What is self care for you -Today it was my turn to take a break

 written ton 4/28

It has been a tough month for many of us. Last year we went through the Corona wave here in the USA. It felt like an eternity and we all had a hard time but when I look back it wasn’t at all bad. At the time our families in India were worried about us. Most of us here didn’t have to worry about food, medical supplies and day  to day living. We had clean air to breathe and space to walk. We could see people with masks and from a distance. With social distancing and mask wearing we met friends and made our own bubble. We had the resources and  means to survive. 

This time it’s hitting the other side of the world with much more intensity and things are going downhill very fast, like a super fast train without break hurtling towards the cliff with everyone holding on tight with what ever they have.

 I used to cringe when heard about weddings, celebrations, get togethers , festivals and election rallies. People were just not taking it seriously in India. Here we are,  so far unaware of the full scale of the self harm. Every morning we wake up and read a message or 2 about some new case or a death in the families we know and care about . It’s like there is no end in sight. I have stopped counting the sickness and deaths of near and dear ones now.

 We are all fighting our own demons . Every text message or phone call is scary. I haven’t been sleeping well for  the past few days, so decided to break the routine and spend a day doing something different. I dragged two of my long time friends with me. All of us are in the same boat, worrying about parents, thinking about families. It was my mental health day and the Tulip Farm in Exeter, Rhode Island was a perfect escape with perfect company. 

Acres and acres of colors, happy and smiling. There were a lot of young kids running around,  being chased by parents and grandparents. It was a sight for my wounded soul. We were there for almost two hours and the 3 of us picked flowers, giggled, laughed, thought of famines back home and talked about them. We managed to do video calls with parents to brighten their day just a little bit with this profusion of colors and the carpet of flowers. We sat in the middle of the field  and wondered  about what’s coming next.  

Some days are just hard but it’s like waiting for the storm to clear. I did what I am good at. Wore a saree and forgot my pain and tried to be there in the moment. Took tons of pictures of many families. I didn’t want to take anyone’s picture on my phone but asked an elderly couple if I could. She was very happy to hear that I was going to use it for my review and blog. When I asked her husband to hold her closer, the blush on their faces was something I would like to remember always. Love and hope - that conquers all.

 My fav pic of the day. They were so cute together. I would so want to go for Tulip Picking in my 70s too :) Happy and alive. the way they were.

Please read my review on Wicked Tulip Farm  

Review - Wicked Tulip Farm, Exeter RI - Must visit - A day for my bollywood dreamjayapandey.blogspot.com

And It's a wrap - Big 50 and my gratitude posts - 50 of them - Thank you to each one of you.

Today marks the end of “50 days of gratitude” journey. I am thankful beyond words. I started this on March 1st. The big 50 month. COVID changed what celebration really means and also what should we even celebrate. I was looking forward to it in a way but have never been a big party, surprise or big gift person. I always believed in “small happiness”. I know how fortunate I am and I needed to document it. Hence the Birthday month gratitude counting. It was an impulsive decision directed by emotion and hunch as most of mine are driven by. 

I would like to thank each one of you for reading, commenting and messaging. All those direct messages and calls about these posts are heart warming. Many of you said you could relate to them and promised to start a gratitude journal. I am looking forward to reading yours.

I am grateful beyond means for all of you who came into my life and trust me - I learnt something from each of you. Every relationship I built, nurtured, formed, initiated and moved on taught me some very valuable lessons. In all these posts I reveal myself to be strong yet weak and delicate, stubborn and but gullible too, happy and sad, fresh, chirpy and sometimes a grumpy woman - these 50 posts are exactly who I am.

My day started with a beautiful sunrise, a walk and then a fabulous breakfast by the chef of the house. Then came a call from a mother explaining her situation in the temple. She is trying to find a balance for where and when to advocate for her son. Today in our conversation I hope I inspired her to choose to stand beside her son and not hesitate to do so, be his strength and not consider “what will people think” , to accept who he is. 

Today marks my parents 53rd wedding anniversary. What a day to celebrate many things in life. A zoom call with just the immediate family was amazing. I wish I could take  all “15” of us in a frame. They really are something, with so much going on all around, my mother’s smile has the power to calm things down around us. Plus she really is the lowest maintaince person I know , happy daughters is all she wants and yes a beautiful cotton saree from my sister and a lot of jasmine flowers from another sister’s garden on her hair helped too.

Anand made an attempt to do his final project and that is the biggest takeaway for today. The resistance to complete it has been going on for days and his mood was really fluctuating because of this stress. I wish I could help. I am thankful to Dr Aspel ( Anand’s therapist)  and dear dad for this progress.

This evening Mr Pandey agreed to go for a walk. A trail I have been meaning to go on for years and I wonder why I didn’t do it before. A 2 mile walk with the man really was wonderful. I am looking forward to having a few more of these opportunities. People who don’t know, he is not much of a “walker.”

