The waiting game

Saturday, June 2, 2012

We've been given little tid bits of information about what might have killed Maxie all week.  The information we have received so far is minimal, but scary.  The geneticists use words like "uncharted territory" and "likely cause".  What I DO know is that the outcome of the tests that I was really praying for (that there would be no genetic cause), is likely not the outcome that I will get.  Obviously, if there was a genetic cause for Maxie's death, Baby M has a chance of inheriting the same lethal genes - this is why I would have rather paid for a test that yielded no answers than for a test that did.  So now it looks like our chances of a healthy baby that lives goes from 1 in 2,000 to 1 in 4.  And, I know that  75% chance of survival is something I should celebrate (though I am pretty sure you wouldn't), but I know a secret you don't know - THE UNIVERSE IS UNJUST.  You still think there is justice and that is sweet and tender.  I learned, when my baby died, that there is no justice.  But, my family keeps saying "We don't have all of the information.  We need to wait to find out what exactly they have learned".  They are right.  I tend to let my fears dictate my mood these days.  I know that losing Baby M is not an option for us....we just couldn't take it.  Really.  So, now I am playing the waiting game - this effing horrible game that I am playing on top of the grieving game and the depression game and the angry game.  I am waiting for the geneticists to try and convey to us all that they have learned and then come up with a plan of action to give Baby M his best shot.  If I thought I was already living my worst nightmare, I wasn't.  It seems to get worse all of the time....and all the while, I am just missing my little boy.  I miss him so much it feels like my heart will just stop beating (I should be so lucky).  I miss his little lips and his big beautiful eyes and his funny personality.  There is no way I would live through this again.  Absolutely no way.


NikaM said...

My heart hurts for you and all that you're going through.

Susan Ireland said...

This is really shit news. I'm sorry. I think all bereaved parents worry it will happen again. I understand it is common for parents who lose children to rare cancers, to turn back up with their other children to their specialist to get it confirmed that it has not struck them too. I am TERRIFIED that Madeleine will get chicken pox and die like her sister. I am counting the days till I can get her immunised, but as there is no immunisation policy for it here in the UK, it is rife - so the chances of her getting it before she is old enough for the vacinne are quite real. I know she is very unlikely to get serious complications like Catherine did - but I am still scared.

I'm saying this, because it's important to realise that all bereaved mums worry, and find it difficult to weigh up risks.

I know that is very different to having to deal with a real high risk. I'm sorry you're having to deal with this. It is horribly unfair. Being bereaved and being pregnant in early bereavement is really bad enough. I hope once you get all the information, it isn't as bad as you fear, and that the medics will have a plan that gives you some comfort.

You just need to keep going - you are already living with more than most people could imagine. Much love to you x said...

Im sorry honey. It hurts just to think of it. Many huggs to you and Ted.


jessica said...

I'm so, so sorry. The universe is totally unjust. It is so unfair that you have to deal with this whilst trying to survive the loss of sweet Maxie. It really is a living nightmare and I am so sorry that you find yourself in the middle of it. I hope and pray that the geneticists can come up with a plan of action for Baby M and that you get some relief from your fears. I wish I could take this all away for you. I love you very much. Sending all of my love, strength and prayers to you, Teddy, Maxie and Baby M.

robyn said...

i am so sorry abby. it is unjust that you have to go through this on top of the pain that you already live with on a daily basis. i will think nothing but good thoughts for you all.

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