When a friend introduced me to Nameeta's mom blog what struck me the most was her voice. It was strident, unapologetic and strong.
Nameeta is a communication designer specializing in branding and packaging design. She has her own practice called Bayo design. A mum to two absolutely delightful babies, her baby food blog is called NomNomMum which documents her babies’ journey into the world of food. She lives in Mumbai with her Singer-Composer husband Rajiv.
As I browsed through her blog, I also read about her efforts to represent and support the Cleft community in Mumbai.
I believe that the Times Of Amma community will find inspiration from Nameeta's journey and so here she is, to talk to us about the story behind, 'Cleft Strong Moms'.
How did you process the news that your baby was diagnosed with a cleft lip and potential palate involvement?
(Cleft lips are visible on the USG’s whereas identifying palate involvement depends on various factors like the skill and experience of the sonologist, position of the baby, width of the cleft lip etc.)
My husband Rajiv and I went in for my 17th week anomaly scan oblivious to the news that was waiting for us. At the appointment, the second in command sonologist was busy taking measurements of various parts of the baby’s body and every time we asked her if things looked okay she just “hmm-ed”, an awkward response now that we relay the scene in our minds in retrospect. We obviously couldn’t tell a thing on that grainy grey screen so we just kept chatting and goofing around.
Later, I was asked to move to the other screening room, which had what seemed like a higher version of the scanner with the lead sonologist. Rajiv stepped out to drop our son off to school and I started “trying” to look for signs of the baby’s gender. Just then I noticed something off when the scanner glided over the baby’s face. My heart just froze mid beat and I asked the sonologist, before she could break it to me, “Is that a Cleft?” I don’t remember her response because the answer was obvious and my ears were ringing a flat line.
I composed myself and asked again, “Doc is that a cleft?”, yes she said.
“How severe is it?”
“Seems like a wide complete.”
For some reason my questions seemed so instinctively informed that it was almost as though my soul was ready for it.
“You mean all the way to the back of her mouth?”,
“Very high probability” came her quiet reply.
I couldn’t hold back the tears rolling down my cheeks. I braced myself again and messaged my husband to come back quick to the place for I did not have the strength to walk out of there alone. My mind was now racing at a 1000 miles per hour.
“What kind of support do we need to take care of this baby?” I asked.
“I will help you figure this out” came her reassuring response.
Our drive back home was dark. I was swinging between hysterical outbursts and reassuring myself that we will find the strength to tide through this. This baby chose us to be her parents as much as we chose her to enrich our lives. From that very moment began our cleft journey as an entire family.
How did you share the diagnosis with your extended family? How did they react?
We got back home and called our folks to share the situation with them. We told them that this baby had selected us because all of us were strong enough to muster up the support and unconditional love she/he would require. Our parents were loving and positive and supported us emotionally at every step.
I wanted to tell all our inner circle of friends well in advance to allow them some reaction time for we knew there would be questions and reactions. I wanted to get it all over and done with before the baby got here. I did not want to deal with explaining the situation and getting riled up in emotions at a time when we would have to focus all our energies in being positive and loving the little soul.
I typed out a text giving them the lowdown and providing them with web links to read up on. We received a lot of love and support from all which comforted us immensely. We are truly blessed with the best family and friends support.
How did your son respond to Tara when she was born?
We involved Trilok in my pregnancy right from day one, way before we even found out about our little cleft cutie. So my boy was thrilled to be a big brother. However, when we did find out about the cleft I made it my mission to normalize physical differences. There was no way anyone in our family was going to view this new addition any differently. I started with becoming a member with various cleft associated support groups and started showing pictures of cleft affected children to Trilok and teaching him to look beyond the difference. I don’t remember him asking me even once if the babies were hurt. I made it a point to educate him. I told him it was called a cleft and that the new baby was going to have one too. We would look at hundreds of cleft babies and gawk in awe at their beauty. It got to a point where he would ask me to show him pictures of babies and praise them with the same enthusiasm every single time. I knew I had done something right when he first saw Tara at the hospital and his response was “Oh Mumma she is beautiful!” we even have a video of him singing a Marathi lullaby to her hours after her birth.
What is the most challenging aspect of parenting Tara, at the moment?
So here is the absolute truth and I kid you not.
Tara has been an ideal child. I will go even as far as saying she’s been the easier one. Sure, there have been challenges with her but in all honesty they’ve been more her challenges than ours. She has truly come out shining like a star. I also attribute her composure to my hypno birth. From the time I found out about the baby, I took up hypno birth coaching to calm my mind and connect with my baby. I knew what stress could do to my baby, so, I just wanted her to know that she was fully accepted and loved no matter what and all she had to do was trust us and show us the way in-utero. I only say that because I truly believe babies, before they make their entry into our world are spiritual and pure souls. I also believe that she is the one who guided me to all my resources and she is the one who chose her inner circle to work with and be a part of her incredible journey.
What has been the most rewarding aspect of your journey with Tara, so far?
Absolutely every single experience Rajiv and I have had with Tara has been rewarding.
She has made us better people, better parents and very compassionate human beings. She has changed our perspective on life and I forever will be grateful to her for it.
Could you tell us a little bit about the origin story behind ‘We are Cleft Strong’?
‘We are cleft strong’ is actually a small pool of resources that I have complied together in order to reach out to new expectant cleft parents, for I sure wish I had something to fall back on as reference available to me locally when we found out our news.
However, drawing from my wonderful experience with international support groups, to name a few, CLAPA, Cleft Mommies Bond of Friendship, Cleft Mom Support, my goto group Exclusively Pumping for Cleft Cuties, I started a local support group called “Cleft Strong Moms, Mumbai” open to cleft affected individuals, parents to cleft cuties and anyone who represents the community.
How has the response to Cleft Strong Moms, Mumbai been?
Cleft Strong Moms, Mumbai is a small group at the moment though it’s growing slowly in numbers. I ultimately want it to be a forum that renders positivity, support and a sense of belonging to anyone representing the community. I want it to be a place, which allows people to meet up and share stories, experiences and extend any kind of help and support required.
What is the most important piece of advice that you would give other parents of children diagnosed with cleft lip and palate?
I don’t really have any advice because we are extremely new to this ourselves. Having said that, there are a lot of long term challenges to being cleft affected which very often go beyond physical appearances. Ones, I will never know on an experiential level. What we can do though, is support our daughter through her journey to the best of our ability. Ultimately, it was the love for our unborn baby that gave us the strength to remain positive and strong.
Thank you so much for talking to the Times Of Amma, Nameeta. We wish you and your gorgeous cuties much love and happiness.
And to the Moms out there who represent the cleft community and would like to be a part of Nameeta's support group please feel free to follow Cleft Support Moms, Mumbai on FaceBook.
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