As I type this I can hear Anand talking to his dad about his project, smell the freshly made meatballs in the kitchen and look out to a beautiful evening from my window. I am going to miss writing my gratitude posts every night but will cherish the memories.  I want to thank each one of you for being part of my journey.

 

A joot cotton saree, one of my fav, for the family zoom call 

Some day we won't need to hire advocates for our children, we will be enough

This evening I was trying to get ready and my phone buzzed -

 “Do you personally think that we, as the parent of special need children definitely needs to hire an advocate for our children's progress? I think as a mom of special Need child we should need to know how to handle your child and how to talk professionally in the IEP meetings But it's not always easy at least for me :(  "

It was an important day.  I was joining a board and also appointed their treasurer. Somehow the evening was tiring and emotionally draining. I blamed the vaccine for it but it’s been more than 48 hours. I think some day I will face my own fears and deal with it head on. I was having a hard day myself. Trying to figure out whats next for Anand and also how to let go and not get stuck with the past.

 I was taking out a saree for the evening and that text message flashed. A mom from Desi Moms Network was having a rough day. I so wish I could just pick up the phone and call her or give her a hug. I know how the day of IEP meeting goes for every Special Need parent. 

Her questions made me think. Here I was joining the board of an organization that works on grassroots level to support special need families in various ways. But is it enough? Where do we need to start for support, training and political changes ? How can we make it better? What do we need to do so a mother doesn’t wonder if we cannot do better without an advocate present at an IEP meeting? “I feel frustrated” that’s what is still stuck with me.

I will write about it more later, today I want to thank Mass Families for making me one of them. I look forward to learning and working and hopefully one day I can answer another mom - “No, we don’t need advocates for our children, we are enough,  we know what is best for them and we will get there.”

The advocate is an Educational Consultant who provides guidance to the families in regards to getting the right services for their child in school. 

 A bengal cotton came out of closet to mark this day. I have decided to be as Desi I could be for all the meetings. Its time to flaunt who I am :) a hard core desi mom 

I just found this pic today. A surprise baby shower ( Anand) hosted by a dear friend. Not sure what Ajey and I were talking. Might be what kind of car his brother would like?

My adopted parents - Wish you have one of those in your life too

  Written on 4/9

Anand was a year old and one evening that fall he rushed to Ashish and spilled tea all over himself . We put him in the tub, took his shirt off and the skin came off from his cheeks and chest. One of the most terrifying days of my life. We rushed to the hospital and after some dressing he was sent back home. Ashish went back to work on Monday and I was home with the boys. Ajey was in preschool at that time. I don’t remember many details of those days. I just remember how a relationship I formed with a couple helped me get through those difficult days.

We lived in Windsor Gardens in Norwood, a huge apartment complex with 100s of apartments , full of Indians. All the visiting parents would walk and hangout together. That summer a mom came to visit her son who lived downstairs in our building. I would see her walking with another set of parents often. One day I was in the local grocery store and I saw them shopping. I insisted they shouldn’t walk back home with the stuff and that I would drop them. That was our first introduction. Today he reminded me of this incident citing how stubborn I was in the store that they had no choice but to come with me, were not walking with the stuff. Their daughter was busy with her double masters who lived in the adjoining building. I really liked them and they took me in as another daughter and I did take care of them as my own. I remember I took them everywhere I went.

When Anand got burnt they took the job of caring grandparents. They would come every afternoon so I could leave Anand napping and go for a shower. I am sure I must have cooked for them some time but all I remember is how they nurtured my soul in those days. It’s been almost 20 yrs and I am still their adopted daughter. They come to USA frequently to visit their daughter and we get to meet. Our relationship is mutual and simple. We adore each other, WhatsApp once in a while and meet when they are here. They bring calm to my fast paced and loud life.

Today I went to visit them. After a not so happy week with Anand I so needed their love and I felt really helpless at not being able to hug them. I think Aai(mother) is the only person I cried in front of a few years ago about Anand’s diagnosis. She didn’t say a word just ran her fingers through my hair. I think that was the only time I cried on someone’s shoulder for our shattered dreams.
I spent very little time with them today but it was just enough to nurture my soul. My Sangali wale Aai - Baba ( They are from Sangali) 

Once I was in Bangalore and Baba called - my dad took the call and asked who he was , and Baba said - Jaya's Sangali wala baba and My dad responded I am his Balaghat wala papa :) I so wish they all could meet.

