Our beautiful baby daughter Anabelle was born sleeping June 2010.
Blessed with the screaming arrivals of our gorgeous rainbow sons,
Alexander October 2011, Zachary November 2013 and Lucas July 2016.

After Anabelle - Raising Rainbows
Heartbreak. Joy. Death. Life. But most of all Love.

Thursday, 28 April 2011

A Different Child

A different child,
people notice, 
there's a special glow around you.
surrounded by love, 
never doubting you are wanted;
only look at the pride and joy
in your mother and father's eyes.

and if sometimes,
between the smiles,
theres a trace of tears,
one day
you'll understand.
You'll understand
there was once another child.
A different child
who was in their hopes and dreams.
That child will never outgrow the baby clothes
That child will never keep them up at night. 

Infact, that child will never be any trouble at all.
except sometimes, in a silent moment, 
when mother and father miss so much 
that different child.
may hope and love wrap you warmly
and may you learn the lesson forever
how infinitely precious
how infinitely fragile
is this life on earth.

One day, as a young man or woman
you may see another mother's tears,
another father's silent grief.
then you, and you alone 
will understand
and offer the greatest comfort.

when all hope seems lost,
you will tell them 
with great compassion,
"I know how you feel. I'm only here because my mother tried again."

By: Pandora Diane Waldron
 
Tuesday, 26 April 2011

Capture a Moment...Introducing

... Anabelle's little brother or sister. Jon and I are excited (but oh so scared) to introduce our second child.  Please meet little Baby Bow - so named as in short for 'Rainbow' because we believe this little one is putting a big splash of colour in our lives through the storm. 



This moment of reveal has taken a lot of building up to. This is the third time I've started to announce our pregnancy; twice before I've chickened out. I'm not sure why. Everything is so much bigger this time; emotionally we're incredibly fragile around the edges.    

Today we had our second scan, our 12 week scan. (We had an early scan at 7 weeks as well - when Bow appeared like a tiny little blob). This morning was special; Bow is a very wriggly baby, arms and legs moving everywhere and rolypoly's galore. This little one barely stayed still long enough for the consultant to measure, date and take photographs of him or her! Even this our second time around I was amazed by just how much you could see from a 12 week grown baby and just how much movement little Bow can already do. Anabelle was very quiet in her dating scan, she gave us a wave but for the most part stayed still and behaved for the sonographer; Bow on the other hand appeared to be having a whale of a time - very much awake and playing around. 

We've reached the stage in this pregnancy that the majority of people breathe a sigh of relief and are reassured that it means everything will be ok. For us this 12 week milestone means very little, other than we've managed to get this far. If anything it represents the very beginning of the biggest hurdles yet to come.  I don't think either of us dare to believe this baby will really be coming home but we know we already love little Bow very much, just like we did already with Belle. 

We found out we were expecting Bow on the 28th February. The most ironic thing of all is that morning I'd written a blog about my post baby body; hours later we discovered I was pregnant again - not so post baby body than next baby body now!  I'm already sporting a little bump (or not so little!) and have broken out the maternity clothes again in the last ten days. I'm getting increasingly larger and far more rounded than I was at 12 weeks with Anabelle, and I thought I was big for 12 weeks then too! 

The last two months already have been fraught with emotional ups and downs. We are of course very happy about this pregnancy, but there is a whole lot of other feelings thrown into the mix there too. Swinging between feeling euphoric to an overwhelming fear that our second baby will die too; and knowing there is nothing we can do to stop it happening. The most sickening feeling of all is that I do not trust my body to keep my baby safe. I feel immensely out of control and know this is going to be a long journey with a currently unknown ending. 

All we can but do is try and hold onto the shreds of hope and faith as they appear and enjoy the special moments like today seeing our little Bow's face for the first time. 


Monday, 25 April 2011

Diamonds

Four years and one day ago Jon gave me a diamond, or to be more precise a diamond ring. The first of four diamonds he's given me since we've been together.  Yesterday was our fifth anniversary; five years together, four of them engaged and one year nine months of them married. 

