Hope. Despair. Love. Anguish. Helplessness. A Slice of our Lives.

The monitor lit up and started beeping frantically. His heart rate spiked erratically and oxygen levels dipped and rose. He cried in pain, half unconscious. The slightest sound startled him. I sat beside him helpless, not knowing how to help my baby. With all the tubes in him, I was afraid to even touch his hand. Tears streamed down my face, uncontrolled. I just hoped that the nurse standing beside me, equally helpless, could not see my tears. But I am sure this was not first time she saw a grief stricken mother crying beside her baby.

This was one year ago. Anvay had just had a major surgery.

So why write about it now, one year later – you may wonder. Because you see, ever since the month of November started, more and more, I found my mind wandering back a year ago. On 6th November, I booked our tickets back to Almaty, on 7th we took Anvay to his physiotherapist – hoping she will suggest a walking aid for him. By 9th we were wondering what hit us as we found ourselves running to pediatric orthopedic surgeons, who suggested a hip surgery for him. The memories cloud my mind and unless I write they will continue to torment me.

I also write in the hope that this post finds its way to those parents, who, like me are dealing with a similar situation, and tell them they are not alone in this. That this too shall pass. I wouldn’t have believed it a year ago, but now, one year later, I can say so with more confidence.

How it began…

The pandemic created ripples much beyond the disease itself and there were many unintended consequences – health and beyond. All medical services other than emergency came to a halt. Long-term care for chronic conditions, rehabilitation, and palliative end-of-life care, was badly disrupted – severely affecting older people and people living with disabilities. Anvay’s therapy sessions also stopped abruptly.

Just a few months before the pandemic swept the country, he had started to creep (a little bit like a mermaid creeping on ground – i.e. both his legs were close together and moved like a single limb). This is because his leg muscles were very tight and he couldn’t open his legs. But it did give us hope that he might stand or even walk by the time he turned four. However, no one had expected that 2020 will go without any therapy.

Getting by….

We did what we could at home. My mum and his nanny would do play therapy with him with lights and sound. During my breaks from work I would help him practice sitting. In the evenings, we made him stand in his standing frame and his nanny took him out in the corridor. We also tried online therapy sessions but were not very successful at that.

However, we could see that he really wanted to stand. Every time I made him sit and held his hands – he would try and get up. But his leg muscles were too tight, resulting in his knees almost knocking against each other (scissoring), which affected his balance and his ability to stand straight. In August, when clinics opened, we visited his neurologist and asked if he could recommend any muscle relaxants. He thought otherwise. We came back home.

Sometime in October, for the first time, he lifted his legs to take a step. It might sound like nothing, but for us it was huge! The simple movement of bending a knee, lifting the leg and moving it forward to take a step – was a big achievement for him since his tightened muscles didn’t allow much movement. We all cheered with joy!

An unexpected setback…

We had celebrated too soon.

By the time November rolled in, international flights had started to open up, which meant I could finally get back to Almaty, Kazakhstan (which is where I am based). I booked my tickets for end November.

Before I left, I needed to get Anvay evaluated. I thought that he was ready to move from the standing frame to a walker that could help him walk. His therapist was happy to see him creep and also noticed his improved cognition but was very concerned about his stiff leg muscles. His hips were too tight, and she recommended we consult an orthopedic surgeon. We did. Two of them. Both recommended immediate surgery as his hips had started to dislocate.

But how? Would you like to understand? Stand straight, with legs close together and start tensing your muscles inwards, cross your legs like scissors and hold tight. Soon enough you will begin to feel pressure on your hips. That pressure, day in and day out was pushing his hips out of their sockets. So much so that they were about to get dislocated.

Scissoring gait. Flexed knees due to contracted gastrocnemius. Adducted legs due to contracted adductor muscles. Ankle equinus bringing foot plantigrade. Adapted from (HSP Research Foundation).
Scissoring (https://www.flintrehab.com/scissoring-gait-cerebral-palsy/)

Once more our world had turned upside down.

The ordeal begins…

I am a little bit stupid (maybe quite a bit). My coping mechanism diminishes and normalizes any negative event – “surgery, oh yes, that’s okay, it’s quite a routine thing”. “Doctors even said that patients travel back within a few days of the surgery, so how bad can it be”. And so on and so forth…till one starts to believe their own brave façade.

But the problem with normalizing is that while it keeps you from freaking out waiting for the event, when it actually happens, you are totally unprepared for it. Its like a ton of bricks falls on you.