Aai baba and their Samdhan 

 

 

Time to change many things in our society - racial injustice is just one from the list

This year has been different in  many ways but it  was not only the pandemic or ignoring the science from the top level to the bottom. Racism has always been part of the culture and it has always been covered under politeness and sophistication. In the past few years it has become apparent that leaders can bring the best out of you and the worst as well. We have seen plenty of stupidity, ignorance, extremism and racial injustice. One incident brought that front and center. But it is not new though, ask any immigrant or person of color and you will know they have been living with this all their life. The underline biases are so ingrained in our thought process that we cannot call it racism. “This is how it is. ” 

The younger generation took charge and I think that was the main reason our society is taking it seriously and working towards some kind of reform. We all need to do our share. We need to speak up, let the person know it is not acceptable and everyone has to respect each other. The biases and jokes cannot be part of the conversation, period.

Diversity and acceptance should be the way of life, but to make it “normal” we need to feel comfortable in our own skin. I was talking to a CEO of a non profit.  I hope something good comes out of that conversation. I decided I will honor my “Indianness” and culture, so wore a blue saree. Someone commented that I am normalizing wearing saree in Boston. That remark has stuck with me. I love wearing sarees, it makes me feel confident and strong. If someone wants to judge me based on it then they don’t deserve any place in my life. During the conversation I got to know they have had only one person of Indian origin on their board’s 25 plus years of history. Time to change that may be.. 

A simple south cotton, I couldnt have thought of wearing this blouse with it few years ago.. The 100Sareepact changed my mindset about "matching" I don't worry about that anymore. We don't need to "match" or fit in, Its okay to stand out.

These kids deserve a better world and all of us owe that to them.. time to work hard-er - One day at a time, one issue, one cause - thats call progress.

They are Moms, wives, friends and Doctors - and human too

 Desi Moms Network was born with an agenda - be the friend, have a friend. Build your village and your child’s too.

I am brining them together, what they do from there is their call. I can just initiate but opening their heart and world to someone is their choice. I have seen the growth in friendship and in a person too. It’s very heartwarming to see people smiling, laughing and talking happily when together.

March had been a busy month, I added so many new moms and started the global Desi Moms Network. 

I posted on “Autism Moms of MA” on March 4th about my group and two of the moms responded. They both are doctors. As I write this, I cannot believe that I have known them for only a month . One of them lives far away from the rest of us here . She in a way nudged me to think differently about health care professionals. It’s a very soul satisfying feeling when you know they are opening their heart and soul to you without knowing you or having ever met you. In our conversation I could sense how lonely she felt, how alone she was.

Last week I decided to make a sub group of Desi Moms Network ( March 25th) - All the healthcare Professionals . I couldn’t believe the group grew overnight. There are 17 members in that group. If you remove yours truly still there are 16 who are doctors, Dentists, a Nurse and a mental health provider. I was shocked. These moms were more excited than I could imagine. One of them offered to host and before we knew it a date was set for a get together. Not even 10 days and the group met this Sunday. 9 out of 16 made time, left family behind and drove to Needham to meet others who are in the same shoes. 

I sat there listening to their stories and struggles , watching them in awe and thinking how amazing they were. I could see the vulnerable moms as well as concerned doctors in them too. Their struggle during COVID time is real and scarier than you and I can even imagine. Coming back home from the hospital knowing very well how dangerous the virus is, seeing people die, seeing their colleagues falling sick. Not being able to hug their kids and spouses and living with the anxiety of the unknown. Many of them are married to doctors too so their household is in double jeopardy. Even seeing them together, discussing their life circumstances, their work experiences and connecting with each other was one of the most gratifying experience of my life.

These 9 had never met before, didn’t know each other. I was the only connection they had but after two hours all of them went home with smiles on their faces , warmth in their hearts and a promise to meet again and soon. The thank you messages are overwhelming. If you have health care professionals in your circle, please be kind to them, be there for them and help them in any way you can. Their journey is a lot harder than you and I will ever know.💙

Give us a chance - the video "This is Us" please watch

 When I started building this Moms Community I had a very clear vision. Every Mom with a special needs child should have friends who get her, understand her and support her. Regardless of their education, status, qualification and socio economic status - here they should be partners. I knew the final product and was tweaking the process as every family is different. It’s not that I was doing something unique, there were and are so many support groups but my approach was totally different. I wanted the child and disability later - Mom as a person first. Every support group I went to the introduction always started with the kids. 

Having said that I knew we are not what we are without our kids. So I was very clear on that front too, that it was not just a regular girl friends group either. The most difficult task is explaining that to someone who doesn’t even know you. The first phone call I make I have to stop the mothers and remind them that this call is all about them not the child. 

So many have said to me that they have forgotten who they are as a person, their individuality. They don’t even remember what they would do for themselves, what is their favorite activity. Soon they understand what I am trying to do, my gentle nudges get them back on track if needed. 

When they come together at the first dinner, meet, picnic or zoom call they realize how important it is to be a “person ” for that time. They connect as individuals not “as a mom with a special needs kid” and then friendship blossoms. 

