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Original poster

It's 16 years today I lost my lad.

71 replies

Zephyr5 · 16/05/2021 04:29

Hi all,
Long time lurker. Yoni Brian, Sistine Chapel screamer and Korean Nan etc.

I don't know really why I'm posting. I think I just need to unload.

It's 16 years ago today that I gave birth to my boy. I was 17. My boy was born at 32 weeks, he was 2lb 5oz and had Down syndrome. My lad fought as hard as he could but only lived for 20 hours. I miss him, it really hurts. More today than ever before and I can't explain why. I want my boy here, I want to kiss and cuddle him and I want him to know that he is my entire world.
I have a stepdaughter now, she's 11 and a pain in the arse but absolutely incredible, she makes me laugh on a daily basis but I want my boy.

OP posts:

SpacePug · 16/05/2021 10:15

He sounds like a beautiful baby, thinking of you today. He would have been so proud of his mum

Original poster

Zephyr5 · 16/05/2021 10:22

Thanks all, I've not slept. I never do the night before. You're right, two different consultants both told me that the surgery was extensive and he probably wouldn't survive it. So as a mum, I made that decision. I know every mother says their baby is the most beautiful thing ever to grace the earth but Keston truly was, he was battered and bruised, teeeeny tiny, and had a face only a mother could love! Luckily I was his mum, and I adored him. Thank you all from the bottom of my heart. You've all helped me through a very dark night x

OP posts:

Pinkypink · 16/05/2021 10:25

I am crying reading your posts. I am heartbroken thinking of all you went through and how much love you had and still have for him Keston.
I agree with one of the posters who said that all he knew was love in his life. He would have felt how much you loved him and known how much you wanted him to stay alive.
Be proud that even at 17 you had the strength to love him and care for him.
Think of something that might bring you a little joy today. A walk? A song you could listen to? Even a cup of tea in bed?
Do something to restore a tiny piece of you.
Wish you strength and hope you can allow your husband to comfort you a bit also

Koolandorthegang · 16/05/2021 10:32

He sounds gorgeous with his green eyes and wispy hair, so unique and one of a kind. I’m so sorry for your loss OP. You speak beautifully about him. You were a great mammy to him while he was with you

newnortherner111 · 16/05/2021 10:39

I hope your husband can be supportive and comforting today, and that your stepdaughter if she does not know already can come to know about her stepbrother and the love he brought to you.

Xigris · 16/05/2021 10:44

Ohhh Keston sounds adorable. I’m really thinking of you, I cannot imagine how hard this must be.

I actually live very very close to Keston in Bromley: it’s beautiful. It’s more of a village and has a common and several big, beautiful lakes. In fact part of it is called Keston Ponds. It’s lovely area. I’ve spent a lot of time there, child and adult. I’ll have a look of my phone and see if I can find you some photos.

Sending you and Keston love and light

SomethingNastyInTheBallPool · 16/05/2021 10:50

OP, there’s a wonderful Down’s Syndrome parenting group on Facebook called Future of Down’s. I believe it has an offshoot for bereaved parents. If you think talking with other parents who’ve been through this would help, you could message the admin of the main group and ask to be added.

partyatthepalace · 16/05/2021 11:04

Thanks so much for telling us about him OP - he sounds like an amazing little boy.

I’m so so sorry you didn’t get to keep him, but he’ll always be with you, and you sound like you are an amazing stepmum so I expect part of his legacy has been making you a great open hearted person for your stepdaughter.

You are very young to have gone through so much, and I bet you have a very rich life ahead of you, and he’ll be with you through that.

ThankYouHunkyJesus · 16/05/2021 11:14

I just feel so guilty, what if the heart and kidney surgery would've worked, what if I wrote him off too soon, what if he could still be alive with me now.

You did the very best you could do for your baby in the circumstances at that moment. What mother would do otherwise? You chose not to put him through something that would have probably been too much for him, you saved him from suffering. You held him and loved him instead. The decision you made was out of love and all he knew was that he was so adored by you. There would have been what ifs as well if you'd gone down another route. You were incredibly brave to do what was best for him at that time.

SittingAround1 · 16/05/2021 11:25

I'm so sorry for your loss. It's heart breaking.

I also think you absolutely made the right decision regarding surgery. Your little boy spent his short life loved and cared for by his mother.

Tylila · 16/05/2021 11:33

My son has Down Syndrome. I cannot imagine your pain and today you and your beautiful boy are in my thoughts. Much love to you.

Standrewsschool · 16/05/2021 11:35

Sorry for your loss

Mumblechum0 · 16/05/2021 11:40

Sending you love. It’s so hard isn’t it, my boy would have been 29 tomorrow. Your beautiful Keston will always be in your heart ❣

tiredanddangerous · 16/05/2021 11:44

I am so sorry that you lost your beautiful boy

AtoZed · 16/05/2021 11:58

I am so sorry for your loss. 💐

JaneExotic · 16/05/2021 12:50

What a beautiful name what what sounds like a beautiful boy. I hope you are finding some peace today, and some joy in the thought of him. X

Motnight · 16/05/2021 12:52

I am so sorry for your loss, Op.

Original poster

Zephyr5 · 17/05/2021 17:10

I just wanted to thank each of you that took the time to acknowledge my pain, no matter how anonymous this forum is it genuinely felt like I had a lot of friends looking out for me.

Yesterday was hard, as expected. Today has been better, I've eaten and had a therapy session. I'm still tired so I'm resting rather than running around at 100mph as usual!!

OP posts:

terrapintrouble · 18/05/2021 11:12

Hi , glad your feeling a little better today ❤️ and good that you've eaten and are looking after yourself still and it's nice to have a rest sometimes put your feet up and relax don't rush back into all the chores x

spiderlight · 18/05/2021 12:19

So very sorry for your loss, when you were barely more than a child yourself. Keston is a fantastic name - reminds me of a kestrel in flight. He spent every single minute of his life surrounded by pure love from a strong, brave mother - in that way he was incredibly blessed. I can't imagine how you must feel but I'm thinking of you and your beautiful boy

CormoranStrike · 18/05/2021 12:32

You sound such a loving mum to Keston. You did right by him, guided by the consultants, who led you to take the kindest path for him.

The fact you love and miss him as strongly now shows the powerful bond you have with your lovely boy.

Please don’t feel ashamed for grieving, there is no time limit on these matters.

You also gave him a beautiful name - not one I have heard of before, but I love it.

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