Life in SCBU: Part 1

Shortly after, I was moved to another ward for women with babies in SCBU.  I found this much easier but still struggled with seeing women coming to and from delivery with their new babies - seemingly not a care in the world - whilst I sat feeling rather sorry for myself.  That day I wrote this in my journal: 'today has been a really hard day.  I think the tiredness and hormones are setting in.  I'm finding it really hard leaving Sam in SCBU and desperately want to be with him all the time.  I am so jealous of the mothers who give birth to their babies and no one takes them away from them.  I find it so unfair that I can't touch him and hold him as much as I want to.  The next few weeks seem endless in front of me and I just want him at home with me so much.   I don't think it helps being in hospital myself.  I saw some twins today, same gestation as Sam but both significantly bigger.  What went so wrong?'.  I continued to struggle with being in hospital and asked to go home as soon as possible.  I was discharged after the obligatory 72 hours!

Leaving Samuel at the hospital was the hardest thing I had ever had to do.  I was desperate to go home; to be in my own house and in my own bed.  Our plan was to rest at home as much as possible whilst still travelling the 10 minutes to the hospital to spend as much of the day with Sam as possible - and for me to be able to use the top of the range breast pumps in SCBU rather than my manual one at home!  As we left the hospital I still couldn't walk properly due to the c-section and had to be helped by John.  We walked out of the main entrance and in to the car park and I was suddenly hit by the enormity of what we were doing.  We shouldn't be leaving our baby in the hospital - we should be bringing him home with balloons, cards, smiles and new outfits like the other parents we saw.  I broke down in the middle of the car park with exhausted sobs and cried all the way home.  I struggled to remind myself that Sam was ok.  We called the hospital as soon as we'd arrived home to check how Sam was and then went back in that evening to see him again.

The next few days things seemed to get a bit easier.  Sam had a brain scan at a few days old which confirmed that his brain was clear of any bleeds. This was amazing news and something a lot of people had been praying about.  He was able to tolerate tiny amounts of milk and had even done a small poo.  This is a very exciting thing with a special care baby - it meant his digestive system had started to work!  He was placed on a 'cautious feeding' regime where he was given tiny amounts of milk every couple of hours.  The idea is that the amount of milk, and the gap between feeds, would be very gradually increased as Sam was able to tolerate more milk.  He was being fed through a naso gastric tube and the nurses showed us how to put his milk down this.  By day 5 he was able to tolerate 2ml milk every 2 hours!  This sounds like a tiny amount but it was very exciting at the time. We were also able to do his 'cares' ourselves which involved gently cleaning him with cotton wool and sterile water and changing his nappies, both through the windows in his incubator.  This juggling act took some getting used to but made us feel more like his parents than people who observed him through a box.  We decided that we would try to be at hospital for his cares whenever we could.  

Throughout his stay in special care, Sam miraculously managed to stay infection and jaundice free but had a lot of ongoing problems with his feeding.  When he was 8 days old we were told that, as he was getting towards full feeds, the next step would be to take him off his drip and remove his long line so that he would get all the nutrition he needed from milk.  However, that day when we went in to visit him and he seemed quite distressed. He still didn't cry as such at that stage but he looked uncomfortable and his heart rate kept dipping which I found very upsetting.  Just before we left for the night he was sick.  I remember getting really upset about what had happened and didn't want to go home,worrying that he would be sick again and choke during the night. A nurse explained to me that he possibly had a bit of reflux which was normal, especially in premature babies.  I couldn't stop thinking about it and didn't sleep that night.  When we arrived the following morning everyone was happy with him.  He hadn't been sick again but they had kept his drip and long line in until the following day, just incase.

The days in special care are very long and monotonous.  Most of the time is spent either staring through the incubator or expressing milk.  Breast feeding was something that wasn't an option for Sam as he was so small and weak and his sucking reflex was very underdeveloped but I carried on expressing as I knew how important breast milk was for him.  The expressing room in special care is a surreal place!  It is a small room split in to two with a fridge, freezer and sink in one half and a number of chairs and breast pumps in the other half.  These breast pumps bear no resemblance to the small, portable pumps that people buy when they have a baby.  They are huge, hospital grade pumps that plug into the mains electricity and work a lot harder than the manual pumps people own.  They can even pump milk from both breasts at the same time which was a source of many jokes at the time.  Strangely enough, the expressing room became somewhere that I looked forward to going.  There were always people in there to chat to and as everyone was in the same position it became a huge comfort to exchange stories, anxieties and experiences with people who had endured the same things as I had.  It was there that I met one of my closet friends, Siobhan.  We hit it off straight away and went through the stresses of special care together.  Sam and her little girl have been close since and there is a level of understanding and empathy that I don't feel is possible unless you have experienced special care.  The staff in the unit that we were in are amazing.  They are both highly skilled and friendly and I feel that it is the friendliness and warmth that they show both babies and parents that makes the unit a safe place for parents to develop and build friendships with each other.  I can't imagine how anyone could be in special care for any length of time without support from other parents.