On April 2nd we released a video, a snap shot of our lives collectively. A mom envisioned, many came forward to help  and another one spent hours and made the video.

My morning of Autism Awareness Day was spent with people across the world but my evening was just for these moms. We all joined the zoom call and watch the video - for those 13 minutes, we totally forgot who we were. I can guarantee you that you will forget too.

The message is simple - give us a chance, invest in us, make us a part of your life and be there for us.  Please watch this video and let us know - "This is Us"

 

You Tube link -https://www.youtube.com/watch?v=j5FbXOFvTbw

A two saree day - another blue - Its so Amma style saree, simple and light 

Be there, speak up and be heard - sometime that is enough to start a change -

An evening with Mass families April5th, 2021

Mondays are tough and Anand was on defiant mood so it was even harder. It is a thing to witness how one person can rule the house. All 3 of us are so helpless when he is in this mood. In the morning I got to know that Anand didn’t get into the program we had applied to for next year. I just felt exhausted and spent. Somehow we got through the day but it was so draining. Anand finally calmed down. By the time the evening rolled around I was totally done but I couldn’t just sit and watch TV. I needed to refresh and feel powerful enough to be heard. An important call was on my calendar last night.

Mass families is an organization empowering parents and encouraging them to be a part of bringing positive changes. Last night was one of those nights when families were talking to  Members of the Massachusetts Black and Latino Legislative Caucus (MBLLC), a group of State Senators and representatives. 

To restore myself I did what I am good at, reaching out. 3 dear friends could read what was behind my text, the responses in form of texts and calls were magical. I am smiling typing this how well they know me. One said -“Shower, a beautiful saree, a flower in your hair and a favorite glass of wine” and I exactly did that sans the wine. Coincidently the flower was from her garden. Isn’t it amazing when you don’t have to find a solution, someone has it already laid out for you. You just need to implement it. 

The call was a success, the families talked about their life but for a change I didn’t. I talked about “Desi Moms Network” and the life of an immigrant, as a brown woman in general. How important access to information and support is, how important it is to feel supported and heard. There were 9 more Desi (Indian) families present from our Desi Moms Network. I am so proud of them for being there for me and show how powerful the representation is.

When the call started I wished I had written something but later I was happy that I did not have a script. I might have been all over the place  

but I was loud enough and felt impactful, that’s what everyone said but the biggest testimony came from the author of the bill. - “I did not even know how much I needed your remarks tonight until I heard you deliver them, Thank you so, so, so much” 

Last night I went to bed in a much better place. Sometimes it is enough just to be there and speak and someone will listen. Change will not come over night but one step at time and that is what we need to focus on. 

A beautiful Ikat from Ally Matthan, Co-founder of 100SareePact, Blue and Red and Ikat - what not to love. It is becoming my togo saree, a simple cotton, beautiful and soft drape.

Autism Awareness day April 2, 2021 - Tell me you are there for us

Written on 4/2

Pandemic became the reason our world fell apart but again it brought the whole world closer too.

I woke up with my walls and WhatsApp filled with “wear blue for April 2nd” pictures. 

I have been working on raising Autism awareness for years but 2015 changed my life and course of action. I wore a Saree  on April 2nd, 2015 and felt so liberated after writing my first Autism Story on Facebook . Since then the #100SareePact-ers have been my biggest strength.

Soon after, my sarees became my voice here in United States and my blue sarees became the identity of my Autism Awareness and acceptance journey.

This year was busier than ever, with a very active social media due to the Pandemic, Desi Moms Network and overall support for our children and it has been a busy week.

My day started early as I was part of an Instagram Live event . Punarjeevana’s Dr. Hemalata Jain had very interesting questions about my 3 loves. Please watch when you get time. Saree, Music and Autism Awareness - 3 things I talked about and wondered how News Anchors seem so put together at that early hour. 7 AM in the morning, I did look put together with saree on but I know what was going on behind the scene.

Soon after it was time for a group zoom call and another facebook live event for a conversation with experts and parents for a different Saree group I am a part of. I had exactly  5 minutes for a break before it started at 7.30 AM  and before I knew it, it was 9.30 AM :). I finally managed to get a picture after everything was done.

My phone was buzzing with pictures from family and friends. It was a day to “wear blue to show you care” and

I am grateful to everyone who supported us however they could. Blue or no blue I know you have my back.

With all that was going on I still managed to connect two more moms today and just like that they went from 0 to 200+ plus friends. Small steps in creating a better world for everyone.

Please be kind and support those who need your compassion and empathy.

I still have to go through messages , Texts and emails. Please know my heart is full of gratitude. #DesiMomsNetwork #momlovesanand  

The link for my Insta chat - spend 20 mins to know more about Jaya :) 

https://www.instagram.com/tv/CNKW0GHpjiG