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  • Sharon Tootill 8:58 am on May 7, 2014 Permalink | Reply
    Tags: , birth, , , , , , TTTS,   

    Expectations 

    Every now and then, a turn of events or set of circumstances, or even a few words will jump up unexpectedly and knock you sideways.

    I’ve had a few of those – my Dad’s death after I thought I had convinced him to live, the moment I saw my house after our tenants had completely trashed it, and the moment I knew my twins were dead.

    My other miscarriages were all around the 8-10 week mark, discovered at the 12 week scan to have passed away silently a few weeks before.

    But I carried my twins to 14 weeks. At the 12 week scan it was clear that they had ‘just’ died. I had felt a lot of pain a few days prior to the scan, but had subsequently felt movement so I assumed everything was ok. (In later pregnancies, you feel the ‘quickening’ much earlier than first pregnancies.) I knew before the scan that it was twins because I felt so much movement.

    But it wasn’t ok. My twins were suffering from Twin-to-Twin Transfusion syndrome – a not uncommon complication of identical twin pregnancies. Some survive with intervention, many do not.

    I refused to have the D&C, (Dilation and Curettage) or the EPRC (Evacuation of Retained Products of Conception) that they so tastefully call it now, and which the sonographer tactlessly suggested I have right away, preferring to let nature take its course.

    I needed more than an afternoon to process this reality – that the babies I had waited and prayed and longed for so much for seven years were not going to be mine.

    I delivered my babies at home – two perfectly formed tiny little girls, Rachel and Leah.

    Rachel was much larger than Leah, having been receiving more blood and nutrients in the twin-to-twin transfusion process. But they were both perfectly formed and still.

    Fast forward two more years, and I am now over 40, and I conceive again, a surprise ‘last chance’ baby.

    But I lost this ‘rainbow’ baby too.

    Grief in our society is not really tolerated. It is swept away and hidden in the same way that death is quickly swept away and hidden. If you are grieving for more than a month, or three months at the outside, you can expect to be offered anti-depressants. The idea that you would be in ‘mourning’ for the traditional year or more is frankly unconscionable today.

    But I am still grieving 3 and 4 years later, and that is normal and natural. I am grieving for the babies that I lost but I am also grieving for the lost future I thought I would have. Life may look bright, but it’s not the shade of brightness I had envisaged.

    As much as I would still love to have another baby, the chances now are pretty much down to zero – unless God decides to intervene.

    Can you imagine how it feels to end your family on recurrent loss? Do you think it matters if you have another child or two, or six or ten?

    I still, after all this time, have to – for my own sanity and equilibrium – avoid pregnant women and babies (and especially twins) at all cost.

    Babyloss mums, it should be noted, routinely ‘hide’ friends on facebook who announce pregnancies or post baby photos.

    It is a necessity, because until some healing has taken place, it is a gaping, weeping wound that won’t heal over, and which is easily re-opened.

    I knew that my friend’s wife was expecting a baby and was due around this time. I’ve known him for almost 30 years, and her for around 20. I decided I would be brave and have a look, only to find that she had ‘unfriended’ and ‘blocked’ me on facebook. I sent a message to my friend, and he announced their joy and I wished them well. I thought I was very brave, facing my fears, but now I dearly wish I hadn’t.

    I then received messages from my friend telling me that his wife had blocked me because she was disgusted that I hadn’t ‘liked’ or commented on her facebook page during her pregnancy. It was apparently a ‘difficult pregnancy’ and she had to ‘dig deep’ to get through it.

    How ‘deep’ do you think you need to ‘dig’ when your babies die?

    She was apparently very disappointed in me and had “expected more” of me after being friends for so long.

    Does it really need to be said that to expect a babyloss mum to support you through your pregnancy is wholly inappropriate and unreasonable?

    Really?

    I guess it does.

    The conversations I’ve had with other babyloss mums tell me that I am not the only one who has received insensitive and thoughtless comments from unthinking friends who are unable to see past their own need.

    I’m sorry I wasn’t able to ‘be there’ for my friend or his wife, but I was totally the wrong person to look to.

    If you have a twisted ankle, you don’t go to somebody with a permanently broken back for help with walking. I know it’s not a perfect analogy, but it bears thinking about. Your twisted ankle will heal and you will walk again. I may never have that joy.

    My 12 year old son heard me crying last night and asked why. I am so very grateful that I have surviving children. I am very blessed, I know that. But I have also lost five babies. As Rick Boyer said in his book on large families, ‘Yes, they’re all ours’,

    “which of your children would you not mind losing?”

    My young son’s reaction was so insightful, he said “it must feel like they’re teasing you.” I hadn’t thought about it that way, but yes it does a little bit. I know that there is probably no malice involved – it’s just insensitivity. From their perspective, her need for support is more important than my inability to give it. But from my perspective, they are flaunting their joy in the face of my grief.

    The difficulties of a pregnancy that leads to a live birth are very, very different from the difficulties of a pregnancy that leads to a loss. They cannot be compared.

