Child with an illness
My son was born with a lifelong illness and almost died not long after birth, we then spent weeks in hospital and he’s now doing well, acts like any other baby and with meds controlled and constant monitoring he should be okay. There is always the risk someone wouldn’t be there to help him (like me or someone else trained to give emergency care) and he could die.
I cry every day about his illness. I’m struggling to bond with him still months on and the PTSD from the birth doesn’t help by filling me with constant fear/anger. And the toll it’s taking on my poor husband I feel like I’m really starting to see him come apart at the seams.
I also find friends really unhelpful with their comments, some say it could be worse, some act as if him not being dead makes it okay that he’s so ill and one person said to me that he’ll be more than just his illness one day. That last one cut really deep.
Feel pretty angry with the world and just was hoping to get the perspective of other mums with unwell children because most people just don’t get it.
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Hi, my son was born with a genetic diagnosis with huge potentials of this that the other.
I would say one thing, it's okay to not be okay at first and for your partner as well. Not sure if his illness was something that happened post birth, you didn't expect it your partner didn't expect it.
You are allowed to feel a mix of all emotions, worry, grief, love to your baby. It's also okay you haven't yet found that bond with him it will come be kind to yourself.
I always say one thing, you have been given your baby because it is meant to be yours, it will teach you strength and resilience I promise
And medical professional I take it all sometimes with a pinch of salt they sometimes just put fear up you, but you know your baby best you know what they need
No we hadn’t expected it at all, we didn’t even know we were carriers of the condition he has.
You sound like an incredible mum, I hope I can build up the strength to be that for my son.
You will I promise, day by day you will see less of his illness and more of him your son. It's all just a shock now, it's something you didn't expect but yet had to deal with regardless, it's maybe the baby you didn't Invision to have but received. This is your story your family it's all meant to be, he is here to teach you and your family something incredible.
Most importantly right now he has proven to be strong and a survivor! 🩵
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Child with an illness
My son was born with a lifelong illness and almost died not long after birth, we then spent weeks in hospital and he’s now doing well, acts like any other baby and with meds controlled and constant monitoring he should be okay. There is always the risk someone wouldn’t be there to help him (like me or someone else trained to give emergency care) and he could die.
I cry every day about his illness. I’m struggling to bond with him still months on and the PTSD from the birth doesn’t help by filling me with constant fear/anger. And the toll it’s taking on my poor husband I feel like I’m really starting to see him come apart at the seams.
I also find friends really unhelpful with their comments, some say it could be worse, some act as if him not being dead makes it okay that he’s so ill and one person said to me that he’ll be more than just his illness one day. That last one cut really deep.
Feel pretty angry with the world and just was hoping to get the perspective of other mums with unwell children because most people just don’t get it.
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