I'll never forget the night Jon proposed. We'd been officially together a year and dating eight weeks longer than that, we'd recently bought our first home and been living in it for a month and one day. After all the expense of moving in we didn't have a great deal of money for going out to celebrate our first official anniversary. Instead Jon ran me a bubble bath and cooked spaghetti bolognese for our tea. Tea finished and then came pudding - out from the kitchen he bought a bowl covered by a plate and put it infront of me. While I was removing the plate to reveal the diamond ring he got down on one knee and asked me to marry him. I was in my pyjamas and my hair was soaking wet! The last thing I expected was to be proposed to. Beautifully simple and forever memorable. 

The day Anabelle was born Jon gave me three more diamonds. This time set into a necklace. 

The week before Anabelle died Jon had bought the necklace ready to give me on her birthday. After the threat of a premature labour he'd thought he'd better get something sooner rather than later just incase her birth was going to be soon than he'd originally anticipated. Her birthday arrived days after the necklace did; never did we expect I'd be given it in the circumstances that were. 

Anabelle's necklace is beautiful; chosen by Jon because he felt it represented our family, three little diamonds. The biggest diamond for Daddy, the middle diamond for Mummy and the tiny little diamond for our beautiful baby Belle.  

Who knew five years ago at the start of our relationship what we would be living now. 


Saturday, 23 April 2011

Easter Saturday

This afternoon we attended the baby remembrance service at the hospital where Anabelle was born. They hold it annually on Easter Saturday. Although the service itself was lovely and sensitively put together I couldn't help thinking the whole time "I wish we didn't have to attend these services."  Of course, we don't have to attend; no-one is forcing us too, but to not attend would be to feel like we were somehow letting Anabelle down. It is important that we went to a service today especially for all the babies who had been born sleeping or died at the hospital. 

We arrived and was greeted by the patient liaison lady. I'd remembered her from the day Anabelle was born; she had taken us down to the registry office in the hospital building to register Anabelle's birth.  She told us how they had seen the article in the Wales on Sunday last weekend, thanked us for the kind things we had said about the hospital and that the midwives had cut it out and put it up on the wall on labour ward. 

We then saw Anabelle's name written in the baby book of remembrance that is kept in the chapel of the hospital. 




Then the service started.  A room full of bereaved parents, grandparents, siblings. People all who had lost their baby in the same place that we had. 

The chaplain read a passage of the Bible, said prayers, led hymns and we lit candles. Towards the end of the service our babies names were read out; Anabelle Violet leading the way! The importance of our babies existence was not lost on him. A lady spoke for a few minutes comparing the continuation of our lives to the resurrection of Jesus on Easter Sunday. How amazing it is that throughout the worst possible grief we have continued to live and love in our lives. I wasn't sure about all of it but this stuck with me; our babies were conceived in love, grew surrounded by love and died enfolded in love. That I know to be so true for Anabelle. 

Jon says these services make him angry. He doesn't understand how we're supposed to find comfort in being told Anabelle is in God's care and that God understands our pain. I suppose he feels that God caused our pain. Even though I believe Anabelle is in God's care and I do believe God understands our pain, I must admit I don't understand it either. I somehow get comfort out of these services; the Sands service we attended at Christmas and the hospital service today, but I still don't understand why us? Why did God need Anabelle? In his ultimate big plan what was achieved by taking her to heaven before she was even born? 

Amongst this fledgling faith I am so mixed up, sometimes angry too and confused. I don't know how I am supposed to fully make my peace with God with these thoughts and questions that will remain unanswered; in a life I will never fully understand. How do I let something this huge go? *Sigh* 

We cannot care for you the way we wanted to,
or cradle you or listen to your cry,
yet separated as we are in sadness,
we know our love for you will never die.
We cannot watch you growing into childhood,
and find that new uniqueness every day,
but, special as you would have been among us,
your memory in our grieving hearts will always stay.

