Third time is a charm :)

Last night was special in a way, I was excited and looking forward to chatting about a new opportunity to make a difference. A dear friend initiated this conversation, she is part of the board. They were looking for a new member, she put my name in the hat. It was somewhere in Oct 2020. and then again it started in March this year. As of now I am a first Desi on one board and two of them had one member, a dad, before me.

By this time I was already selected for two other non profit boards. I have seen the change in special-needs world. People are more aware of minorities and do want to know about other communities. Diversity is becoming a new trend.  A woman in the saree sure was a novelty few years ago but now I am expected to be in a saree. A dear friend lovingly said I normalize the saree in Boston. 

Yesterday I had to meet few board members. I had a very weird day. I was very restless and couldn’t focus on anything. It was not because of the meeting but somehow I wasn’t in my right place. After work I decided to mediate before getting ready for the call. before I knew I was asleep and woke up 30 might before the call. Rushed for the shower and took out a simple Ikat cotton. I smile writing this thinking about the panic I had. 

The conversation was awesome and I was very energized. They were kind and curious and I had a very good feeling about the whole conversation. Even with the technology glitch I encountered. The Microsoft Team decided not to support me. One of them was very kind to set the Zoom meeting right away. I was embarrassed to the core but they quickly moved on to important stuff. A very intriguing and thought provoking conversation ended with” What would I do with my position on the board”. Now you can imagine how much I must have talked :)

I went to bed being thankful for these opportunities where I can make a difference. I can still not do things for Anand, I am always behind but some other mom gets benefit from my journey that itself is motivating.

A simple cotton Orissa Ikat saree, An online implusive shopping. Grey just like my mood yesterday. 

Have a simpler and kinder weekend. Do one thing just for you. I am going to make a cup of Chai and listen to one ghazal of Jagjit Singh. . 

This flower was on my hair. I go to water my friends plant and got this one for my Thursday evening :) the amount of buds on that bush I am all taken care for another month I think

This email from an aunt explains beautifully what I want to do  ( or should be doing) with my board position. these msgs keep me going. Please let your friends and family know (who has a child with needs) they are NOT alone.

A conversation about Mental Health - Stay Tuned on "Dhai Akhar Voice" on You tube

4 fierce ladies come together to talk about various topics and before you know the 30 mins conversation turns into two hours. Busy lives get in the way and we promised to meet again. Zoom and virtual meet ups – our new life.The conversation resulted in some meaning conversation and ideas. Stay tuned.

One Sunday afternoon we met to record something about mental health. Cannot wait to bring that to you soon. Stay tuned. During my research the statistics were eye opener. We knew things were not so good but the data makes it real.

I used various resources including KFF.org (Kaiser family foundation) and CDC and WHO.

The COVID-19 pandemic is responsible for affecting many people’s mental health negatively.

 

( in USA)

One in 10 adult reported anxiety or depressive disorder before covid, the number rose to 1 in 4, difficulty sleeping (36%) or eating (32%),increases in alcohol consumption or substance use (12%)and worsening chronic conditions (12%), due to worry and stress over the coronavirus.

2020 saw 41% increase in anxiety than 11% pre-covid era.

 

In July, The Washington Post reported that one out of four women who became unemployed during the pandemic said it was because of a lack of child care, “twice the rate among men.” mothers, as many are experiencing challenges with: school closures lack of childcare and loss of income.

With vaccination in full swing we should work on –

Encouraging people to get vaccinated and seek health for mental health.

May is mental health month so I decided to wear green to raise awareness while talking about this difficult year in our life.

Please be kind, support and help, Check on each other, Pay it forward.

Text/call  two people once a week to let them know they are not alone.

Honored to be associated with this wonderful production.

https://www.youtube.com/channel/UCHiBt2B2-j9zYbc-6xeaxDA

 

 

 

 

 

 

Fear is the strangest thing- do you have a grip on your own?

 Desi Moms Network - A community for Desi Moms with Special need children, if you know anyone who needs help, please connect them to me.

