This blog is about my daughter, Aditi whom we lovingly call Peu (pronounced as Pew). It means “sweetheart”. She has been diagnosed with a very rare disorder ,’CDKL5 genetic disorder‘. She bravely fights to overcome her challenges and teaches me numerous lessons each day. She personifies the statement ‘Never Give Up’.
In my posts, I will share my perspective of Peu’s various challenging experiences and my learning from each of them. Each post will have a key takeaway for parents who might face or are facing a similar situation. Your feedback, comments, advice and queries will be appreciated.
In India, usually, before you start a new work, you offer prayers to God and remember your ancestors, seek blessings from the elders in your family and invite good wishes from friends and dear ones. On a similar note, in my first post, I wish to express gratefulness to my family, friends and well wishers who have supported me and helped me during our troubled times.
A special mention of Gouri, Peu’s nanny from her birth to four years. She was my pillar of strength during the early years of struggle. Her love and care is priceless.
I express my sincerest gratitude to two of the most important people in my daughter’s life, Cyndy Manes and Michelle Turner. They have been crucial in establishing hope in us as we raise Peu. Their love, compassion, time and energy for Peu is beyond compare. More about them in the upcoming posts.
Cyndy Manes is an ABM (Anat Baniel Method) therapist from San Antonio, Texas.
Michelle Turner is a movement integration specialist and educator from Phoenix, Arizona.
We are grateful to all the doctors, dietitians, therapists and hospital staff of the umpteen hospitals and clinics that we have visited so far, worldwide. Their support have enriched my experience.
My sister-in-law, Rahel Mathews, urged me to start a blog and share my unique experiences as a special needs parent.
We express our gratitude to one and all and seek your best wishes.
Here I end my first post with a hope that my upcoming posts will be beneficial for parents.
A quick update in my first post: My brother, Dipangkar, who amidst his very busy schedule, edits all my draft posts meticulously before I publish them.
LovePeu 
I am glad as I’ve seen you and as I know you… you didn’t give-up. It’s true, only problems lead you to the way out of it. My own sister is also having some unique disorder, “by birth”. Till today she is on wheel-chair which she can’t even drive, someone else does that for her. We don’t know what it is, as my uncle who happened to be a paediatrician could not find it. She is 40 now. I have seen her growing in chair.
BTW my intent was not to state my problem but to appreciate the idea of sharing…
World has changed around significantly and so is the medical science, sharing these would definitely be a support as well as guidance for those who desperately need it.
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Read your Blog…an amazing, courageous, brave mother-daughter….god, bless you and your daughter with health, fast recovery and mental strength….our whole hearted sincere prayers for you and your LovePeu daughter….best wishes….
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Really very touching blog! How much I wish your daughter to overcome whatever problem she has been facing for so many years ….. great endeavour is writing up your experiences , Paromita!!
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Thank you for your wishes. Hopefully other parents in similar situation start believing in their instincts and the responses displayed by their child instead of depending on external means.
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