We cannot know, the joy or the potential,
which growing years would open and reveal,
but for that time when we shall meet in heaven,
we wait in faith, and trust out pain will heal.
Lord in your arms which cradle all creation,
we rest and place our babies in your care,
believing that they now, alive in paradise,
will wait for us 'till one day we shall meet them there. 


Friday, 22 April 2011

Enders' of a Saga

"There is nothing that makes you fight harder, 
love harder, hurt harder than losing a kid, 
and I will do anything, anything...."  Kat Slater, Eastenders. 

I made myself do it. I'd seen in the TV magazine that the Eastenders baby swapping saga was being bought to a close over the last couple of episodes. So after convincing myself that I needed to see it I've just sat and cried silently through two episodes. Last Friday's and Monday's. 

As I anticipated there was Ronnie being portrayed as complete unhinged loon. But all credit to the acting of Jessie Wallace (Kat). I thought the acting through of grief and bewilderment in those two episodes was excellent and very much spot on. 

Four things in particular stuck out to me. 

1. The conversation between Jean and Kat in the Vic's kitchen. Or at least what Jean had to say. "One day these sad thoughts will be so small you will hardly notice they are there."  Really Eastenders? Really?  I thought that one small scene highlighted the ignorance in our mainstream society, or the need to brush our grief under a carpet. 

No world, despite the education you are getting from the esteemed Eastenders; we as bereaved mummy's are never hardly going to notice our 'sad thoughts' - these thoughts are our children's memory. We will never hardly notice their absence from our families. That there should be one baby instead of none, two babies instead of one, three babies instead of two that the outside world notices and sees. Our babies deaths and absence are a big gaping hole in our lives that can absolutely never be filled, ever.  

2. The grief and bewilderment of Kat and Alfie in the car park outside the hospital. The utter disbelief that after everything that had lived through, holding their dead child in their arms, burying him and counting the 37 longest steps of their life down the aisle of the church. The absolute truth of the anguish and pain of seeing other women still having their babies with them while 'hers' had been placed in a coffin. Having what she/we no longer have. The rawness of reliving those memories in their heads amidst being told that they'd lived all of it for someone else's baby. 

3. The words that Kat was so desperately saying to the social worker before she was reunited with her son. That nothing else can make you fight harder, love harder or hurt harder than the loss of your child and that she would do anything.... There is so much truth in that one sentence. The love and hurt we feel for and surrounding Anabelle is beyond any words we could ever put down on paper. Our beautiful girl who never got the chance to grow and us the chance to be the Mummy and Daddy we wanted to be. The fight we would give to do anything at all, if there was even the slightest chance somehow Belle could come back to earth and come back to us. There is nothing we would not do for our baby if only it were possible. 

4.  and finally, the re-welcoming of their baby into their lives. The confusion but ultimately joy that it had all been a nightmare and had never really happened at all. That their son was alive and they would be allowed to love him and watch him grow up after all. Oh how I wish so hard that somebody would turn around and say to us "but here Anabelle is, she was never really gone at all." But in real life it doesn't work out that way. 

This story line was never going to end perfectly, how could it - the damage was done as soon as they conceived the idea to air it in the first place. But now, as well as hurt caused by portraying a bereaved mother as a crazy person in the first place the hurt is now compounded by the happily ever after of the reunion. As pleased as I am that in soap land the baby is back where he always belonged, here in real life thousands upon thousands of families live a life where that can never happen. A storyline that could've done an enormous amount of raising awareness just ended as it started; sensationalised and unrealistic. 

Our babies, my baby, is never coming home. 
Thursday, 21 April 2011

Double Figures

Well this was unexpected.  I thought I had a handle on the 21st of the month now, but apparently not today. I feel wobbly and weepy. The last time I felt like this about the 21st I think we had arrived at Anabelle's 6th month birthday, Christmas and New Year all in one go. Today it is 10 months. 

10 months. Double figures. 

