Deepa Kannan on being a mum to a child with rare health condition

Here’s an incredible story of a mum who has perhaps been subjected to numerous judgements, opinions on her choices and decisions taken in life. It has surely not made her weak but every step has made her amazingly strong. Deepa Kannan of Yogasopanam wellness is a yoga teacher-entrepreneur and a mum to a child who has a very rare health condition. Deepa is someone who is married for the second time and with Mums and stories she shares her dreams, her life and on parenting her child- Omkar.

“ It was a difficult choice in the sense that staying in a bad marriage is like a bad habit and it requires getting out of that and breaking that complacency of a situation. My family wanted me to break away for a very long time, and we’re the happiest when it happened, because at the end of the day, when your parents don’t see you happy, they just want that to change. Common friends were bothered and did cut away from me because they probably felt that I should have stayed. And there were the few friends, in fact the ones who spoke often of being “non judgement” who turned out to be the most judgmental, but that phase took me from why this to recognizing true friends and I’m happy for that.

I had a brief tryst with yoga as a school girl, but thought it was the most boring thing and then forgot all about it. But looking back, I think it taught me that I had to make yoga teaching interesting without diluting its essence.

I started yoga when I got married the first time, more as a way to pass my time, but fell in love with it instantly. Almost immediately I became a teacher and it’s been a wonderful 17 year journey.”

Talking on her son’s special health condition, Deepa shares, “ This affects one in 20,000 kids.  We found out that Omkar had a condition – Salt wasting Congenital Adrenal Hyperplasia. The body’s adrenal gland doesn’t produce cortisol and aldosterone. So kids throw out sodium and dehydrate among other complications. They can’t cope with physical or mental stress so every vomiting, fever, diarrhea, viral leads to ICU.  We came to know this condition when he was 3 weeks old and went through dehydration and adrenal crisis. He was probably very close to it being fatal.

In the beginning at the hospital, when I had too much time to think outside the NICU, I did go through everything from denial to anger. But once, we came home, and began actually living with a child who had multiple emergency situations, we learnt to become more practical rather than emotional, and began educating ourselves about the condition and managing it. There was no support group in India at that time and we read about it on websites in US and UK. We never once thought that this was yet another challenge. I was just happy that I had a child and he was so beautiful that none of that mattered except taking care of him.

I can’t speak for every rare health condition, as each one might involve a different set of challenges, but can talk on this one which is a adrenal disorder. So yes, we need to educate his school, see that there are emergency medication pouches are available at different locations, stick to correct meal times even at school based on medication times. Simultaneously it is a continual process to educate our child about what is good and what is not in something like sports, travel carefully, predict many things like an impending seizure and take necessary precautions. It really means to be one step ahead all the time. My take is that as a parent with a child who has a rare condition, avoid guilt or frustration. Look at it philosophically and educate yourself for empowerment.

There were times even when Omkar was just diagnosed and in NICU, and people would ask us how we came to work anyway, and we would say that as long as we knew he was well taken care of, one of us was there, there was no need to become upset and over emotional. They would always tell us that they didn’t know how we managed to juggle hospital and work and everything else, and this was probably due to our yoga.

We have started a support group in Bangalore, and the facebook page is called Congenital Adrenal Hyperplasia Support India. We have also created a Facebook page called Omkar’s journey with Congenital Adrenal Hyperplasia to chronicle all possible events and scenario in the life of a child with CAH, with a view to let new parents know what to expect.

We are also working on a website for this, wherein we are trying to first of all give new parents a complete source book of CAH. As a new parent, I found it very difficult with very few website providing a complete picture. Also, we are trying to add some specific information on the site, relevant to India. The website will be up in a few days. For any parent with a newly diagnosed child of a rare condition, allow yourself to go through the emotions that you feel, start to look around and educate yourself. You can also find support groups and manage it like you would manage anything else without becoming bogged down by emotions.

Every situation is unique and I don’t want to say that there is a common way to deal with it. I strongly believe in karma and that what will be will be and will go away if it is meant to at the time it is meant to go away. In the meantime, stay true to yourself. Don’t allow anyone to change your character or force you to do or not do something. Eat healthy and maintain a balance in lifestyle, as the strong connection between the health of your body and the health of your mind and the ability to cope is all linked together.

I don’t feel dejected anymore, but yes, when I feel overwhelmed or drained out, I go to my yoga space and do silent slow meditative yoga and feel myself centered and am on an even plane again.”

Mums and Stories thanks Deepa for sharing this inspiring journey with us and here’s wishing the very best to this strong family.