Saturday, 24 October 2009

Hello, Mumsnetters!

I see there are a lot of you visiting after the Pick-Me-Up article discussion. (Non Mumsnetters, there was an article in the magazine about Mog's Mother, and therefore about Mog and myself). My apologies for bringing this discussion here rather than joining in the debate at Mumsnet; I try to avoid reading Mumsnet aside from threads I'm linked to. I'm sure it can be fantastically supportive, I know it can be hugely addictive, but I'm afraid it's a bit too robust for me. Still, it's an open forum which anyone can read, so I hope you don't mind me sticking my oar in.

My first post, from the original fuss, can be found here.

There's a lot of talk about the book , and about the Daily Mail article which extracted carefully edited highlights from it (and altered some chronology) along with a few photographs.

To the people talking about the hidden meaning in the photographs, are you not aware that they were posed by a photographer?

I'm not aware that Julia has ever considered herself to be brave for leaving Mog at hospital. I think the fact that she is, once again, at the centre of a storm of bile and vilification, proof enough that she is brave for speaking up about her decision. Why don't you hear from other parents i similar situations? Because they're scared of facing the same reaction. They know people will turn on them, condemn them, say unthinkably awful things to and about them. I know from a number of other families that Julia's ability to speak up about this has helped them to talk about their own situations. It's a story which needs to be told; families need to know they aren't alone in this.

I apologise in advance here as I know I'm going to upset some regular readers, and I don't want them to stop reading or commenting. But, unless you have been in the position of actually choosing not to take your child home from hospital, or of actively seeking an out-of-home placement for your child, you have NOT been in the same situation. Yes, you have shared experiences, you have carried on coping (even if just barely at times, even when it has been unbearably difficult), you have children as disabled or more disabled or less disabled than Mog; you love your child and it has not been easy. But you've not taken that decision to stop. So, respectfully, you haven't been in the same situation. Julia is open about the fact that Mog was at risk if she took her home. Instead of hiding that, she took every step necessary to keep Mog safe. I'd say that's love, wouldn't you?

There have been people querying whether Mog was really that different to any other difficult, colicky, baby. Being the one who got handed the little scrap, I'd have to say most emphatically, yes. She was very different. Her little body was stiff, always. She didn't snuggle in for cuddles but stayed awkwardly boardlike. Her eyes saw nothing, her cry was pitiful and desperate, but not as fluid as most baby cries are. She was uncomfortable, and un-comfort-able. Forget gentle rocking; she needed whole body swinging for the movement to reach her. Hard for ten minutes, exhausting for hours on end. She couldn't sit in a baby swing or rocker, she couldn't sit in a buggy, and when lying down her body twisted and crumpled. She only slept when sedated with chloral hydrate. She couldn't suck a dummy. Feeding took forever, and most of the time she'd vomit it right back up again. And she was having seizures, muscle spasms, and reflux. Not your average difficult baby

That isn't to say she was the most difficult baby ever, it isn't to say that other parents would have been as worn down as hers were. But caring for her, even without all the emotional baggage, was exhausting. I managed, because she wasn't with me all the time. She used to go home overnight once a week, sometimes twice and she'd go home for the day or for a few hours several times each week for the first few months. So I didn't have to do the neverending bits. And, as a fostercarer, I knew I could pick up the phone to social services and ask for more help at any time - and that it would be given. I'm sure that varies across the country, but that wasn't the case for Mog's parents. And of course, I wasn't mourning the baby I had hoped for - I was just simply, overwhelmingly, in love with the precious baby I had. When I looked at her, all I saw was her.

To people talking finances; I'm not prepared to go into detail about our financial arrangements. I certainly don't now and did not as a foster carer get £2K a month to care for Mog. That said, I do receive allowances and they do amount to more than income support. We have enough money to meet all our needs, and most of our wants. That's good enough for me; I don't have to worry before I spend, so financial matters don't give me extra stress (unless it's letters from the tax man). You have no idea where the money from the book and the articles goes, and I've no idea where the idea that Mog's parents are rich comes from.

There seems to be some interest over Mog's legal status and how that came about. Mog is mine through Special Guardianship; this gives me the legal rights of any other parent (except that without a court order or permission of the other parents I can't consent to her marrying under 18, can't take her out of the country for more than 3 months, and can't change her name. None of which are things I'm planning to do). It makes us all Mog's parents, it makes us a partnership. I'm the one who is here day by day, so I make most of the decisions. But I have other people who know and love Mog who can help with those decisions. It means Mog isn't losing anything but gains our family in addition to her birth family. I'm not sure why losing legal ties to the rest of her family through adoption is something so many people seem to think would be good for her? She has three sets of grandparents, a huge circle of uncles and aunts and cousins spread across the world. She has people from her birth family and from our family who drop in to see her and take an interest in her welfare. I fail to see how this is a bad thing.

Mog lives with me, her other parents live a few miles away. Our contact arrangements are flexible - she spends days with them quite often, we sometimes entertain the troops here (our ballpool is always popular), and sometimes we do things together. She goes with them to family events just as she comes with us to our family things. They help me out regularly by taking her from Helen House so that I don't have to be there for eleven in the morning, or by having her for the afternoon so I can get to a party with Little Fish. I'm sure they would have offered to have her for some time this last week whilst I've been ill - except that the 'flu has been in their house too. We did have plans with some of her other family members for this week, but again, 'flu stopped play.

Of course not every child needs an arrangement like ours. But the arrangement we have really and truly is the very best arrangement for Mog. And that's what this is about really - one small child growing up knowing she is loved, appreciated, and cared for.