Double figures and that is the significance; and fast approaching a year and her 1st birthday. There is just one more 21st before the big one.  How on earth has time moved so quickly it is almost a year? In some ways it feels like we've been living without her forever, in some ways she died just yesterday. Why couldn't our beautiful daughter come home like she was supposed to? 

Today I am tired and emotionally drained before I've even done anything. 
Tuesday, 19 April 2011

Capture a Moment

My friend Ally at Cancer and Baby Equals Chaos has set a challenge tonight. Each Tuesday she would like people in the blogging world to post a photograph of a moment they have captured around them during the week before. I've signed up to join in. What a positive way to focus on the happier things that are going on in our lives!


So this is my captured moment for this week:  


Yesterday myself, Mum and my friend Marie spent the afternoon starting to make crafty bits to sell on a stall at Anabelle's Angel Day.  We chose templates and designs to decorate bags and spent the afternoon sewing. Now for people who know me well, will know I have zero experience of sewing and the most needlework I've done in the past is a bit of cross-stitch. My mother especially initially found it amusing when I told her I was going to attempt to sew. 

But here is my finished bag. It literally took me all day - starting at 1.30pm and not finishing until 9.10pm but I'm so proud of it, and myself! It's a case of "look what I made"... Not bad for a first go I don't think and already looking forward to starting the next one. Just hope it doesn't take me as long to complete as the first! 

Take Time

When I was a little girl my grandparents gave me a framed poem called "Take Time". I think there are many truths within it and it has sat on the shelf in our bedroom since we moved in. One of the smallest things they've given me, but something I could never throw away. The last couple of days it has been catching my eye and I've read it again. 


Take time to think - 
It is the source of power.

Take time to play - 
It is the secret of perpetual youth.

Take time to pray - 
It is the greatest power on earth.

Take time to love and be loved - 
It is a God-given privilege.

Take time to be friendly - 
It is the road to happiness.

Take time to laugh - 
It is the music of the soul.

Take time to give - 
It is too short a day to be selfish.

Take time to work - 
It is the price of success. 

Your child's death makes you think very hard about your time on earth. The purpose of it all; everyones place in life. What have you done that has made a difference. What is really important compared to what you thought was important. Being able to look beyond yourselves to the wider context of it all. 

I've learnt much in the last 10 months. 

I've learnt Anabelle did far more to touch this world in 32 weeks than I had managed in 25 years. Yes I'd studied hard and achieved well, I'd got a job and contributed to society with my wage deductions, I'd married and set up home. But my life was all about me until Anabelle existed; when it became all about her. Anabelle in her short time with us and beyond has taught us far more about life than we could have ever figured out for ourselves. 

So within the context of my grandparents poem;

We're experts in thinking. My mind is busier than it ever was before. Thinking about what is, was, could and should have been. I'm constantly reflecting. Thinking about what we want out of our lives and what direction we're heading in; re-evaluating our ambitions and goals. Currently we're setting up our business, putting a lot of our thought into it, not rushing, really wanting to get it spot on. Anabelle's Daddy is going to use his talents to capture the memories of other peoples lives, because we've learnt how precious memories truly are. We're putting lots of thought into Anabelle's Angel Day; wanting to be part of something that could make such a difference to angel families of the future, maybe even contribute to preventing some families from living this life if only recommendations in the Lancet report are effectively acted on. Sometimes the thinking is good for us; other times it is torture. The worst kind of thinking is re-living the week surrounding Anabelle's death in our heads - what did we miss that could've changed this turn of events? 

Accepting fun and play (and laughter) in our lives after Anabelle's death was tough. Almost as if enjoying ourselves was forbidden. Guilt after a "good" day was immense. It is only recently really that feeling has disappeared. We're not grieving any less because we've had a lovely day. All credit is due to our friends who have accepted us as we are and made a real effort to include us in fun - through their effort they bring healing. Because yes, laughter is good for the soul.   

