Both myself and my husband come from large families, I am one of five and my husband is one of four. We are pretty close and to be honest I don’t go a day without speaking to my sisters and my Mum !

After our first scan with Matthew, I told my mum and my mother in law and we waited to tell everyone else until we found out more. Obviously everyone was so supportive and came with me on my scans and have been amazing through everything.

When Matthew came everybody rallied round us and I really felt such support. I have never felt truly so supported and at the same time so alone. It is a strange feeling to have.

We have so many appointments and decisions to make and so many unknowns  it is the loneliest place you will ever find yourself. People don’t understand, and everyone has their own opinions and somewhere in all the noise and support you have to try and find yourself in this most crazy of moments.

I sound so ungrateful and really I’m not, we could not have survived the last few months without the love and support of our families. It’s so easy to get lost in this world of labels and diagnosis that I have found that the most important thing for Matthew is that his ‘stuff’ is not what defines him. He is social and funny, so lovable and cuddly. He is so so smart and can get so cross ! But most of all he’s just Matthew. Our greatest fear is that we loose sight of that, and that people around us loose sight of this amazing little boy.

Support and love are amazing and without it life is tough. Without my husband I would absolutely have cracked up by now, mostly because I am a worrier and he grounds me. I like to be proactive and prepare for what might be, and the ‘might be’ is the loneliest place on earth.

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