Cooky, this is incredibly powerful. Reading your letter to your September 2024 self brought a massive wave of recognition. That specific, crushing realization that the safety nets we assume are there simply aren’t built for the complexities of severe special needs or profound caregiving.
"I can't go on, but you will have to go on for another 50 weeks"—that is the absolute definition of what it means to find the bedrock of resilience when everything else is stripped away. The physical and emotional exhaustion of navigating a broken medical system while managing a loved one's crisis is a lonely, silent kind of heavy lifting. Obviously you are amazing and full of grit and resistance.
Omg, Cookie, I had no idea, you are an amazing person, and I love that you do this a team with a supportive husband. Forgot to add that I'm so glad that you had that tenacity to keep pushing, took me a while to build up that strength, not be fobbed off with a pill or its the dementia diagnosis, so glad you did.
But Cooky, you ARE doing it! And such a good job too. What a raw and honest piece. I am so sorry what you and Olivia have been through. Thank goodness she has a tenacious mama who figured it out. ❤️❤️
I AM doing it, aren't I? It's gone midnight here, just got her to sleep and this is when she's well. But she's been adorable. Loved your Paris adventures ❤️
Whoa what an incredible story. I was completely in shock reading the beginning of this. I am a firm believer relentless optimism will take you on a path with joy down the road. 🩷
I don't know what to say, other than - you're amazing. I'm so glad you finally found out what was causing so much difficulty for Olivia and that she is now happy and settled into your new life.
What a letter, what a time of it. Though we have been special needs parents for similar amounts of time, you continue to show me how to cope! Writing it down and telling the world has been powerful.
Don’t get me started on what we have walked alongside each other through. Blub. What a GIFT you were forced to move in next to me for that short time! Little did you know you’d never escape me, however hard you try!
What an ordeal! I am also a diehard optimist, and also I fully understand those low points of crying "uncle" to the Universe. (Is that just a US saying?) As Shakespeare wrote, "all's well that ends well" - and it is, but the getting there is the learning part. Thank you for sharing your heartening story of "getting there" and the good news it ultimately brought!
I'm still crossing my fingers that we really have got to the end, part of me is just waiting for it all to start up again, hopefully I'll gradually come down off high alert given time!
I also have tears in my eyes. The true love for your family and your daughter shines through, even in those dire days. You truly are powerful and strong. Thank you.
I had an ovarian torsion a few years ago and thought I was going to die from the pain. I cannot image watching your baby struggle and not knowing what to do. Not knowing how to make the pain go away for her. Good job, mama. I'm so glad you both are doing well and have moved on from that awful place.
Ovarian torsion sounds horrific, you poor thing! I believe that if Olivia was not learning disabled, we would have gone to A&E, been admitted and she would have been treated immediately. Makes me so angry. Anyway, we got there!
So much of this felt painfully familiar, the sleepless nights, the police being called, the fear, and the loneliness of knowing that no one else can really step in and do it for you. Our circumstances are different, but I recognized myself in so many parts of your story. I’m glad Olivia is doing better, and I’m grateful you wrote this. There is something powerful in finding someone else’s words and realizing you aren't the only one living through the unthinkable.
Absolutely! There is power in sharing and putting words to experiences so many tuck away. That's exactly the reason I came here too. Share stories, bring the unspoken out of the shadows, find community!
Cooky this made me cry, quite an achievement given my mood stabilisers 😂😭 I feel SO seen. Thank you so much for putting pen to paper. The hard-won, gentle but powerful wisdom is in your every sentence!
Cooky, this is incredibly powerful. Reading your letter to your September 2024 self brought a massive wave of recognition. That specific, crushing realization that the safety nets we assume are there simply aren’t built for the complexities of severe special needs or profound caregiving.
"I can't go on, but you will have to go on for another 50 weeks"—that is the absolute definition of what it means to find the bedrock of resilience when everything else is stripped away. The physical and emotional exhaustion of navigating a broken medical system while managing a loved one's crisis is a lonely, silent kind of heavy lifting. Obviously you are amazing and full of grit and resistance.