Lots of people; including Jon, do not understand how something as awful as my daughters death  has prompted my return to God and church. Don't get me wrong I've been angry at God and get angry at God, but figure he is big enough to take it. I don't understand and may never understand why Anabelle could not stay on earth. In assembly last week we sang "He's got the whole wide world in his hands" including the verse about the tiny little baby. I don't know where God was for my tiny little baby when she was with me, but I believe she is there now. I've learnt a lot about prayer, with far more still to learn I expect. I believe in it now in a way I never did before. For the most part, my time spent at church is peaceful - I find that is when I am at my calmest. I should set more time aside each day for just being quiet; but how difficult that is in a life so very busy with commitments. I don't fully understand this part of my life but know that I need it. 

We've learnt a lot about love, relationships and friendship. Anabelle taught us the full extent of unconditional love. A lot about our own marriage, accepting our differences to a whole new level with Jon's working through grief being so very different to my own. What it really means for love to endure all. We're learnt a lot about family relationships and friendships. The people in our lives who are really there and those we could never rely on in the first place. We've learnt about what relationships are worth holding onto and those that are poison and cause us harm and probably always did. We've discovered who has drawn even closer to us and held our hands and those who have drifted away.  Anabelle's death has caused the biggest shake up in our relationships; but in a time of re-evaluation I think we have a fairly good idea who will be steadfast for our future from here on in and who will be on our road of happier times.  

I've realised that nearly all things in life take work of some description. I don't mean paid work, but the effort we give from ourselves into the things that we do. We can either be half hearted and have half hearted success, or give it our all and achieve a great deal. I've put every ounce of my being into successfully rebuilding my life. Please don't be fooled by my exterior, some days you'll have no idea how much work went into just getting up this morning and painting on a face, but I'm determined. Before I did a lot of drifting. My life had been easy up until now; apart from the effort I'd put into my degree things had sort of just happened for me and I'd done very little to give back. Now I'm part of a community that does a lot of giving and a lot of supporting of eachother; as well as Sands there is Babs. A group of special ladies who pick eachother up when they're feeling down and thoughtfully arrange things to brighten up someones day. It is nice to be part of something that makes a difference to somebody else, and equally I hope my fundraising project manages to give an immense amount to a charity who's services see angel families through; because it is far too short a day, and a life, to be selfish with what we have. 

So through all of my jumbled up ramblings this morning I know Anabelle had changed the person I was completely and taught me what it really means to Take Time with my life. 
Monday, 18 April 2011

Baby Mailing

During the excitement of being pregnant with Anabelle I spent time signing up to lots of different baby things. Bounty, Emma's Diary, Pampers... you name it; I'd probably put our names down for it. Receiving baby magazines and samplers was exciting, I remember being especially excited about the tinier than you could ever imagine Size 1 nappy sampler that arrived one morning.

But then after Anabelle died the baby mail that kept on arriving on our doorstep or in our inbox was no longer exciting. Just huge painful reminders of what we no longer had.

I spent a day taking my address off email circulars and signed up to the "Baby Mailing Preference Service" to stop mail arriving at the house.  For the most part it worked, there was no longer an influx; but once or twice a month things continue to arrive at the house or on my email. Recently Tesco and Asda have both sent me leaflets regarding their baby events, Tesco still sends me their baby magazine, today Pampers sent me an email about my 8 month old baby.

Only I don't need to know what wonderful high chair and nappy offers are on at the supermarket, my baby is not 8 months old like she should be. 8 months old if she had been born in August when she was due. Instead my baby is almost 10 months old and an angel, born before her time and asleep.

It irritates and upsets me that these things can still get through, somewhere along the line the system has failed. 

I don't have it in me to sift through emails again to find the "please stop sending this to me" link, so instead as soon as something pops up it is deleted; but not before the wobble it sends me into. I certainly don't have it in me to figure out how I stop things landing on my doorstep. 

Its all too much, too painful. 


Sunday, 17 April 2011

Wales on Sunday

Amazingly I bring you a second newspaper article this week that features our daughter and raises awareness of stillbirth. 

