Still Standing then Knocked Still LOWER?

I’m appalled that after all we have gone through that either of us should feel in some way – in any way FRAUDULENT. It seems to me that those with no experience of sorrow are lacking for they are the ones who wound us time and time again and they are the ones with the privilege of placing all those perspectives of perfection and normality on our backs. And yet…next to you who have held your babies and I who know I will never, never be allowed, I am in that club and yet somehow I still feel a fraud because you HELD them and because I was told that should I ever hold her she “MIGHT” be taken into care. An unbearable exclusive club of ‘not good enough’ who even parents may think, “Oh well in HER case it’s better”.

I know what you mean, when you describe those who even with the experience of miscarriage behind them or of a long hard road to get pregnant or even multiple miscarriages and the condition you have who so soon forget that pain and whose statuses become a litany of “Woe is me another sleepless night” or “I have an essay to write and the baby won’t settle”. Yes, that essay you couldn’t get written when you were grieving yet another miscarriage?

There IS a woman I know who does not do this. Who is fully aware of her privilege as a mother. A mother whose friends probably pity her and who I have seen go from a drained depressed and silent woman when all around were happy and on a holiday (and I didn’t know why) to a mother who looks as though she has become just who she was supposed to be. Moreover she is also far far from the club of ‘woe is me my child is disabled’ as it is possible to get because after 2 stillbirths and numerous miscarriages Nathan is breathing and talking despite the fact that the Doctors (as ever) claimed he wouldn’t (try stopping him). Other people probably think his slurred speech and his chair are a tragedy though heaven help them, no one even mentions him. one look at Jude and you know that’s the most ungrateful thing you could think.

Then there was a recent “Still Standing” post and I feel such an outsider amongst people who grieve a loss but then go on to gripe if their baby is not ‘perfect’. I had the temerity as a baby to survive when what you are supposed to do is be no trouble to anyone so that they can ‘get over it’ and move on. We are the club who thank god DO NOT. Who refuse. And as both an empty armed mother AND one of those people that people regret the existence of as a reminder that parenthood sometimes ends with imperfect situations< I want to validate that this isn’t the club you WANTED but I’m in no position as I don’t know that I even COUNT in the club of unwanted and awkward. I’m trying desperately to even feel I still belong to this unwanted club because of all the validation that it was ‘all for the best’ because I would have been a terrible mother because disabled people are automatically terrible and a tragedy that we are less mothers than burdens to our families and the state that ‘in our case’ terminations are ‘better’ that switching off our machines is OK, terminating our pregnancies is OK ….It’s as taboo as it gets and anything more on the subject only alienates the few friends who understand even a little. It’s a taboo group amongst taboo groups. It’s as lonely as it gets xxx

Even ‘Still Standing‘ pulled my guts out through my mouth with the WAY it supported that recent family who posted about the end of their daughter’s life. The language of ‘validated loss’ is what I would like to call this phenomenon and i see it all the time and I don’t know whether to be glad for the parents who are presented with decisions and support or wrenched for them in case like me that well meaning “Oh well, don’t feel guilty now they won’t suffer” cuts as deep as it does in me. One of my academic friends who is currently pregnant was defending their decision on the ‘pain and suffering’ angle with the added power to her adjectives that a medical background gives and I was left wondering how the hell you split your heart between natural grief and the scientific and medical community feeding your family the validation that YOU can move on because THIS child would only have suffered….

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