We checked in at the hospital the night before the surgery, after the RT-PCR and HIV tests came negative. I slept with him in the hospital bed at night. Unaware of what he was in for, he cuddled in with me and slept. In the morning, as the nurses prepped him and started to take him away, he looked frightened, uncertain. The shadow of fear that passed his face made my heart go cold.

That’s when reality hit me.

I was sending my baby into the unknown. Alone.

When they brought him back, we were told that he needed another surgery in two weeks. 10th December.

The next few days were pure hell. His pain. His fear. The slightest sounds awoke him, made him cry. Doctors and nurses constantly in and out. Multiple attempts at inserting and reinserting his cannula. Blood splatters on the sheet. Blood tests. His pitiful cries. His favourite nursery rhymes played in a loop to make him smile. So much so that I can’t hear any of them now without a feeling of dread creeping over me.

It seemed I could do nothing to ease his misery. I couldn’t even explain to him what was happening. Why was he in pain. Why was he not at home. The wretched helplessness I felt is difficult to describe. It felt like I betrayed him – brought him here to be butchered. And we had to do it again. Two weeks later.

The thought of making him go through this again was so agonizing that I harbored thoughts of skipping the second surgery altogether. But the family talked some sense into me.

The next few months went by in a blur. His legs were plastered at an almost 180 degree angle and he had to be laid on pillows and turned every few hours including at night. My mum, Kapil and I took turns sleeping with him so that every third day, one person could sleep a full whole night. Diapering was tough because he was covered in plaster and we had to ensure the cast didn’t get wet – it took a while to figure that one out. We had to be careful of bed sores – he did end up getting one at the beginning but then we learnt. His pain took months to go away – I was afraid to even move him because it hurt. His pain took months to go away. A while after I left for Almaty.

Should I hope….? For what..?

The pandemic and the surgery put his physical progress back by two years. This whole year he has been in a brace which has restricted his movement. But slowly he is getting back to pre-surgery levels. It was a delight to see him start creeping again. And pure pleasure to see him chirp away.

But I feel despondent at times. He has lost two critical years of therapy and movement. I had really hoped he would walk by four and then that he will walk by 5. But that’s still a dream. He turns five next week. He is yet to sit completely unassisted.

One might wonder why I seem so obsessed with his standing. You see, this is one of the hopes I am still clutching on to. When we received the diagnosis – more than four years ago, the doctors never really gave us a sense of the extent of his brain damage. Their only response from doctors when we asked if he would become ‘normal’ was that it is difficult to say anything for sure. Every brain responds in a different way. So yes, he may walk and talk and go to school, but on the other hand he may not. Only now I realise that his brain must have been damaged quite extensively.

I hoped that with therapy he will overcome his challenges. But four years down the line, I doubt very much that he will go to school. Or walk. Or talk. The only hope I now have is that he does not remain physically dependent at least – that he can walk and take care of himself physically.

Sometimes I want to stop hoping. At others I wish and hope with all my heart. And often I wonder if we are doing everything we can for him. I guess I will never know.

They say love is powerful. His mother’s love saved Harry Potter from certain death. I wish my love could have taken some of Anvay problems away. But my love, limitless as it might be, seems to be totally ineffective. If this were a fairy tale, I would have wrapped him in my love and he would have healed. If wishes were horses….

If this feels like a hopeless post, I am sorry. I am sure the picture is not as bleak as I paint. Some days feel dark and others are brighter.

This is the Thanksgiving weekend. So, let me not lose hope and remember that there is always something to be thankful for. His brilliant smile lights up our lives. His hugs so tight that they can squeeze out all negative thoughts. The purity of his love permeates us, spreading its warmth through each pore.

And I am thankful to you – to you who reads my blogs, because that encourages me to write and share my thoughts, my lows and highs with you. Thank you.

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50 comments

  1. Sakshi, you are very brave and an inspiration. Please keep up your hope and your love will nurture your child for much better life. His smile is so lovely. He will be innocent and free of any trash that most of us are afflicted with. And have better life than most of us live with all our faculties intact.

    • Thank you. And you are absolutely right about his innocence. The purity of his love and emotions is evidence of that.

  2. This is so powerful, Sakshi. And such a remarkable lesson of life from you and especially your little one. Wish you all the strength to keep going, and may your Muggle-born powers continue to protect him and keep him safe.