I hope I haven't upset anyone. Reading the comments (and I'll step away from the Mumsnet thread now) and seeing how harshly my daughter's other mother is judged, is upsetting. Reading people's assumptions about myself is just strange and a little amusing. Thanks for all the compliments! I'm pleased this blog reflects our lives and gives you and insight into the life Mog lives these days. I don't tend to talk very often on it about her family visits; I try to stick to our lives rather than telling other people's stories. But I did think this was important.

Happy reading,


Tina said...

Dont see how you could have uoset anyone Tia. Mog is truly loved and her other Mother is someone I for one admire And you are so right that telling their story has helped others..
Sending go away flu bugs hopes and prayers!
Tina and gang

Doorless said...

Having had adopted three children who are SN and not as severely affected early on as Mog I can tell you that Her mother made a very good decision. It is one I wish my girls B'P's would have made. All suffered horrible abuse and neglect at the hands of their Birth families. My oldest one lived 10 years in neglect and abuse until one day her B' mom got brave enough to go to social services and demand she be removed from her home. B'mom had been told the child would die by age three! She kept waiting for that to happen. Even with all the reports of neglect and abuse they would not have removed her had I not beeen willing to adopt her!
All three suffered sexual abuse in addition to physical abuse and neglect. Two of my children were so severely mentally affected they were animal like. Amber who would have been fairly normal had she been given up at an early age was finally able to show us she remembered the horrific abuse she suffered and was able to realize she would never suffer like that again. She was functioning happily and making great strides until an untimly death.
Until you walk in those shoes of birth Parents who go through the mental anguish of the if onlys and did I do something to cause this you have no right to condemn them.
I chose to parent these girls and I had had medical training as a nurse so I knew what to expect. Except it is different to do it 24/7 and not in 12 hour or 8 hour shifts.
I think it commendable that Mog's B' parents stay in her life and still do family things with her. None of my girls parents did that. They were glad to be rid of them and had the attitude a lot of society does that there is no value in children who will be totally dependent all their lives and a drain on society! I could go on and on but I won't!

Anonymous said...

well said- sorry you felt the need to.

sarah bess said...

"she is the mother I can imagine being if it weren't for the loss." I always used to cringe when I heard people talk about the grief and devastation they experience when a child is born with disabilities. I feel for the child and for other readers who themselves have disabilities. This is still true, but in reading this I feel less able to judge somehow, having never been on that side of it before and only knowing my children on this side of the delivery room. I admire her honesty ("I wished she were dead"), although I really hate that that was so. It's complex.

Anonymous said...

Oh Tia, It seems a shame that this is coming up all over again. But I guess if it helps someone to think things through and realize how blest not only Mog is but also you and her birthparents are (I'm assuming you'll agree that you are blest to have her in your life-I feel that way about our special kids-)-it will be for a good reason.
Sorry you have to go through all this again. And I agree we can not know what they are going through unless we've been in their shoes--sometimes it is easy to question/judge even-- but it is not our place--we should be thankful that they are putting their child ahead of what others will/ do think of them.
-So I hope that those who are reading your comments will understand and be thankful too for all that you , Mog, and her birthparents have together.

Sara x said...

I brought the book with reservation a while ago now, but when i read it i had alot of respect for Julia, to admit you cant cope is a lot braver than trying to and damaging your child in the process. Yes we could get high and mighty and say that i have had it hard and never gave my child up but thats crap. We are all different. We read of parents disabled children who neglect or punish their children because they cant or wont cope. Julia made a brave decsion and because of that bravery Mog is surrounded by love and people who care for her. I hope people can see this. Well said xxx

Anonymous said...

I think this will pop up every time there's more publicity. And will bring up opposing views. It is something that is close to my heart as Celyn is very like mog (and as a baby, ys, the screaming, stiffness etc etc) and my MIL said 'have her adopted so you can have a 'proper' baby.
She only saw the impairment, not the child. She was not welcome anymore. And she quoted JH's book at me over the years.

Tia said...

I can see how that would get to be an issue. I'm so sorry you have to put up with that, and so glad that C was born to you and not to them. You know how wonderful she is.

I hope her seizures are settling down btw.

Jacqui said...

I hate when people come up to you and tell you that special children are only born to special parents. What a load of cr@p. I think the ability to expose yourself to so much criticism must be respected. We each have to make a decision that we can live with.

Anonymous said...

Mog is so very lucky to have such sensible adults in her life! I know my own limitations - I have no illusions that I would have risen to the challenge of caring for a child with significant special needs - goodness knows, I have enough difficulty being a good mum to two kids without particularly 'special' needs. I hope your example will allow more families to find the kind of arrangements you have, so children stay safe and well cared for, but don't have to lose contact with their birth families - to see that it doesn't have to be all or nothing.

Riven said...

fingers crossed seizures still under control with the ketogenic diet. Good thing too as her rescue med is now paraldehyde. We've been eyeing the long rubber tube with some horror!

Amanda said...

What a lovely blog Tia (yes I am a Mumsnetter but try to stay away from inflammatory discussions where possible). You are so right - nobody knows or understands unless they have been there too. If Julia's books and articles help just one person feel better about making a difficult decision for their child then they serve a good purpose. It's not for anyone else to judge when not in full possession of the facts.

You mean there's more??? said...

Oh for crying out loud.

Not that bloody shower on Mumsnet again.

I am not going to read what they are saying - cannot be arsed, they are brave people trying to live their lives their way.

It is a shame their minds are so closed that they cannot accept that others have made other choices.

Set Mog on them, she will sort them out!



Blog Widget by LinkWithin