Size Matters: Part 2

The next 7 hours went by in a blur of tears, sickness and pain.  There was another newborn baby on the ward but he was full term and not poorly.  No one had taken him away from his mum and visitors came and went and cooed over him whilst I sat and mourned for the normal experience I so desperately wanted.  I haven't ever been able to put into words the feeling of having your baby taken away from you.  All of a sudden your body is awash with hormones that are telling you to do everything you can to protect this tiny being yet you become obsolete as the staff in special care take over.  Eventually a midwife brought me a photograph that the neonatal nurses had taken of him.  He looked tiny, wrinkled and exhausted and I asked John to go back to special care and take a better photograph of him - which he did!

Seven hours after Samuel was born I started to regain feeling in my legs and was allowed to go down to special care to see him.  John had to wheel me in a wheelchair that would only move backwards and that, combined with the morphine and anesthetic effects, caused me to be violently sick.  I was told that I wouldn't be able to see Samuel until I was a bit stronger so I stood my ground, held my breath and defiantly kept my head down and eyes focused forwards, whilst forcing John to push the impossible wheelchair FORWARDS until we made it to special care without any more vomiting!

My first memory of seeing Samuel is very hazy.  He was tiny and there were wires coming out of him everywhere.  He wasn't ventilated though and didn't need oxygen which was amazing and was one of the first miracles we saw after his birth.  He wore a nappy that as good as covered his whole torso and he looked tired and fed up.  I remember his half hearted effort to open one eye and squint at us when he heard our voices but there was no crying, no grappling for a feed and no attempts to focus on objects as normal newborn babies do; he simply lay, in silence, every breath and tiny movement he made using up precious calories that he needed to preserve to grow. To live.  

The nurse came over and asked if I'd like a cuddle.  I hadn't prepared myself for that at all - I was certain we wouldn't be able to hold him for a while.  She took him out of his incubator very gently and wrapped him in a blanket explaining to us the importance of keeping him warm to conserve calories.  Everything came down to calories.  Even the way in which his nappy was changed; as quickly as possible through the windows in his incubator without taking him out or moving him unnecessarily.  It was all so clinical.  I hated, and still hate, the incubator.  A clear box that put up a boundary between my baby and I.  The monitors around it that were connected to Sam by various wires beeped, as it seemed, every couple of minutes and a drip machine at the side of his incubator contained various liquids which sustained his life.  Milk wasn't an option.

The nurse handed the blanket wrapped bundle to me to hold and explained that it would only be for a couple of minutes.  He felt tiny. Even through the blanket.  His skin was paper thin and his limbs felt like tiny little twigs.  His ribs were visible through his chest and his tiny finger and toe nails felt like claws.  But I loved him.  I sat and cried, uncontrollably, as he lay in my arms.  My beautiful little boy.  Already I couldn't imagine life without him.  My 'couple of minutes' went far too fast and before I knew it he was back in the incubator and I was being wheeled back to the ward.

My sleep that night was fitful and uncomfortable.  I still hadn't been allowed anything to eat or drink due to the fact that I was still vomiting a lot and was still on a drip feeling very weak.  I woke up feeling sick and hungry and asked for a bowl of cereal but when I was checked over by the midwife she said that I had no bowel sounds and would not be able to eat for a while.  Wondering what to do instead, I decided to get dressed as best as I could, make myself as presentable as possible - I even put on make up although goodness only knows who for - and hobbled down to special care to see Samuel.  

Whilst my lack of bowel sounds was a cause of annoyance, Sam's lack of bowel sounds was cause for concern.  They would want to be giving him tiny amounts of milk soon but his digestive system didn't seem to be working.  They decided to wait another 24 hours and see what happened.  Although he couldn't have any milk, one of the special care nurses explained to me the importance of expressing colostrum (first milk) to refrigerate for him to have when he was ready.  She supplied me with an expressing kit and showed me how to use it very quickly before I hobbled back to the ward.  The midwives felt differently about expressing and advised me to try by hand at first, rather than using a machine.  I couldn't get any milk and I certainly didn't want any help from a midwife to try.  All I could think about was Sam and his unresponsive digestive system, the fact that he was severely under weight and needed all the calories he could get.  Back to those calories again.  I asked John to bring in my manual breast pump from home and, when he arrived, sat in bed, cross legged, wondering - no, obsessing, about how to use it.  I was tired, emotional, sore and hormonal and in my (somewhat irrational) mind, if I couldn't get the pump to work, I wouldn't be able to express milk and my baby wouldn't get any of the nutrients he needed.  Of course, I now know that there is a milk bank available for premature babies and if all else failed, formula would be an option.  But at that moment in time there were no other options.  I sat on the bed and sobbed.  I was crying for the fact that I didn't know how to use the pump; I was crying for the exhaustion and pain; I was crying for the culmination of all of the worry of the previous month; and I was grieving for that 'normal' experience that other women on the ward were getting.  

