One day as I was browsing through my Instagram feed I came across a “Live” that was being promoted by many bloggers in their stories. When I checked to see what the discussion was about, I couldn’t help but admire the lady being interviewed. This was Sonam Patel and in the live she was describing her motherhood story and her experiences in raising her son who had been affected by Rubella.
What I love about Sonam is that she documents her battle with Rubella on a regular basis through her Instagram account. Her challenges, disappointments, worries and celebrations are read by many. Little does she realize that with her journals she is not only sharing her life but is also making the world around her, a little more sensitive and a lot more informed. Read this interview to know her story and do give a shout out to let her and other special need moms know that you care.
Tell us about yourself and your family
I am basically from Bihar but I currently reside in Kolkata with my husband and my son. I freelance as an English-Hindi translator. Everyone in my family is very cooperative and they support me with every decision of mine.
How and when did you discover that your son has special needs?
I got married at the age of 21 years, while I was still pursuing my studies. Four months into my marriage I conceived and got pregnant. It was absolutely unplanned and we were not exactly ready but we decided to anyway accept our future.
My pregnancy was smooth. The routine check-ups with the doctor had all been normal. In the 8th month however, after another routine scan, we were informed that my baby’s growth had stopped. All his organs had ceased growing at different points post the 30th week. We were asked to immediately get a C-section done.
The doctor’s words seemed like a nightmare to me, in that moment. One- I could not believe what I was hearing. Everything had been normal up to this week. Two- as someone who was always afraid of needles and blood, I could not fathom the idea of going through an “operation”. Unable to accept our situation, we took another scan from another clinic. The results were unfortunately the same.
I told myself before the scheduled date for C-sec- “I will be brave, I will confidently go and yes, my baby will be brave too.” That time I had no idea that my little son was going to be a warrior!
When Rubella came into our life
The operation went smoothly and my baby though premature was fine. When I finally got to hold him on the third day, I felt as though he was in pain. He wasn’t opening his eyes at all and was very uneasy.
After some tests, the doctors confirmed that he had contracted sepsis, was extremely low on calcium and displayed symptoms of jaundice. He was immediately shifted to the NICU and was given antibiotics with no feed for the next five days.
As if this was not enough, one day while holding him close, we noticed a white spot in his eye. After some more tests and examinations the doctors informed that he had a hole in his heart and it was caused by a virus called Rubella.
Rubella or German Measles is a contagious viral infection that can cause devastating consequences for infants affected before birth. As parents, our world suddenly felt like it was tearing apart. The doctors apprised us of the developmental delays that could happen, the procedures he may have to take for his eyes, heart, brain and advised us to consistently work hard on him. “We will have to wait until later in life to understand how this would change into something normal.” he said.
How did life change after Nisham came into your life?
Nisham came into our life like a storm and it felt like we would never be at peace again. When he was discharged from the hospital after 17 days, we were all really nervous and worried about handling him on our own. He was so small and delicate. Even a small sneeze could worsen his heart condition! Somehow we gathered courage and took him home.
Life in the first few months revolved around helping Nisham gain some weight, so he could begin with the treatment advised for each of his problems. At the age of 3 months, my son went through his eye surgery for ‘bilateral cataract’. By 6 months, he started wearing glasses with a power of +20.
At 9 months he went through a heart procedure that closed his hole and only 2 months back he was operated for Inguinal hernia (not caused by Rubella though). He has fought bravely through all these events and that made us brave too. We still have to go for his heart check-up every 6 months and he will be undergoing more eye surgeries in the future.
He changed us
Since my son has developmental delays, people sometimes look at us like we are from some other planet. I remember once, one of my relatives said- “Anokha bana diya hai bache ko” (They have made the boy all strange).
We didn’t have the courage to take him out with glasses and patches, those days. It was so depressing. We never put his pictures any where to avoid all the insensitive questions. But now our son has changed us. We realize and accept the fact that we have to stand up for our son, in even the most ordinary activities.