Today the Wales on Sunday took the time and effort to share Anabelle's story on a double page spread (page 20 and 21!) to share a glimpse into our lives as angel parents.  I think all credit is due to the reporter (Rachel Mainwaring) who wrote the feature; using mainly the written background I'd sent her as the basis for her article and by doing so I think has portrayed the importance of raising money for Sands perfectly. 

Seeing Belle's tiny handprints in the paper made me very emotional but also very proud. Her short life is achieving great things, raising awareness of stillbirth and supporting Sands is going to be Anabelle's legacy. 

So here it is; I only wish it was the same on the screen as it is appears in the paper today. 

http://www.walesonline.co.uk/showbiz-and-lifestyle/health-and-beauty-in-wales/2011/04/17/stillbirth-devastated-our-lives-say-couple-raising-money-for-sands-91466-28533001/
Saturday, 16 April 2011

Week to Week

I've been thinking about what a difference one week can make. Let me use photographs to illustrate my point.


Monday 14th June 2010 - Pregnancy photo's at 32+2.  
Just two days after this photograph was taken our beautiful girl had stopped moving and the scan that told us her heart had stopped beating and she'd grown her angel wings. Little did we know when this photo was taken what the next week had in store for us. We were so full of excitement and anticipation.



Monday 21st June 2010 - Our beautiful sleeping girl arrives. 
Exactly one week after our last pregnancy photographs were taken we were sat in a hospital room with Anabelle cherishing every precious moment we were able to spend with her before we had to give her up. Hope, excitement and anticipation replaced with brokenness. 


Monday 28th June 2010 - Anabelle's Funeral 
One week after Anabelle was born, and two weeks on from the pregnancy photographs full of hope; we buried our beautiful girl. Brokenness joined by utter despair. A place we visit regularly but still unable to believe we tend our little girls graveside instead of watching her grow. 

 Three consecutive Monday's - three very different weeks. 

Wednesday, 13 April 2011

The South Wales Argus

Well after a chat with the local paper, the South Wales Argus, a few days ago and a photographer visiting me yesterday morning the write up has appeared in the Argus on page 11 today!  


I'm really excited about it and really pleased with the write up. Who knew my little girl could inspire articles in the paper?!  It feels like she is a mini-celeb at the moment! Especially as a second local paper are visiting tomorrow evening and running her story soon too.  (Which of course I will link to everywhere when it goes up too!) 

This afternoon her Just Giving  page has been given a boost with a number of people generously donating to Sands through Anabelle. I'm so grateful and really appreciate all the support we are being given; for something so positive to be happening because something so terrible happened to us is quite incredible really. 

I hope somehow we make a difference for so many people. That by being honestly open about our experience, others are given the confidence to share theirs and know they are not alone.  I hope that Anabelle's birthday event is going to be a roaring success and lots of people will come through the doors and raise money for a wonderful and worthwhile charity, who support many families in their darkest hour. 

We're achieving all this for Anabelle and I'm so incredibly proud of her.
Saturday, 9 April 2011

My 100th Post

It has been a busy week planning Anabelle's Angel Day. The 25th June is drawing ever closer and there is plenty to be done. This weekend has been poster designing and a shopping trip, starting to collect bits for the day. Support has been nothing short of amazing and the collection of prizes we now have for the raffle is immense. 



To date we have recieved; Cut and Blowdry worth £20 from the Salon, Family Ticket for Blue Lagoon in Bluestone, £20 from Tesco for me to buy a prize with, Adventure Golf for 4 at Heatherton, Massage Manicure and Pedicure from Blush Salon, £50 voucher for Arthur Llewellyn Jenkins, Sunday Roast for 4 at the Holiday Inn Newport, £15 Giftcard for Peacocks, Overnight stay with dinner and breakfast at the Cwrt Bleddyn Hotel, Afternoon Tea for 2 at the Hilton Cardiff, Meal for 2 at the Toby Carvery Newport, Meal for 2 at the Parkway Hotel Cwmbran, Tickerts for 2 for Taskforce, Family Ticket for Techniquest, Family Pass for Greenmeadow Community Farm, Family Pass for Manor House Wildlife Park West Wales, £10 Gift Voucher for Dance World, 4 day passes for Legoland, Family Pass for Dan Yr Ogof Cave, an online wieght loss training voucher from the Health Boutique worth £150, a trilogy of wine from Wales and West Housing, free photoshoot voucher from Gigglelicious worth £75, and a free photoshoot voucher from BellePixelle worth £75!