Thank you so much for this, much needed today - feeling particularly not resilient right now! Really perfect timing ❤️
Omg, Cookie, I had no idea, you are an amazing person, and I love that you do this a team with a supportive husband. Forgot to add that I'm so glad that you had that tenacity to keep pushing, took me a while to build up that strength, not be fobbed off with a pill or its the dementia diagnosis, so glad you did.
Thank you so much Khadra, I'm sorry you had to push too, it's something all carers learn in the end, the hard way unfortunately x
Ah Cooky. You are amazing x🫂
But Cooky, you ARE doing it! And such a good job too. What a raw and honest piece. I am so sorry what you and Olivia have been through. Thank goodness she has a tenacious mama who figured it out. ❤️❤️
I AM doing it, aren't I? It's gone midnight here, just got her to sleep and this is when she's well. But she's been adorable. Loved your Paris adventures ❤️
You are! I love reading about your adventures and think you’re amazing. ❤️
You are remarkable
Whoa what an incredible story. I was completely in shock reading the beginning of this. I am a firm believer relentless optimism will take you on a path with joy down the road. 🩷
Thank you!
Wonderful as always Cooks ❤️ xxx
😘
So sorry you and Olivia had to go through all this, but so glad both you and she ended up positive when it was over.
Thank you Helen
Oh I just loved this so much ❤️❤️
That means a LOT, am a big fan of your writing ❤️
Thank you , that’s so lovely to say. ❤️
I don't know what to say, other than - you're amazing. I'm so glad you finally found out what was causing so much difficulty for Olivia and that she is now happy and settled into your new life.
Thank you so much Cali ❤️
What a letter, what a time of it. Though we have been special needs parents for similar amounts of time, you continue to show me how to cope! Writing it down and telling the world has been powerful.
I couldn't have done it without you! You literally walked it alongside me, minute by minute. What a pal ❤️
Don’t get me started on what we have walked alongside each other through. Blub. What a GIFT you were forced to move in next to me for that short time! Little did you know you’d never escape me, however hard you try!
WORD
What an ordeal! I am also a diehard optimist, and also I fully understand those low points of crying "uncle" to the Universe. (Is that just a US saying?) As Shakespeare wrote, "all's well that ends well" - and it is, but the getting there is the learning part. Thank you for sharing your heartening story of "getting there" and the good news it ultimately brought!
I'm still crossing my fingers that we really have got to the end, part of me is just waiting for it all to start up again, hopefully I'll gradually come down off high alert given time!
🤞♥️🤞
Oh this is just so beautiful! I love how you talk about everything with infectious optimism despite what’s going on for all of you.
And to get a shout out is something I will treasure forever!
I'm actually regretting not linking to you by name, so this is very gracious of you! 😘
I also have tears in my eyes. The true love for your family and your daughter shines through, even in those dire days. You truly are powerful and strong. Thank you.
Thank you so much Vicki, I definitely didn't feel strong a few months ago, but I guess I must be!
You are so strong!!! And so is Oivia!
I had an ovarian torsion a few years ago and thought I was going to die from the pain. I cannot image watching your baby struggle and not knowing what to do. Not knowing how to make the pain go away for her. Good job, mama. I'm so glad you both are doing well and have moved on from that awful place.
Ovarian torsion sounds horrific, you poor thing! I believe that if Olivia was not learning disabled, we would have gone to A&E, been admitted and she would have been treated immediately. Makes me so angry. Anyway, we got there!
So much of this felt painfully familiar, the sleepless nights, the police being called, the fear, and the loneliness of knowing that no one else can really step in and do it for you. Our circumstances are different, but I recognized myself in so many parts of your story. I’m glad Olivia is doing better, and I’m grateful you wrote this. There is something powerful in finding someone else’s words and realizing you aren't the only one living through the unthinkable.
This is exactly why I started Extreme Parenting - to not hide away what our lives are like, and to connect with other wonderful parents like you x
I’m grateful we found each other here!
Absolutely! There is power in sharing and putting words to experiences so many tuck away. That's exactly the reason I came here too. Share stories, bring the unspoken out of the shadows, find community!
Cooky this made me cry, quite an achievement given my mood stabilisers 😂😭 I feel SO seen. Thank you so much for putting pen to paper. The hard-won, gentle but powerful wisdom is in your every sentence!
Oh bless you, I don't feel very wise! We're all just muddling through as best we can, aren't we?