms of both money and time Phoebe’s alternative care was and is expensive. Sometimes we have three or four doctor visits in one week, most of which I pay for. Our food bill has more than doubled because we now eat a primarily Paleo diet: lots and lots of organic vegetables and very high quality, organic meat and wild fish.  Phoebe is taking lots of supplements too, which are also expensive. And every day, on top of being a single mom, on top of running my own business, I spend two to three hours in the kitchen cooking or making fresh juices and smoothies for Phoebe.

For me, this was simply a choice of priorities. Her health and my health come first. Holidays, clothes, eating out, all these things come second.

Is it easy? No!

Can it be done? Yes!

Do I believe Phoebe is healing? Undoubtedly, yes!

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Six gifts
Anyone who knows me knows that I think of these last two years as a journey. As difficult as it has been, this has been a time for me of immense learning and a time that has presented me with many, many gifts. And I would like to share six of these gifts with all parents facing a diagnosis of JRA or any other autoimmune disease.

  1. Trust. Trust yourself. Trust your intuition, especially when it comes to you or your child. You are different from any other person. You know your child better than anyone else. You will know deep down when you are on the right path.
  2. What you think and what you say counts. I never say “my daughter has JRA”. I also don’t think of my daughter as sick. She is healing and I see her as whole and well. When she could not walk, I would visualise her running across the field. I would talk to her about the time when she would run. In fact even today, we often march around the park chanting: “My knees are better, my eyes are better, I’m inflammation free.” Silly but effective!
  3. What you eat matters. Period!
  4. There is no “one size fits all” in relation to your or your family’s health. What works to heal one patient will not automatically work to heal your child. The best thing you can do is to find a gifted and compassionate holistic healer, preferably one with training in multiple healing disciplines. And then find a rheumatologist and ophthalmologist who are sympathetic to your viewpoint. They may not agree with you. They may not understand your methods, but at least you can work together for your child.
  5. Be patient. Holistic medicine takes time. It took months if not years to knock my daughter’s immune system out of kilter. It is taking a similar amount of time to bring it back into balance.
  6. Make friends with your fear. Reading this you may think I’m supremely confident and secure in my beliefs. You may think I am without self-doubt when it comes to my decisions as a mother. But that is only because I work all the time on recognising, but not being driven by my fear.

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Three wishes
Before I close, I would like to share these three wishes with you.

  • Firstly, I wish for CHOICE. I wish our GPs and our consultants would present information and healing options to us. I wish there were a way that we could work together with our doctors to choose and create a healing treatment plan that utilises the best of Western medicine and holistic medicine in combination. I know other countries are doing this. Why can’t we?
  • I wish we could approach healing with the WHOLE person in mind. As I teach yoga I know that tight hips are not just tight hips. To ease the tightness, the whole body must be worked. Often the mind must soften too. It is the same with autoimmune disease. In my experience, my daughter’s sore knee is not just a sore knee or a wayward immune system. Her issues can be healed but not without considering ALL of her.
  • And lastly, I wish for more SUPPORT and CONNECTION. This has been a very lonely journey for me. Thank goodness for Facebook and the encouragement I received from my friends there. How grateful I am that I met Lauren Vaknine from the British Homeopathic Association, who supported me at a time when I felt very alone. How I wish there was a way to better connect like-minded parents and patients together.

I hope mine and Phoebe’s story offers hope and encouragement to someone embarking on their own healing journey. Namaste!

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Here, after the event, with Lauren Vaknine who was instrumental in putting together the entire day.

Denise Balyoz

Denise is a single mother with a passion for healthy living, eating and moving. She is yoga teacher and a family portrait photographer who leverages her American roots and makes her home in Windsor, UK.  You can find more of Denise’s work and her story on www.denisebalyozphotography.com and www.theukmama.com

 

My Journey to Parliament…

family-photographer-ukPoor neglected blog. It has been a while since I’ve posted. And so it feels right that I come back, not with an update on photography, or yoga, but on us…On our personal journey with health and healing.

It has been two years almost to the day that I first heard the words ‘Juvenile Rheumatoid Arthritis.’ When the doctor first said them, my brain rejected his words out of hand. No way. Not us…But, in fact, yes way. They were for us…for a time, at least.

In those early days, my Mama-brain and Mama-heart went to battle. In every way that I could. I was soaked in fear for my girl. My mind was heavy with the dire possibilities and prognoses and and I grasped at any straws I could find. I spent days trawling the internet, looking and learning. I spent lots of money and even more time seeing doctors in both Western and alternative medicine.  And I spent hours upon hours in the kitchen preparing healthy food…specialised food that would support my girl’s body in healing. Emotionally, I fought my own internal fear…and I also fought against the dire gloom-and-doom of our (Western) doctors…and even some of my friends.