  3. Sakshi, a heartbreaking post. Praying hard for Anvay and hoping for more successes than failures this year.

  4. Sakshi, I have no words. Just sending you and that little boy a big virtual hug. I will continue to raise both of you in prayers.

  5. It hurt my heart to read this, but also made me feel incredible love and admiration. None of this is easy, but there is an intimacy in struggle and hardship that brings us a depth of feeling we rarely experience and a shared experience that is unique and often unfelt. Beautiful writing from an amazing woman, mother and professional. I am, and will continue to be, in admiration.

  6. You really are a supermom Sakshi. Amazing saga of grit & hope and more power to you and there will always be better days. Hang in there. All the best.

  7. Sakshi, thank you very much for sharing. I think people need to know what the children with special needs and their parents are going through. You are an amazing person. Wishing all the best to your son and your family.

  8. Sakshi, to say that you are brave and strong is to underplay what you and the family are living. I, for one, have had the “why” question in a similar situation, and my father said “because God trusted us to take care of him”. Coming from a not-so religious person, it was a surprise. I believe him. Your love for him will take him far. You both are in my prayers always

  9. Speechless and touched by this , your every single word oozes love for your child .God bless you abundantly with all the strength and love is rare sight

  10. Hey ! It’s so so touching to see so much love n care ! Very well can feel your pain! Magic does happen sometimes ! You never know ! Your love for hims hall definitely pay , that’s all I pray ! Lots of love 💗

  11. Your son is so beautiful, his smile is priceless and so are you ! Your love, your courage is so inspiring ! I pray to almighty that all your hopes and wishes come true.

  12. You post is full of love and hope. It’s raw and searing with emotion. I wish you strength and lots of joy in the coming new year, dear friend!

  13. Lot of love and prayers for Anvay and your family. During the pandemic , people with special needs suffered a lot , it was a really tough time for you and your family. I am happy that Anvay came out of his surgery with courage . These stories need to be shared , so others can understand the issues and possible solutions when caring for a child with special needs. Keep writing , you are doing a great job of not just writing but being a great MOM !

  14. Sakshi, I was literally crying while reading your post. As a mother, I felt as if it was happening with me. I can hear you. You know God give us gifts in the form of problems and its rewards in the form of lessons. I can completely understand how desperately you all must be waiting for Anvay to stand on his feet. And it will happen. I have full faith in God, Anvay’s willpower and yours as well.

  15. I had tear in my eyes while reading this. being a mother, I could understand how hard it must be for you to deal with this. but you are a brave woman and I loved the way you keep your spirit high. I wish and pray that things change for better in future.

  16. In love with his smile.you are an example of how strong women can be when situation wants her to be.god bless you and Little cutie pie.much much love n blessingsto him

  17. Oh Sakshi after reading this post I want to say that I am proud to know such an inspirational mom. Thank you for being so bold and positive minded and give my love to him.

  18. You are a brave mother of a brave son. The ordeal that you have been through is really heart renching, and words of consolation and hope are sure to ring hollow. But hope and courage are sure to trigger the sparks of light at the end of the tunnel. Anvay’s smile is there to light up your way.

  19. I am not a doctor, so I can’t advice or suggest some therapy but as a mother I understand what you must be going through and the feeling of despair is normal. The only thing I can say is each time you feel like you might be depressed or negative, take a look at his smiling photos that you have added at the end. That smile and cheer is because of you.

  20. Sakshi, I was crying while reading your post, I have read your post earlier also. I can hear what you’re saying. I know you are a brave woman, and I admire how you keep your spirits up. I hope and pray that things will improve in the future.

  21. Sakshi, I remember when you mentioned about hip surgery in our group and we all supported you. It is your strength and beaming positivity that makes him cope up with all the medical procedures. I know you are strong and will take up all challenges with sense of hope.

  22. You are definitely a strong woman that everyone look up to. It’s not easy but you have already proved to be a rock solid strength and believe me Anvay will be alright. He is God’s gift and God will take care. Lot of strength and love to you.

  23. You are so strong dear, so is your little one. Its difficult to see your child in pain but whatever we do, we do for their best. I m so happy to know that he is making a progess and i wish n pray that by same time next year, you will be posting about, how difficult it is to run behind little ones.

  24. i can only wish you and your little one all the best and hopefully he’ll be able to do well in the future. Know that you’re such an incredible mother and all the other people who take care of him as well. He sure is a lucky child to have all of you supporting him.

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