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

tbh sometimes it does, some days/weeks are sucky. People do tend to jump into help first few weeks then their own life gets in the way. Do you have any family support?? Its hard with consant appointments.
Im sorry your going though this, but the ladies on this board are wonderfula nd always suportive so feel free to moan away x

www.rarechromo.org/html/home.asp

Have you heard of unique? The rare chromosome disorder support group?

Sorry posted too soon. That was a bit blunt. I don't post here very often but agree with lisa that there is a lot of support here if you need it.

Welcome to MN SN board, this is a very wonderfull supportive place. Feel free to ask, vent, talk or be distracted. :)

Its rotten being nurse as well as mum sometimes isn't it? Many of us have been/are "there" too, so pop by for a chat or rant, you are among friends on here.

Its rotten being nurse as well as mum sometimes isn't it? Many of us have been/are "there" too, so pop by for a chat or rant, you are among friends on here.

Just wanted to say thank you for the welcome.

It does make a difference knowing that others understand the true highs and lows of the SN roller coaster. Wish I'd discovered the site sooner!

Financially we have all the benefits we're entitled to. We have good friends but DS' needs mean we can't give them the responsibility of babysitting. A wonderful charity called Lifetime are also assisting.

Our parents are supportive but far away and more often than not in denial, "he looks fine to me" etc.

Hence I'm very glad to have found somewhere to vent and get advice when necessary. Maybe I'll even be able to provide some support to others too!