Plain and simple I wasn’t prepared for the roller coaster of that first year. It was soooo hard.

But deep down, I knew we would be healthy again, and in the end, we were.  Last summer, all the inflammation left and my daughter spent 9 months in remission. And so, it was a bit of a surprise this Spring, when some of the symptoms came back. But this time, I am no longer fighting. I continue to care for her and support her body to heal. Yes, I still spend LOTS of time in the kitchen. But I am no longer fighting a battle in my mind. I am no longer fearful. I believe, deep down, that she will be in remission again. And so she will. (I’ll keep you posted…)

In previous posts, I  blogged about the gifts this journey has given me.  One of those gifts has been to meet  wonderful people. Very early on, I met Lauren, a now 29-year old, JRA survivor. This determined woman had determined parents who, so many years ago, bucked the system to find homeopathic and alternative medical treatment for their girl.  I can’t imagine how hard that must have been without the internet.  Lauren has used her experiences to write and campaign for homeopathic and alternative treatment for JRA. She spoke in Parliament (…and thus how I found her). We became Facebook friends and connected on Skype.

At the time when we met, I remember thinking that I would love, one day, to contribute to the effort to build awareness on alternative healing…for JRA and other autoimmune diseases. Amazingly, that one day is now here.

Next week, Lauren is hosting an event with David Amess, MP, in Parliament. This event is all about JRA and alternative healing. Lauren has invited me to speak at this event and share my story.

And so, on Wednesday, this American, single mother with determination, unusual beliefs on health and healing and (thankfully) a love of cooking will be speaking in the home of the British political system.  How amazing is that!? Wish me luck.

PS. If you know anyone with JRA or autoimmune issues interested in attending, please let me know. I’d love to get an invitation to them. :)

 

 

 

 

Phoebe’s World: Resting on a Mushroom

For me, childhood was a time of dreams and fantasy. It was a time of fairytales and believing in magic. Nature was (and still is…) a wonderful thing. Gathering acorns, twigs, leaves, stones and shells was just what I did. A centipede. A mushroom. The clouds. A rainbow. All of these thrilled me. As they now thrill my daughter.

Because there is magic in not forgetting our childhood…I have decided to create a series of special portraits. This is Phoebe’s world. I hope you enjoy it with me.

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5 Little Fairies Came to Tea…

Last week, my little fairy girl turned five. Four little fairies and one pirate-fairy came to celebrate. It was a WONDERFUL afternoon.  And for me, it was just a little bit emotional…not just because my little girl will soon need two hands to count her age….but because last year, due to her diet, I COULDN’T make her a birthday cake. How grateful I am that she is healing. And this year we had a very special chocolate-almond cake. Recipe here

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Beautiful Girl

Every once in a while, look back to the beginning and remember what it was that made you fall in love…Denise-Balyoz-Child-portraits-Berkshire-Surrey

Portraits on the First Day of School

The first day of school. I remember when that sounded so foreign to me…and so far away. And today here it is and she is ready. Perhaps it is obvious to her that I am not so much. Yesterday she said, ‘Don’t worry, Mama. Even when I’m 18, I’ll still be your baby.‘  I think she thinks that 18 is very far away. I suspect it will be here before we know it.

All that matters now, though, is that she went off happily and proudly. Here we go into the next chapter of growing up….

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Hallelujah – a Phoebe Update

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As many of you know, just over one year ago, my daughter was diagnosed with juvenile rheumatoid arthritis…and shortly thereafter, uveitis (inflammation in the eyes…common in some children with JRA).

It has been a year of challenge and heartbreak. It has also been a year of determination, hope, change and learning.

Those of you who know me, know that I am holistic in my approach to health. Homeopathy, alternative medicine, diet and natural supplements are my first port of call.  And so, this is what I turned to  to help my daughter regain her health.

But, despite an immense expense of time and money, we never seemed to get any good news from our check-up visits.  The pressure on me to use Methotrexate, a strong immune-suppressant drug, was mounting….

FINALLY today, we had some good news. The pressure in Phoebe’s eyes are back in the normal range. And the inflammation is very, very minimal. What a massive relief. I cried, but I could have danced…and hugged Phoebe’s doctor (if he had looked at all comfortable with that. He didn’t, so I didn’t…)

What have we done to help Phoebe?

Well, firstly, Phoebe is on a what you might call a whole foods Paleo diet tailored to her. We eat lots and lots of vegetables, green juices and green smoothies, meat and a little fruit.  Occasionally we have some quinoa, millet and amaranth. We also stay away from nightshade (tomato, potato, pepper and eggplant) because they can irritate the joints. We also stay away from some eggs and a few fruit and vege that she has shown to be intolerant. All of her food is homemade, fresh and as organic as possible.

