Thank you for letting us have a peak into Sophie's life.You have been the positive light that has given me hope in our Dravet journey. You've given me courage to fight for my daughter just as you do. You have given me the feeling of solidarity to know I'm not in this alone. Please give Sophie big birthday hugs from one Warrior 💜 to another!🥰🥰
I was three months short of my thirtieth birthday when Katie was born. I remember turning thirty very clearly, I'm sure you do too. You finally feel like a grown up. Thirty is a milestone. I thought life would be so different and I spent a long time grieving.
Happy birthday to Sophie. She is blessed to have her family and her caregivers, people who love her and make her life better. She is loved, just as she is, and who could ask for more?
You have such a beautiful and loving daughter and such a beautiful and loving family. I see from reading every post you've made that you're the most perfect loving mom to your family. I admire you deeply for that. If I'd have been able to read you while raising my kids in the 80s and 90s, your example would have made me a much better parent to my neurodivergent children, with whom I struggled mightily. You are amazing and your children are amazing. I hold you in the highest regard Elizabeth.
I can imagine it's hard to put into words the ocean of emotion you must be feeling. But you got the topline, that Sophie has been and is so well loved, and that holds everything else. Happy birthday to your beautiful daughter, and to you.
I wish I had the ability to put my feelings into words that resonate like yours. My Son turned 33 in November and for some reason this one was harder than the others. And, they are always hard. I'll be 64 in a week. I spend so much time worrying about the "what ifs." He is severe/profound spastic quadriplegia and nonverbal. He is mostly bed bound and it breaks my heart that I haven't tried harder to give him the same types of experiences that Sophie has had. Our world is tiny. I stay afraid and anxious everyday about what our future holds. I can't imagine losing him and I am terrified of leaving him in his tiny world without me.
Oh, Donna. You have provided a home and care and love for your son for 33 years. That is an amazing and beautiful thing. I understand your anguish intimately -- what you see of our life is, as you might know, just a snippet. I sometimes describe Sophie's life as one similar to that lived by an anchorite. I hope you can stay in the present and try not to worry and be afraid of the future. What will come will come, without your worry. I'm sending you big love and hugs.
Milestones like this always make me feel so grateful and so grief-riddled at the same time. Sometimes I wish someone had told me that loving someone is so different than what you think it will be—that it feels somehow bigger and stranger and more raw. Like stepping into direct sunlight or watching something curl up in a fire and burn to white hot dust.
It consumes, it is beautiful, it is everything.
But if someone had told me this, I wouldn't have known how to believe it, or how to understand it back then.
I'm glad that I do now.
Happy birthday, Sophie. Your life—and the love inside it—shine like the sun.
Happy belated birthday to Sophie and all my love to you, Elizabeth. You are a warrior and a loving mom. 30 is a “milestone” for anyone but even more so for Sophie who has been battling for so much of her life. She is loved, tremendously so. And that is the most important thing for anyone.
For over a decade I have been reading your posts, commenting occasionally and pondering the remarkable way you have dealt with life's challenges. One of the reasons I have been so drawn to you and Sophie is the incredible similarity between her and my daughter, Chaya's conditions - and that they are the same age. Well, actually one month apart. (Chaya turns 30 on April 25th). I have always been especially impressed witht the magnificent birthday celebrations you lavish on Sophie. I must confess that I rarely even note the day in any way. Maybe this year, thanks to the video of the beautiful cake and moving party you made Sophie I will at least do something to celebrate this milestone for Chaya. Wishing you the strength to continue loving and nurturing Sophie for many more years.
Thank you so much, Frimet Roth -- for all your kind thoughts, your engagement, and, of course, sharing a bit of your own life as a caregiver. I love that our girls are the same age -- what a year 1995 was, right? This year was really hard -- and Sophie's "cake" was actually just this incredible cake candle that I bought around Christmas time specifically for her birthday as she can't eat anything by mouth now. Basically, the caregivers and I had a tea party, and while a couple of friends stopped by with gifts, it was a pretty quiet affair. I wish you continued strength and courage -- would love to share more with one another by email or letter, if you'd like?
oh my, such beautiful, love-bursting pics. Esp love the American Girl doll one. I have a pic from our visit to you on the UWS of Hayley & Sally with Elizabeth in my kitchen. I celebrate her everyday.
This post surprised me by making me weep for a good long time. I believe the tears might have been ethereal creatures released and sent to you and Sophie to bring deep joy. I’m sorry this sounds so weird there it is I am kind of a weirdo. Big Love to you both.
Thank you for letting us have a peak into Sophie's life.You have been the positive light that has given me hope in our Dravet journey. You've given me courage to fight for my daughter just as you do. You have given me the feeling of solidarity to know I'm not in this alone. Please give Sophie big birthday hugs from one Warrior 💜 to another!🥰🥰
Brought tears to my eyes too. I've been with you since day one 2008. Happy Birthday Sophie!!