We now take him out despite how he looks or behaves. We are so proud of him. He has inspired us and changed our perspective towards life. Earlier, I was not so positive. Now I can find positivity in every small thing. And yes, I continued my studies after he got better.
What kind of struggles does Nisham have because of his condition?
Nisham’s condition affects his eyes, ears, brain and heart. His milestones are all delayed. He profoundly looks and behaves differently from the rest of the children of his age group. He has hearing loss in his left ear. Due to hypersensitivity caused by Rubella and because of continuous consumption of antibiotics, he cannot swallow or eat properly. This is getting better with time though.
He cannot understand or comprehend his environment like other children. He goes through severe anxieties sometimes. He can’t express his feelings so he often gets cranky.
My son held his head up at 10 months with the help of physiotherapy. He started sitting up before his second birthday and started walking at 33 months. Now he is four years old but still can’t talk, so things are not easy.
We are taking special education sessions for him so that he can develop his attention span and after that, we will be starting with speech therapy. He hates his therapies but he still needs to go through them. There is a lot of crying and frustration in his daily life.
What kind of activities does Nisham enjoy?
Nisham loves water based activities. He loves watching the rain. He enjoys going for long drives. He loves to dance with me and he enjoys standing by the window to watch the outside world. He has immense love for dogs and is able to spend some time with them.
Being a parent itself can be stressful, how do you manage your emotions, when you feel overwhelmed?
There are days when I am exhausted. There are days when he doesn’t cooperate at all and I feel helpless. On such days I break down. I just cry it out and then start afresh.
Earlier when I used to see my friends getting placed while I was struggling to be a mother, I used to feel worthless. I have accomplished nothing in life- I used to think and that emptiness used to make me sad. But then I got active in a parenting community which eventually helped me get my first freelance assignment.
Nisham’s fight for survival has transformed me completely. I see him as my strength and luck. It is through him that I have a purpose in life. And now I never question- why me? Instead I stand up and start going again. That’s how strong Nishu has made me.
What specific things have you begun to enjoy about Nisham and what are you looking forward to?
Whenever I get him food, he runs away. He waits for me to come and take him along with lots of cuddles and kisses. He brings my shoes to me so that I can work-out. He has started kissing me, to be precise eating me! He can now recognize me even in the dark by just touching my face. There are so many such small heart-melting deeds that he does.
2020 was great for us in terms of his development and I’m looking forward to many more this year. I’m longing to hear him call me “mumma”. I’m keenly looking forward to his mingling with the other kids. I don’t know what achievements are on our way, but this is the first time that I’m prepared to work harder.
Most unborn babies infected with Rubella are either still-born or result in a miscarriage. Nisham passed it all and that’s the reason why I call him a blessing- a warrior. In fact all children surviving the Rubella virus are blessed and born-fighters.
What according to you is one big misconception that common people have when it comes to children with special needs?
People normally see a special needs child with inferiority or sympathy. These children are as normal as the other children. They also need love, compassion and support. Encourage them, appreciate them.
Children with special needs are capable enough. They don’t remain the same forever. They evolve in their own way and develop in areas that other children may or may not develop in. Every child is unique and comparison kills the growth of any child.
So stop the compulsion to judge and leave them alone or offer help. If you have anything to ask kindly approach the parents directly, instead of talking behind the back or staring at them. It makes them uncomfortable.
What is your advice for other parents who have children with special needs?
Never lose hope. Children learn through habits. If you introduce something new to them, they take time to get used to it. They may not show interest in the beginning but with repetition, they will get there. Your positive vibes affect the child positively. Let them explore, let them take their time. Don’t compare and don’t create unrealistic expectations. People will judge, no matter what you do but you know what is best for your child. Don’t let societal judgements discourage you. Just keep going and your child will amaze you.
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Hi! My name is Rubitah. I’m a Content Writer certified Life Coach, Counselor, Social Work professional and the Founder of Being Rubitah. Over the years through my professional and personal life, I have realized that prayers and love can do wonders to family life once you come to terms with yourself and surrender to God. Do you relate to me? Then you may like what I post here! Read more about me
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