Finding old photos and the mumsnet campaign

When Nate was born i'll be honest, he didn't look too good.  Odd colour, unusual features, and sickly. I didn't take many photos and if i did try to take a pic i would spend ages attempting to catch Nate at a moment he looked less ill/pale/sickly/blue/unresponsive and then stick that on fb and try to pretend it was a lovely pic. I remember one consultant saying, after he'd mentioned Nate's list of unusual features that he would "grow into his face". I found my old phone the other day with lots of these photos on. It was actually very upsetting looking back at how ill Nate looked. I'm trying to retrieve the photos from the memory card and will include them on here at a later date. Just so you can see how well he looks now. But here's a few that made it to fb. 

Over time Nate has changed. He is never going to be normal but my God i love everything about him. This feeling was only heightened when a surgeon stated he needed " major cranio facial surgery on his odd head to make him look more normal" . I left thinking the only person needing cranio facial surgery would be the surgeon himself if he continued down that line of thought. 

Nate makes me feel fiercely protective. Mumsnet launched a campaign this week called "this is my child" in an attempt to dispel myths, and put some ignorant people right. I back their campaign whole heartedly. Much of the campaign centers on behavioral issues and autism and the fact many of the general public seem to think comments like " he just needs a good smack" etc are helpful. It aims to raise awareness and bust many myths about life raising a disabled child. 

Mind i've had unhelpful comments too. The most annoying being " what a shame". I hate it. Utterly hate it. Even in the modern way it's said it still boils my bodily fluids. Nate isn't a shame. He isn't " my shame" to be hidden away, and the way he is isn't sad either. He's actually pretty amazing considering everything he's been through, and how he started his life. Id like for people to know its not a pity party. Feel free to be empathetic, however. Put yourself in my shoes. Go on. Then give me a supportive smile. You don't have to say anything. In fact some days you wouldn't be able to say anything right anyway. I asked my husband what the most upsetting thing anyone had said to him was, he replied that when out with our gorgeous daughter the awful comment was about her and not Nate. A man commented on how beautiful Thea was, but that it was a shame she was ginger! WTAF! I can see why he didn't tell me at the time. This just goes to show how what many people need is a good punch to the face. ( not really... well maybe) 

Then there's the staring. *sigh*. Yes he's different have a look that's fine. It's when it gets to the stopped in their tracks gawping that I feel the need to either confront them, or run away and cry. Some strangers look and then speak " my baby was on oxygen" " it gets easier" "my niece is disabled and an absolute joy" yes, acceptable, big tick. Not acceptable usually involves the elderly with things like " can they not fix him" " what's wrong with him" " let him out the chair he needs a run around" " didn't you know before he was born" " couldn't they tell on the scans" and of course the previously mentioned " what a shame". You are a stranger to me don't ask me things like that and what do you mean by " didn't you know?". What EXACTLY are you implying hmmm? ( Obviously some of these questions are inevitable in general conversation with people you actually know and who are actually interested in the full story) However my favourite comment was from an old lady the other week who tried to hold Nate's hand and when he pulled away said " does he not like being touched? My niece is Mongolian, she doesn't like being touched either". Really didn't know how to respond. I'm presuming her niece had Down syndrome and wasn't from Mongolia????? 

Nate has always had a lot of kit. In the beginning it was oxygen via nasal cannula and and an NG tube, and now it's a feeding pump, gastrostomy and sometimes a suction machine. What hasn't changed for me is that I don't mind children asking questions. It's natural. If we want a world where disability is accepted and supported then its the kids that need to be educated. Part of my feeling on this is because of the teacher in me, and part is just me being the mother of a child with additional needs looking for inclusion and acceptance. However when I mentioned that to a mam in the school yard she told me her daughter had asked her why a lady had no legs, the lady heard and preceded to hurl abuse at the child and parent... Its different for me though. Nate doesn't understand that people are talking about him, and I want people to understand Nate so questions are fine. It is hard for other people to know the right thing to say or do a lot of the time. I get that now. I didn't at first. Just as a child with an additional need doesn't come with a handbook, other people/ family/ friends don't suddenly know the right and wrong things to say. However certain language ( and you know what i mean) should be an obvious no no for everyone. I've gone off on a tangent.  Oh yes questions are good- much better than hushing a child and dragging it away from Nate. One of Thea's friends asked her what was wrong with Nate's legs ( they were stiff and sticking out) she replied "absolutely nothing, he's Nate that's what his legs are like" which didn't really answer the question but tbh I couldn't answer it either. So yeah questions are fine if I can answer them...
 

http://www.mumsnet.com/campaigns/this-is-my-child-about-the-campaign