Without mentioning promised prizes still to arrive and donations from Losely Icecream and Animal for stalls on the day and Glitterbugz Cwmbran running the facepainting stall!

When we first started this venture I wasn't sure what sort of response I was expecting; certainly not the incredible response we have had. I started this fundraising attempt to mark Anabelle's 1st birthday, to do something worthwhile in the wake of our grief, to support Sands and hopefully support research that will bring down the number of baby deaths each day. 

We discussed our target, starting with a few hundred and eventually deciding to be ambitious and aim for a £1000. Already over £400 has been donated to Anabelle's justgiving page; with two months still to go until the sponsored walk and Angel Day fete, we are more than hopeful that we'll reach our personal target of the big £1000. 

But now we anticipate raising far more money than I could ever dreamed! 

This week two local newspapers have indicated their interest in running an article about our story and why we are fundraising, and a local bank has promised to match our fundraising five times over if we can initially get to £700 first; that is a potential £3500 promised on top of what we raise.  I'm just gobsmacked and so in awe of people getting on board and behind us to raise this money and in turn remembering our daughter. 

Who knew what amazing things Anabelle could accomplish simply because she is existed and touched people's hearts. She may have only been on this earth for 32 short weeks, but this tremendous amount of support and potential amount of money to be raised can only give each of those 32 weeks even more purpose. Of course I knew this already, but my girl is simply amazing! 

So I shamelessly plug our justgiving page; imploring everyone to dig deep, donating what they can to help us reach our target and ever closer to the golden £700 opportunity! 

Tuesday, 5 April 2011

Transverse Myelitis

I really hate going to the Royal Gwent Hospital for appointments. Situated in the centre of the city means that at busy times of the day the road outside the hospital is gridlocked, the car park is ridiculously small and unfit for purpose for a busy hospital and cars are often queued everywhere waiting for a space which only makes the gridlocked situation even worse.  Your best bet is always to park away from the hospital and walk.  I often wonder if you were to go to the Gwent in the car in an emergency where on earth would you be able to dump it within the grounds. 

In short it is a nightmare. Hence why through Anabelle's pregnancy I was booked into Neville Hall Hospital in Abergavenny; yes it is a bit of a drive, but far less stress than the alternative hospital!

Even the day we returned from honeymoon and travelled to the Gwent with Jon suffering horrific chest pains; we had to park away from the hospital and walk in a bit. In hindsight now this was a stupid and I should've dumped the car. As it turned out Jon was seriously ill with a pulmonary embolism and several clots in his lungs as well as pneumonia; a 10 day stay followed. 

Today we had to visit the Royal Gwent for Jon's follow up neurologist appointment. As predicted the carpark was queuing and the grounds gridlocked. So park away we did, having to walk in in the rain; even with an umbrella and coat getting damp legs and having to sit in a waiting room feeling cold and shivery. Yuck. 

You'll remember that for the last 12 months (yes it really is that long now) Jon has had next to no feeling in his hands. Investigations have been slow going, but to date he has had two MRI scans, conductance tests and a lumber puncture.  The second of the MRI scans showed that Jon had inflammation in his spinal cord which accounted for the nerves and feeling being affected in his hands; the lumber puncture was then ordered to rule out anything nasty.   Today we finally got the chance to speak to the neurologist about all these results. 

Jon's condition has been described as a Transverse Myelitis. 

