How to not let the worry and anxiety completely take over your life

[emkana]

Any tips?

I find I am watching ds like a hawk all the time, feeling sick with worry and anxiety and hardly being able to function - actually not functioning at all, dh is taking care of everything atm as he's on paternity leave.

Sorry, should explain -

ds eight days old today, diagnosis unclear and possibly weeks/months away from being made.

Risk of severe health problems, esp. respiratory issues.

I'm afraid it's all normal, I recognise exactly what you are describing, went through ity with ds1, and it comes and goes with ds3. I've found the thing is to go with the flow, accept it as normal, and wait for the worst of it to pass (it does, especially as you begin to get answers).

Emkana I've followed all your poats & the long raod you ahve been down with Sebastain & my heart goes out toyou. I think all you can do is to try & keep positive and take it all one day at a time. CAn you through yourself into a good book/crappy tv progarmme/ phone chats with frinds about big brother? anyhting that reminds you there is another world out there & it hasn't shrunk to just fit teh 2 of you.every day you can get through is a bonus adn will just strengthen teh bon d with your son. Don't forget he's only a week old & your hormones are probaly still all over teh place which never really helps does it.
I hope none of this sounds too trite - just thought it was baout time i came out of teh clloste to add my support. Take good care of yoruself

Oh Fio has it so right. The other thing that I found helped was spending some time with them when they're asleep! Sounds bizarre, but it worked.

like the others have said - I can remember what this feels like - especially when dd2 was born ( possibility she too would have down sydnrome) I can clearly remember in the recovery room after my c-section checking her for physical markers of Down syndrome... Now I just worry if she does not seem to be hitting milestones when everyone else seems to think she should - have since learnt that she will do it all in her own good time. Taken me 19 months.

As someone else said - still early days with bub and hormones and change etc are also still in play.

You are allowed to not cope - you know - you are allowed to be sad and angry and worried etc.

It is difficult with the road you have travelled and still on the journey of diagnosis and so on. But it is simple- one day at a time - one foot in front of the other.

Enjoy him - smell him - enjoy that newborn loveliness..... it is easy to say try not to let the other overtake that - it just does but try to have just moments... lay with him, stroke him - lose yourself in his lovely new babyness....

The rest will still be there but he will change so quickly - try not to cheat yourself of that.

You never ever ever forget that dreams and hopes you had for your babe - but if you always focus on that you miss the wonderful moments that are here and now.

Sorry I am rambling... will go now. Just wanted to say you are very much in my thoughts.

Congratulations Emkana!

I have read some of your posts on the pregnancy threads & know you have had such a hard time.!

Enjoy your baby, get as many cuddles as you can. don't forget to look after yourself & try not to split yourself into too many pieces being there for your other children & the baby, rest is important for you too so accept peoples offers of help! you will cope better if you can manage to sleep. Easier said than done I know.

I hope all goes well for your new arrival, please let us know how you are all doing!
and don't forget a glass or two to celebrate is allowed!
Stapo xx

I remember this too Em. Although I was over the baby hormones by the time I found myself where you are now.

It's hard, but try to enjoy the good days and not think too much about what might be around the corner. When you have appointments and checks every week it's almost impossible as it's so 'in your face', but I was like Jimjams and enjoyed just watching dd asleep. Worrying is allowed, don't try too hard.

I want to hear more about your little man - how's he feeding? Does he look like the girls?

Em - This is the link to my friend's site which I mentioned on your other thread. Her little boy has Ellis van Creveld which has some overlapping characteristics to Jeune's. She's very knowledgeable about it and as a physio has experience of other skeletal stuff.

You can contact her through the website and I know she'd be happy to offer you some support. Please don't be concerned about the amount of time he spent in hospital (I know you will be and I was torn between worrying you about it and giving the opportunity to find some support and presonal experience) He had some very specific problems....hope I made the right decision.