    And you cannot expect sympathy for your pregnancy (or breastfeeding, or child-raising) difficulties from mothers who would give anything to experience those difficulties again for the chance of holding – and keeping – their baby.

    I am sad to have lost my friend. I am sure he will make a good father. I wish them well. But even if there was no animosity towards me, I wouldn’t be able to be around them anymore. I truly wish it were possible, I would have loved to share their joy; but it isn’t possible. It’s just too raw and too painful, and sadly that is the reality for babyloss mums.

    It’s cruel, it is an additional loss and grief on top of the original loss and grief.

    Please try to understand that, and be grown up enough not to ‘block’ and punish them with insensitive words when they don’t live up to your expectations.

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  • Sharon Tootill 4:23 pm on January 8, 2014 Permalink | Reply
    Tags: , , , Devon, , , , , , , moving, , , TTTS,   

    Review of the Decade so far! 

    Shalom!

    It has been a very long time since I posted (for those receiving this post on facebook, you can find my previous blog posts on http://messianickah.wordpress.com/ )

    In the three or more years since I posted, a great deal has happened to us. Firstly we have lost three babies – identical twins at 14 weeks due to TTTS (twin-to-twin transfusion syndrome) in 2010 and then a singleton in early 2012.

    My Dad died after a long illness in February 2011.

    The very next weekend we moved from the city to a very remote location in Devon where we had no internet access (even dial-up wouldn’t function due to the very ancient split-line technology!) We have now moved again to a slightly less remote location in Cornwall. The timing of this original move was extremely painful, and a terrible wrench for my mum who was left behind.

    In January 2012  our middle son was diagnosed with Type1 auto-immune Diabetes, a week after my last miscarriage. Again, the timing of this was extremely hard. Type1 Diabetes is often called Juvenile Diabetes, since it is often (though not always) diagnosed in childhood. This was a shock but not entirely a surprise РI had suspected diabetes for a very long time indeed, although I did not know the difference between types 1 and 2. More on that later, as it is a BIG subject and has utterly changed our lives as a family.

    My eldest son has now turned 18 and left homeschool for Sixth Form college at the school where his dad works, which has made for a much easier and pleasant transition. For those of us left at home though it is a challenge to adjust after having him at home with us for almost 15 years! It is truly a life-change for me as well as for him.

    The eldest two joined Scouts and Explorers (the younger two tried cubs and Scouts but couldn’t get on with it). I also started as a helper with Beaver Scouts, but had to give it up when I was without transport. I hope to take it up again this year.

    We were sadly forced to sell our house at a loss in 2012 after our tenants did a very good job of destroying the place (and we, being green and naive at the time had not thought to obtain landlord’s insurance, or even a deposit – the tenants were people we knew who were down on their luck and we thought we would do them a favour, which makes what they did all the more heartbreaking).

    So we are in rental accommodation again with no hope at this moment of buying a house again, sadly (unless our situation changes). The one good thing about that is that rental prices where we are now are fairly reasonable and we have a much bigger house than we originally left.

    We have been in this house now for just over two months, and we are still in a mess! I am slowly going through everything trying to streamline and adjust to our new circumstances (with no garage or shed, and not allowed to use the loft space, which does nullify the extra space somewhat).

    In between leaving our own home and coming here, we actually moved in effect five times: to an enormous rental house in a village in Devon, but which we had to leave after flooding. Secondly we lived for almost three years in a much-to0-small bungalow in another very remote village in Devon, but were flooded out after just a month in August 2011 and had to stay in a cottage temporarily. We moved back into the bungalow in October 2011. The bungalow was located in the most spectacularly beautiful countryside, with farmland all around. Sadly the experience was marred by cluster flies that we couldn’t get rid of, and crashing my car which made the whole of 2012 a very difficult year for me, with a 7 mile walk to the bus stop, we didn’t get out much!

    Our new location is less remote, being 5 miles outside town instead of 15 miles out. At a pinch, if I were without transport again,’ it would be conceivably possible to walk to the local post office which is a couple of villages away, or even into town if I needed to.

    However, after more than 10 years with a non-descript semi-diagnosis of CFS (‘chronic fatigue syndrome’) I finally obtained a more firm diagnosis of ME (‘Myalgic Encephalomyelitis’) again, another huge subject which merits further discussion. It’s not a diagnosis I am pleased to receive, and I still hope that it is wrong and have spent the last few months persuading my new GP to run tests to eliminate every possible other thing it could be, without any helpful results so far.

    I have not found a suitable fellowship since we moved, and believe me I have looked very hard indeed. There used to be a Messianic Fellowship in Devon some years ago but it is long gone now. I have tried to make friendly links with Christians in the area though, and visiting several different Salvation Army corps in Devon and Cornwall. Sadly none of them are very close by, but I tend to be most comfortable with The Salvation Army as it is an active, working church. I have tried without success as well to find believers friendly to Israel who would be interested in forming a prayer group, but I’m sure that will come about in the L-RD’s time.

    So all in all, this decade has been a very hard one so far, but I am confident that with this move, things are looking up, and I am looking forward to a year full of blessing.

     
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