Lots of love from Portland Maine.
~TJ
I was three months short of my thirtieth birthday when Katie was born. I remember turning thirty very clearly, I'm sure you do too. You finally feel like a grown up. Thirty is a milestone. I thought life would be so different and I spent a long time grieving.
Happy birthday to Sophie. She is blessed to have her family and her caregivers, people who love her and make her life better. She is loved, just as she is, and who could ask for more?
You have such a beautiful and loving daughter and such a beautiful and loving family. I see from reading every post you've made that you're the most perfect loving mom to your family. I admire you deeply for that. If I'd have been able to read you while raising my kids in the 80s and 90s, your example would have made me a much better parent to my neurodivergent children, with whom I struggled mightily. You are amazing and your children are amazing. I hold you in the highest regard Elizabeth.
I can imagine it's hard to put into words the ocean of emotion you must be feeling. But you got the topline, that Sophie has been and is so well loved, and that holds everything else. Happy birthday to your beautiful daughter, and to you.
Happy birthday. This wonderful soul was born to be loved.
I wish I had the ability to put my feelings into words that resonate like yours. My Son turned 33 in November and for some reason this one was harder than the others. And, they are always hard. I'll be 64 in a week. I spend so much time worrying about the "what ifs." He is severe/profound spastic quadriplegia and nonverbal. He is mostly bed bound and it breaks my heart that I haven't tried harder to give him the same types of experiences that Sophie has had. Our world is tiny. I stay afraid and anxious everyday about what our future holds. I can't imagine losing him and I am terrified of leaving him in his tiny world without me.
Oh, Donna. You have provided a home and care and love for your son for 33 years. That is an amazing and beautiful thing. I understand your anguish intimately -- what you see of our life is, as you might know, just a snippet. I sometimes describe Sophie's life as one similar to that lived by an anchorite. I hope you can stay in the present and try not to worry and be afraid of the future. What will come will come, without your worry. I'm sending you big love and hugs.
Milestones like this always make me feel so grateful and so grief-riddled at the same time. Sometimes I wish someone had told me that loving someone is so different than what you think it will be—that it feels somehow bigger and stranger and more raw. Like stepping into direct sunlight or watching something curl up in a fire and burn to white hot dust.
It consumes, it is beautiful, it is everything.
But if someone had told me this, I wouldn't have known how to believe it, or how to understand it back then.
I'm glad that I do now.
Happy birthday, Sophie. Your life—and the love inside it—shine like the sun.
Happy belated birthday to Sophie and all my love to you, Elizabeth. You are a warrior and a loving mom. 30 is a “milestone” for anyone but even more so for Sophie who has been battling for so much of her life. She is loved, tremendously so. And that is the most important thing for anyone.
Happy birthday to Sophie!
Happy Birthday, dear Soph!
For over a decade I have been reading your posts, commenting occasionally and pondering the remarkable way you have dealt with life's challenges. One of the reasons I have been so drawn to you and Sophie is the incredible similarity between her and my daughter, Chaya's conditions - and that they are the same age. Well, actually one month apart. (Chaya turns 30 on April 25th). I have always been especially impressed witht the magnificent birthday celebrations you lavish on Sophie. I must confess that I rarely even note the day in any way. Maybe this year, thanks to the video of the beautiful cake and moving party you made Sophie I will at least do something to celebrate this milestone for Chaya. Wishing you the strength to continue loving and nurturing Sophie for many more years.
Thank you so much, Frimet Roth -- for all your kind thoughts, your engagement, and, of course, sharing a bit of your own life as a caregiver. I love that our girls are the same age -- what a year 1995 was, right? This year was really hard -- and Sophie's "cake" was actually just this incredible cake candle that I bought around Christmas time specifically for her birthday as she can't eat anything by mouth now. Basically, the caregivers and I had a tea party, and while a couple of friends stopped by with gifts, it was a pretty quiet affair. I wish you continued strength and courage -- would love to share more with one another by email or letter, if you'd like?
Yes, I would also love to share more. My email is:
frimet.roth@gmail.com
LOVE 🫶🏻
oh my, such beautiful, love-bursting pics. Esp love the American Girl doll one. I have a pic from our visit to you on the UWS of Hayley & Sally with Elizabeth in my kitchen. I celebrate her everyday.
Happy Birthday, most precious Sophie!!!
This post surprised me by making me weep for a good long time. I believe the tears might have been ethereal creatures released and sent to you and Sophie to bring deep joy. I’m sorry this sounds so weird there it is I am kind of a weirdo. Big Love to you both.