This post is second in the series of our conversation with Aparna Nayak, mom to a teenage daughter with special needs . If you missed the first part, please read it here.

Continuing with our questions in this second part of the interview:

How do you help yourself stay strong?

Well, that’s a difficult one to answer. I am a human too. Sometimes like all others I too have breakdowns. I too have my mood swings and panic attacks but otherwise, I take inspiration from many moms and people whom I know and are having much more difficult time than me, and I say ‘If they can so can I’. But yes, it is ok to break down sometimes and let go. It is ok to ask for help. It is ok to take a break once in a while. It is ok to allow someone else to take care of your child for some time. You can’t be a one-man army.

Most of the time I am told, you are very strong, we look up to you or God gives special needs children to strong moms or people who are gifted and strong, which sometimes makes me angry. We are not born strong or we are not that gifted or blessed. It’s our child and each and every mother does go beyond the limit for her offspring. No mother in the universe would want to see her child suffer. I am sure many mothers hide their tears when they see their little one suffering as we have to put up with our ‘brave face’. Stop putting us on a pedestal. We are also humans who have emotions just like others; it’s just that we hide our tears and fears from people. Only our pillows or bathrooms or journals know what we go through day in and day out. Don’t judge us with our smiles and happy face.

After Prerna was born, I gave up most of my hobbies, painting and reading. But a few years back, I started my blogs, which connected me to various authors and I started reviewing. Last year, during lockdown I took up painting after nearly two decades and trust me it is therapeutic. I had never ever gone out without my parents/husband and kid but in first week of September I took my life’s first 2-day solo trip and trust me it rejuvenated me. I was asked “What’s the need?” But I told “I just need to be with me”. Trust me take up a hobby, listen to music, join a dance class or gym, do what you want to just de-stress and unwind. It goes a long way to maintain one’s sanity.

What would you like to tell parents in the same boat?

First of all, ACCEPTANCE (as I mentioned in previous question); trust me it goes a long way. Once you accept your child’s condition it clears your mind and allows you to receive and process information easily. Secondly, it is ok to ask for help, to coordinate and delegate things. Don’t take every blame and responsibility on yourself. Take a vacation once in a while for yourself, take a breather, it is necessary for you to function properly and take care of your child, and DON’T, I mean DON’T FEEL GUILTY ABOUT IT. If you don’t function properly, then how you are going to take care of your child and house. So take a few minutes out only for yourself, to gather your thoughts, and calm yourself and then straighten your back and take on the day ahead. Meet moms of other kids, form a bond, share with them your problems, your success because you never know what might help you and them too.

How do you deal with unsolicited advice by those around you?

Ha, haha…. What can I say? Sometimes, if I am in a good mood, I just nod my head while switching off my brains and ears and giving them an impression that I am grateful for their advice. But on days when I am really in a bad mood, I just walk away from that person. That is very rare though as most of the time I opt for the former reaction even if I am in a bad mood. My advice, just smile. Because they are ignorant and believe me they won’t last even for one hour in our shoes.

Your voice: Tell us whatever you feel like sharing

Well, there is a lot but all I want to say is don’t trust anything and anyone blindly. THERE IS NOTHING CALLED MIRACLE CURE FOR OUR KIDS. Do your research and trust your gut. Once a very senior doctor told me, “Though we are doctors and we are looked upon for advice but I feel you moms are the best to decide what’s good for your child. All we can do is guide you but the final decision has to be yours as you spend most of the day with your child and you know what’s best for them.”

So I would say trust your gut instinct. Don’t fall prey to miraculous recovery and costly treatments which promise your child will be completely fine. Do what you feel is best but don’t ignore yourself. If your health is affected, remember no one might take care of you and your child. And most importantly – don’t blame yourself for what has happened and also if you are unable to achieve most of it. Most doctors (sadly) stress giving importance to the child and their schedule and therapies and all but they don’t tell us we have to take care of ourselves too. I made the mistake of making Prerna the topmost priority while neglecting myself due to which my health has got affected and now I am suffering from back issues and spondylitis and other ailments related to it like migraine and whatnot. Sometimes the pain is so bad that changing or feeding Prerna her meals itself seems to be a herculean task. On some days even getting up from bed seems to be a chore but then our children are hungry and so are we. So my advice, pay attention to your health, to your posture, ask your therapist about the right way to hold, lift your child. Make sure you don’t strain your back and shoulder. Along with your child concentrate on strengthening your body too.

Also, always take the second opinion.  If need be, go for a third opinion as well, especially when it is regarding a major surgery or anything regarding your child’s benefit. And go ahead only if you feel it is right and not because the doctor has said it. They are also humans and not God. Even Gods have committed mistakes so think, don’t take hasty decisions and most importantly there is no miracle cure for our kids.     

Tell us something about Aparna before marriage and childbirth?

Sigh! Aparna before marriage was an innocent, gullible young girl with a dream of a perfect marriage, perfect husband, perfect kids, and nothing else. After Prerna was born life took a 180-degree turn. I learned to do multitasking, managing the house, Prerna’s schedule, and many other things single-handedly. I used to be dependent on my father for everything before marriage and on my husband after marriage but Prerna’s birth taught me to be self-reliant and be strong. After all what I have gone through in past two decades, I want to do something for parents and children with special needs. I want to create awareness and do something which will make sure they receive help in time and are not misled by anyone.  

How has your life changed now?

Life has changed a lot. In a way, for good, I must say. Being a mother to a special child teaches us a lot. It shows the real facet of people and society. It tests our limits and potential. We discover our hidden strengths of which we are ignorant. I started blogging and writing book reviews a few years back. I have started a home business of baking healthy and sugar-free cakes, cookies, and stuff in 2015. I have published my first e-book Yours Truly in 2019. Recently in lockdown, I rekindled my love for art and creativity and picked up paints and brushes after nearly two decades. I have started doing mandala art therapy for myself. Work is going on for my second book which is based on my life experiences as a mother. I regained my self-confidence which was shattered by gas lighting by some family members and blaming me for being responsible for Prerna’s conditions. Yes, slowly trying to live life to the fullest taking a day as it comes. I used to keep asking “Why me?” but now I don’t. Instead, I offer my gratitude that God has made me what I am today due to Prerna. I have learnt many lessons. Only regret (sometimes) is if I had that knowledge and capacity initially, things would have been bit different perhaps. Maybe! But as of now taking it as it comes with a smile.   

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