The lumber puncture ruled out nasties (and for this I thank God) but confirmed a raised protein element which fitted with the MRI scan images and inflammation. The inflammation causing the damage could've been caused by an infection, but they don't really know. It could be like this forever, it could get a bit better, it could go back to normal, they don't really know.  They could give strong steroids and other drugs to try and aid recovery, but success of such treatments are not guaranteed and the potential side affects horrible, so the Doctors and ourselves are reluctant to go down that route. 

Now another MRI is ordered to see if the inflammation has got worse, better or stayed the same in the last six months, and wait another six months to see the neurologist again. So it is a waiting game. Stuck in a limbo where Jon has to live with this condition that is debilitating; he struggles with buttons and getting dressed, knifes and forks, Xbox controllers and mouse buttons, cannot really hold a pen or write anymore, constantly dropping things. Anything that requires fine motor control, manipulation and dexterity is a challenge. 

Where we just have to hope it will get better, not really knowing if it ever will. Sometimes we just wonder when we are going to be given a break. 
Sunday, 3 April 2011

I Dreamed a Dream

Last night one of our friends text me to say she had been listening to the song "I dreamed a dream" and that the song had made her think of me, Jon and Belle. I can certainly see why and relate to the end of the song. Infact it sums it up perfectly; 

"I had a dream my life would be, so different from this hell I'm living, 
so different now from what it seemed, now life has killed the dream I dreamed." 

Today is one of those hellish days. Another significant date to get through; Mother's Day. Whilst the majority of Mother's spend today with their precious children, I am apart from mine. 

Last year on Mother's Day Jon bought me a 'Mother-to-be' card and some Lindt chocolates; Anabelle was 19 weeks grown and we didn't quite know she was a girl yet. We were so full of excitement and anticipation about finding out what flavour our baby was, reaching the half way mark of our pregnancy, our babies ever fast coming arrival and excited that the next time Mother's Day rolled around our baby would be here. I remember us talking of all the things we could do together on Mother's Day next year.  That was our dream; we believed it was our reality. 

But now we know our reality is very different from what we dreamed; from the excitement of my pregnant Mother's Day, by (and on) Father's Day I was in labour and waiting for our sleeping daughter to arrive.  

It is now next year and Mother's Day again, and everything we wanted to do together will never be.  Anabelle is not here to celebrate our first proper Mother's Day; instead her Daddy tries his absolute best to make today as special as it can be regardless and celebrate my motherhood. Despite it all, I'm as much of a Mummy this year, as I was last year. 

Later on today we're going to the hotel where we got married overnight, our special and happy place that signifies so much in our relationship. Before that I'll go and spend some time with my girl in her garden. This is our plan for today; it will see us through. 

We had just dreamed it was going to be so different. 
Friday, 1 April 2011

A Popular Girl

Anabelle has been a very popular girl this week! She has not only featured in one, but two blogs; honouring her memory and telling her story, and by doing so raising awareness for all angel babies and their parents. 

This evening, my friend Ally (and author of http://cancerandbabyequalschaos.blogspot.com) started her month of the A-Z April blogging challenge by writing about Anabelle for her letter A. Such a beautiful touching post that bought a lump to my throat and tears to my eyes, just so thoughtfully written. I'm overwhelmed when other people go out of their way to remember us and Anabelle. Dedicating the start of this challenge to my daughter is one of those small things that go a long long way and mean so much to myself and Jon. 

Our other blog feature was written by a lady called Kate, who is another member of British Mummy Blogger (and author of http://gigglingatitall.blogspot.com). A couple of months ago Kate asked me if I would mind being featured in her "Inspirational Mums" series in the run up to Mother's Day. This week Our Story was posted.   I'm not sure inspirational is how I would describe myself, I certainly didn't ask to be an inspiration; certainly not for these circumstances.  But I'm honoured that a stranger was touched enough by Anabelle's story to include us in her Mother's Day series and to recognise me as a mother by doing so. 
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After Anabelle - Raising Rainbows. I'm Caz, Mummy to beautiful angel Belle and my wonderful rainbow boys, Xander, Zachy and Luc. Wife to Jon. Twitter @cazem Instagram @cazzyem
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