How do you come to accept your child has/may have a disability?

[superfrizbee]

DS - 2 months old - has recently been in hospital with bronchilitus. His airway got blocked and he went into respitory arrest, so he was intubated and sent to a ICU. After coming out of there onto another ward he had what docs thought were a couple of short seizures. He had a normal eeg, but an mri of his brain revealed some damage in one area, which they think was caused by a stroke. They cant give an answer of how significantly this might effect him long term, if at all. The neurologists said it might effect his movement, it might not. The mri only reveals changes to the structure rather than brain function so I just have to take the wait and see approach, see if he meets his milestones and get intervention like physio etc if he doesnt.

At the moment he is BFing well, moving all his limbs equally and doing the things he should be doing at his age. They said to be positive, and that if they hadnt told us, we would never have known. But still there are no guarantees and I'm finding this hard to come to terms with. Cerebal palsy is something that springs to mind and I find myself going down a negative spiral thinking about it, even though he might not even have it.

I do and will love my son with all my heart regardless of his abilities or disabilities, but I need to be strong for him and at the moment I'm not being. Ladies with children with special needs or disabilities, how do I go about accepting the unknown, being positive and moving our family on? Before I lose my mind.

 

[Thurinius]

I think all you can do is concentrate on the present. As you say so far your son is going great. If you start looking too far forward and speculating you will go mad. I've just found out my son is on the autistic spectrum I try not too look too far forward and wonder if he will ever talk properly or be able to leave home or hold down a job or.... Like I said that'll drive you nuts.
Enjoy your son now, enjoy his progress as it comes and worry about the future when you have to.
I hope this helps. Big hugs your way.

 

[Reid]

Definitely echo the above just take each day as it comes and enjoy it xx

 

[annanouska]

in a way the Dr is right u would never had known and sometimes knowing is harder. My son has epilepsy, weird dots all over his brain mri too which they are still deciding quit what it is and how much of an issue. If they hadn't run the mri due to where his seizures original from as per the EEG we would t have known. He looks quite "normal" most don't even realise how many issues he has. U do sort of just get used to it over time, u learn to accept it and slightly ignore it. I would try and just go about as usual, do t research everything and anything u will convince yourself he has lots of horrible nasty things which he probably doesn't. Try to just carry on doing things as normal keep a loose eye on milestones etc and see how u go on

 

[Linny]

Aw wow, it really sounds as if you've been through it! Going back to your question and as to how to accept it - I guess for me it's simple. It's all I've known her to be and some days I do a lot better than others. Saying all this my daughter is wonderful and every tiny milestone brings all of us such immense joy. Now in my circumstances, I know for sure that my daughter is going to be delayed. But as her condition is very rare I really have no idea how much or how little. In your case it is only a what if so do as the other ladies have said. Enjoy every moment of the now with him. Because the alternative of spending this time worrying about what may be will only make you miss out on this precious time. The chances are he will be absolutely fine, so try not to spend these moments worrying about the negatives. If he does fall behind however, you will deal with it at that time and you will get plenty of help and support to get you through it.