First post - the ups & downs of a very special boy

[Smallmonkfish]

Hey all,

This is my first post. My son was born in March after a complex pregnancy, unable to swallow and with breathing difficulties.

He was eventually diagnosed with a microdeletion of a chromosome, but nobody knows what the missing genes do, so his future is very unclear.

After 4 months he was released from hospital to us and we took on his cares. As well as support with breathing over night, he can only feed via a tube into his stomach.

I love him dearly and some days are brilliant, but some days I feel more nurse than mum, causing him to cry with countless daily procedures.

We got a lot of support at first, but I feel that as the months have gone on, people think we're doing okay so we're not a priority now, yet for me, each day gets tougher, with more cares, yet another medical appointment and an unknown future. Does it get better? Sorry, having a bad day! X

Just wanted to say hello
All sorts of lovely people here to talk with...and I know what you mean about 'people think we're doing OK'. Often we're not. Hope we can listen and 'walk with you'...

(Mine's 18 now with different disabilities to yours, but I'm disabled and so's hubby so the whole medical-appointment-what-does-the-future-hold thing doesn't really stop for us, no. But life's been worth living differently, because I've had to learn to appreciate the small things and my lovely friends and family, I think...)

Not every day will be a bad day. Life gets easier usually. Can your HV find out about support in your area. Do you get financial support. I think your DS can get full DLA and mobility if you have heavy equipment to transport. There are lots of mums in your situation and meeting them will help support you. These little ones are full of surprises and I am constantly amazed at stories from other mums who were told their LOs wouldnt walk, talk etc and yet theyre running around talking 19 to the dozen! The first year is the most rubbishy usually so hope you see a bit more light soon. xxx