This morning I woke with strangest feelings. Actually everyday brings different emotions in general. But now a days our Mornings begin with whats app msgs. The grim situation is India is worsening everyday.

These msgs can decide direction of the day. I have been getting better at keeping things in right perspective but some day are just not right days. 

I have started “Meet the Mom and learn” series for the group - This Saturday it was my turn to share my life stories with the Moms in the group. For years I have been trying to but cannot change myself in one aspect - procrastination. Somehow I work better under the deadline pressure. So that was the same case - yah, It will get done, almost there and all those usual excuses. 

So this morning was one of those. When I needed to put my thoughts in line, composed and organized they were all over.

The difficult news carry the weight of not only its own but from the past too and I think thats what happened. It sure did and I burst into tears during a phone conversation with a friend. I usually am good in handling things and my sure brain works in trying times. But this time I was just sucked into its game. I was very fine right after that. Facing my own fear and what if and what will I do kind of thoughts - they did play their dirty game but soon I had the handle on things. I did what I am good at. Reached out and learn some more. 

and then It was time to work on my presentation. I think I did okay. After that went to see a friend near by, and then did some more work because while walking back from hers I found something else to add. off course thats how it works. right :)

Finally an hour before the presentation the slides were up and then it was time to get ready and have dinner and then the game was on.

A very old Saree came out because I didnt want to deal with hassle of ironing and needed an easy drape.

My sister's work trip always benefited me. This is from my No-3 sister Varsha's work trip. A Gujrati Gota Patti Saree.

I so needed this kid to show me the fun and gundagardi #cutenessoverload

To show what I really am - A desi in the town

I was asked to join a board of a very prominent Non Profit in Boston in the area of Special Needs.  The process was going on for a couple of months and May 3rd Monday was the first Board meeting I joined as the new member.

The Federation has been there for a long time but didn’t have any Desi ( Indian) member. I got to know about federation quite a few years ago, Joined their Parent Consultant Training Institute (PCTI) in 2015 and learnt a lot. It is to empower parents to be their kids advocate in the world of special education.

I don’t think I utilized what they offered fully but sure leant something. More than that I understood the power of “rights” and “knowledge”.

I made some wonderful friends. I did volunteer for few years with them for some events so I know their mission really is to empower parents.

When they asked if i would be willing to be a part of Board I was more than delighted to. The board is made of some amazing and successful individuals and being part of that great team is really gratifying.

Another organization is Mass Families. Their mission is also very similar. They also add a layer of political activism to empower parents. I was part of their leadership series in 2017. They also reached out this year to make me one of them - officially. 

I joined Mass Families’s board and got appointed their treasurer. The email announcement came on Monday too. I hope I do justice to all the expectation. 

Monday May 3rd - to support Desi families and showcase my culture and identity  I had to wear a blue saree. I have been known to wear sarees in Boston State House or any event related to special needs families. Someone did comment that they look forward to seeing my saree.

If you know anyone who needs help navigating the special needs world please suggest them to visit Federation’s site.

https://fcsn.org 

Know more about Mass Families 

https://massfamilies.org ( their home page features our family in one of their slide (the last slide)  :) A picture taken on one Thanksgiving. - So thankful .

A simple bengal taant -years old. My Sister Seema’s old treasure. 

I had a difficult  weekend with so much going around us. Monday needed some cheer. A packet arrived and brought some sunshine from Texas. Deepika you have no idea. It is not just a gift, it symbolizes love, respect, empathy and friendship.  Thank you.. I have never met Deepika, she is part of Saree Speak group and had interviewed me twice. She had done with so many people but yesterday she made me feel "one of a kind" her note said - "Love that I met someone as courageous as you! Fate and destiny often decide who we meet in our lives. Thankful for that ❤️, Looking forward to meeting you in person, God willing" Cannot wait to drape this beauty.

My post "difficult weekend" 

https://jayapandey.blogspot.com/2021/05/if-you-feel-despair-you-are-not-alone.html

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.