"Mommy, sometimes a part of me feels like it would be easier to have a different mommy. Not always and not me fully. Am I hurting you by saying this?" I have been preparing for 2 years to answer this question & I aced it! #parenting in #NEISVoid #LongCovid #motherhood🧵1/n
First, I lightened the mood my saying "believe me, I would like to be a different person as well, in a different body". He smiled immediately.
Next, I acknowledged that his thoughts were perfectly rational & had no malice at all. 2/n
I went on to explain that I was not upset. He simply wants to go on playdates with friends without worrying about infecting mommy & making her more sick, or go eat out in restaurants or not be the only kid in class masking. Any kid would want that, any adult would too! 3/n
I apologised - not for being ill - but for him to have to go through all this because there were zero mitigating measures in the community. I thanked him for doing all that he was to protect me and expressed my gratitude. Finally I reassured him that he had not upset me. 4/n
I told him I was proud that he could express such a deep emotion to me without fear of being judged. We made a list of friends whose parents are cooperative (testing, masking)- he can have playdates with them. We decided to do a restaurant dinner at home with his favourites. 5/n
He said he was fully prepared to accept that I will be upset but wasn't surprised I when I didn't get upset. Then he said "You know what mommy, I don't think this conversation would have gone so with any other mommy. I'm glad I have you as my mommy." 6/n
He gave me a hug, a kiss and left the room humming the pokemon theme song. Reader, I won't lie. I left out a big sigh, relieved that it had gone well but then shut myself in my closet and cried. I should not have had to go through this. 7/n
An entire community & medical system's failure brought me to this position. How many mothers and fathers have had to have this conversation? How many husbands and wives? How many of those would have gone as well as mine did? 8/n
I do know one thing though. I'm an incredibly resilient person with endless perseverance. Life is unfair and suffering is everywhere. While it is important to express our feelings, it is equally important to not dwell on them for too long & move on to finding solutions. 9/n
Falling down. Being Hurt. Getting up. Falling down again. Rinse. Repeat. This is how life with chronic illness is going to be. Might as well learn to cope with it in our own ways! I will not lie though - a part of my heart did break today. Not enough to break my spirit though. 10
We are so touched by the kind words here for my son and I. Thank you! Very comforting to read these as I throw up for the fifth time at 4 am (thanks Methotrexate) trying not to wake my husband or son up!

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More from @renudhinakaran

Oct 18
If you have #LongCovid & are married/in a relationship, please sit down and have a chat with your partner - about your symptoms, what you can & cannot do, how they can help you. 1/
Your relationship will be affected. It will change beyond recognition. With some effort though, it can be a good change that will help your recovery & solidify your relationship. 2/
You will be in pain & may not even be able to breathe properly. You will be confused. Please remember, your partner will be too. If they can't understand what you're going though, what you need & what they can do, it is not going to help either of you. 3/
Read 6 tweets
Sep 30
If you have #LongCovid & live in the Netherlands, here are the things that you are entitled to:
1. Physiotherapy for 6 months to 1 year even if you don't have aanvullendeverzekering (might change from Jan 2023) with home visit.
2. Occupational therapist (with home visit) 1/
3. Trippelstoel (through insurance, with help from OT)
4. Wheelchair and traplift from WMO, if your huisarts & OT give detailed letters supporting it
5. Ask for a referral to a Hartkliniek Cardioloog if #POTS is suspected. 2/
6. Ask for a pulmonoloog & rheumataloog referrals. Insist on an autoimmune panel - UMC Utrecht has post Covid autoimmune specialisations. It is an uphill task but possible.
7. If your 6 minute Walking test is below 92 SpO2, you are entitled to an oxygen concentrator at home. 3/
Read 5 tweets
Sep 28
On this day last year, on the eve of my husband's birthday, we all felt hopeless. #LongCovid had taken almost everything away from me & I wanted to die. Today, I cooked him his favourite meal & danced with him. I didn't realise how happy we were until I watched this! #NEISvoid 1/
@anandkumarn is a remarkable man. Smart, intelligent, charming, kind to a fault, fiercely protective of his family, a wonderful son & father, a well respected professional. He is the most loving & devoted husband a girl can dream of - a true partner & a prince among men. 2/
He is not faultless, nor is a Saint. He has, however, worked hard to accept his mistakes, learn from them, make amends & be a better man every day. He deserves more happiness than he now has & I will do everything in my power to get there. 3/
Read 5 tweets
May 24
Stop doing standard tests on #LongCovid patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including #pwme.1/
The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
Read 9 tweets
May 22
I used to declutter every three to four months, until #chronicillness happened. When I came back to our home in NL after my treatment in India, I was shocked to see how it looked. It was nothing like the home that @anandkumarn & I had lovingly built together. 1/
Still, I didn't want to jeopardise my hard worn health (I hesitate to call it recovery as I'm in bed 50% of the day - I was 90% in bed before). So with the help of a lovely lady who is helping us, I've been tackling inch by inch. 2/
It is starting to look like our home slowly. Truly decluttering this time & giving stuff away instead of just putting them in a place I can't see. We are redoing our bedroom to look less like a patient's room & a place that I will truly love to be in. 3/
Read 4 tweets
May 18
Today is my appa's birthday and of course I wished him good health & peace, expressing my love. He said something that shook me: "You've made me worthy of my life." 1/ #parenting
As someone who grew up with a yearning for approval from my father, this should have felt amazing. Strangely, it didn't. I mean it felt nice to hear, sure, but I felt no sense of achievement or pride or vindication. That, to me, is the true achievement here! 2/
It has taken years of therapy and living through endless struggles to realise what a good (albeit flawed) person I am - someone who never gives up & is always there for those who need me. That is enough. That should be enough. 3/
Read 4 tweets

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