Phoebe is treated with homeopathy and food supplements, as determined by our homeopath-kinesiologist.  Phoebe also sees an osteopath and she responds well to this work. We are currently under the care of Great Ormond Street Hospital and we do use steroid eye drops twice a day (I’m hoping we’ll be able to reduce this soon.)

I don’t know where this next year will take us. But I do believe we will come back to health.

On our journey to and from Great Ormond Street today, we passed a busker with a guitar in Waterloo station.  I don’t remember what he was playing when we first went past. (Though Phoebe stopped and said she liked his music.)  On the way back, we passed just as he sang the chorus to Hallelujah.

Hallelujah indeed. Goosebumps on my arms.

And so much gratitude…

If you fancy a listen: Here you go

Mother’s Day


I love what I do…and even more, I love that, in what I do, I get to meet lots and lots and lots of mothers.

I love seeing mothers who are just brand-new at mothering.  And I love meeting mothers who are about to send their not-so-little ones out of the nest.

But I have noticed that something strange happens to us, women, when we become mothers.  We put our children first. (Of course, we’re there to care for them!) But we also pull ourselves out of the picture (literally!). Most of my mum’s tell me that their portrait session is all about the kids. Many of them are reluctant to step in front of my lens.

I can’t point any fingers. I am describing who I used to be.  I have hard drives full of images of my daughter. Only a handful of those include me.  My excuse: I’m the photographer. I’m behind the camera.

This year, I decided to take on a personal self-portrait project. This project is the best thing I have ever done. Yes, I’m capturing me. But more so, I’m capturing my daughter and I together.  She loves nothing more than getting involved when I set up the tripod and the remote….and I…well, I adore these pictures of us together.

Happy Mother’s day to my mom and to all the moms out there.

Juvenile Rheumatoid Arthritis: Our Journey 9 Months On…

Nine months ago, my life changed.  Enormously.  My then bubbly, cheeky, active three-year old was diagnosed with Juvenile Rheumatoid Arthritis.  (I blogged about it here.)

Back then, I didn’t know JRA existed.  Today, I know a whole lot more…and my bubbly, cheeky, active four-year old girl still has JRA with the added dangerous complication of Uveitis (inflammation in her eyes.)

The last nine months of our journey have been so many things: emotional, challenging, time-intensive, educational, magical, all encompassing, full of gifts, full of sadness, full of growth.

In part, due to my belief in alternative as well as Western medicine, we now have a team of people working for my little girl.  We have a rheumatologist, an ophthalmologist, a functional doctor, a kinesiologist/homeopath, an osteopath and a pharmacist at Boots with whom I am now on a first-name basis. All of the teachers at school support us and help me to give her her meds when needed.  Friends and almost-strangers have sent me their encouragement, support and advice via Facebook.  For all of this, I am grateful.

I have learned so much…about the immune system, about food, about supplements.  I now cook regularly with coconut products that I never previously knew existed.  And because my daughter eats no wheat (along with a slew of other things), my own diet has changed for the better.

I had hoped, as every mother would, that our journey with JRA would be a simple one. Some children with this disease do heal and end up in remission. I had hoped that, through alternative medicine and lots of dietary care, this would be our story.  It may still be. But I now find myself having to strongly consider starting my daughter on Methotrexate, a serious drug with serious side effects. This is not an easy decision.  There are no easy answers.

Nine months ago, rather naively, I wrote:

1. In everything, there is always a gift.

2. Ask for help.  It will arrive…somehow.

3. Trust. And believe. Always for the best.

I still believe these three things are true.  But perhaps I might add a fourth….

4. Embrace your challenges. Make friends with them. In thanking them, you will find a way through.

I will let you know when we do.

Our Babies and their Schedules…

Time. Schedules. Being early. Being late.  How wonderful that our children have no concept of time…and how frustrating! Over and over, I hear myself saying to my daughter, ‘Hurry. We are late!’  And ‘Hurry!’ doesn’t make her move any faster.

With little ones, things take the time they take. Babies arrive on their own schedule. Children travel at their own speed in their own world. My daughter often takes 15 minutes to put on her shoes.

But then, every once in a while out of this slowness, I receive a gift.  Just last night, as I was hurrying her along, she stopped to look at a plant in a neighbour’s garden.  She reached out to touch the leaves.  ’Mama, come see,’ she said.  ’These are so soft.’

And they were.  A detail in a moment that I would have missed in my busy day.  Thank you, Phoebe.

Speaking of details and time…isn’t this little one gorgeous? He decided to arrive 6 weeks early and was 11 weeks when I had the chance to photograph him.