I remember seeing a lady on the bed opposite me getting prepped for her c-section.  I remember taking in her appearance and that of her husband.  She had red hair and they both wore glasses.  They both seemed so nervous.  I could tell, from their conversation, that they were waiting to go down for her to have a c-section.  Feeling a stab of pain at the thought of how different her experience would be to mine, I returned to my instructions trying to make head or tale of them. I remember the way the red haired lady looked at me as I frantically tried to decipher the instructions of the breast pump.  I wondered what she must think.  What I must have looked like? - a frantic, obsessive woman with no baby in sight.  I longed to tell her that I did have a baby - that he did exist.  But she was whisked away to theatre for her c-section.  Little did I know at that moment that over the next few months she would become one of my closest friends and someone who helped me through the following 4 years.

Size Matters: Part 1

Size Matters: Part 1

December 2008

I was well into my second trimester and the morning sickness hadn't stopped. I was feeling exhausted.  I was struggling to eat properly and hadn't gained any weight in the way that you're meant to when you are pregnant.  I envied women who bloomed in pregnancy but every time I looked at the scan photograph I knew that every bit of tiredness and sickness would be worth it.  Work was incredibly busy and I put my exhaustion down to this.  I tried to rest as much as I could outside of work but the feeling of illness and exhaustion didn't go away.  

At 28 weeks I had a routine midwife appointment.  My blood pressure was checked and my urine was checked for protein.  Both were fine.   The midwife located a heart beat quickly and I lay and listened to the sound.  I was certain, at the time, that it was the most beautiful sound I'd ever heard - the sound of my baby's life. When the midwife measured my bump, however, she was concerned about the size.  She made a note of it and reassured me saying that as I am slight she wouldn't expect me to have a huge bump and that every woman and baby grows at a different rate.  Just to be on the safe side she wanted to see me again the following week.  I wasn't especially worried.  It played on my mind but not enough to cause concern.  I went back to work, had a quick chat with a colleague to try and dampen my worry, and tried to put it out of my mind.  

The following week my bump was measured again and growth had been a lot less than they would have expected.  It was a couple of days before Christmas and the midwife advised me to rest and to come back a few days later - my blood pressure and protein levels were still fine.  We went home and enjoyed Christmas as much as we could.  My sister in law was also pregnant with her second baby - not much further on than me - and for the first time I could see that there was a big difference, not only between the size of our bumps but also in the way she felt.  She was blooming and I was exhausted, run down and frail.  We didn't tell our families about the growth issues.  We didn't want to worry them but it was having a definite strain on us.  On 29th December we returned to the midwife and heard the heart beat again.  I had tried so hard to rest over Christmas and was feeling positive - especially since my whole family had suffered an outbreak of gastric flu yet i had remained unaffected and had been able to eat normally.  I was certain I was getting stronger and even went alone to see the midwife.

I lay on the bed while the midwife took out her tape measure to measure my bump.  She measured once, readjusted the tape measure and measured again for certainty.  She explained that there had still been no growth. "I don't want you to worry", she began to say, "but I'd like to refer you to the women's for a growth scan as you seem a lot smaller than you should be for this gestation".  She reassured me as best as she could but there and then called the hospital to make an appointment for a growth scan for me the following morning.  As I was leaving she said, almost as an afterthought, "try not to worry too much.  They'll probably just want to monitor you - they won't just whip in and deliver at this gestation".  I drove home in a daze - the thought of premature delivery hadn't even entered my mind.

The next month is a bit of a blur of appointments and monitoring.  My growth scan revealed that our baby hadn't grown as much as he should have done.  It also confirmed that there was resistance in the blood flow through the placenta meaning that the baby wasn't getting the sustenance he needed.  An appointment was made for me to come back a couple of days later.  

At the second growth scan things still weren't looking great and we were asked to wait to see a consultant.  No appointment had been made for us, instead we were asked to hang around and wait until the consultant was free to see us.  I felt awful.  Something was wrong with my baby and it was serious enough for us to be slotted in to the schedule of a busy consultant.  The scan that the consultant did confirmed what the sonographers and midwives had found.  There was resistance of blood flow through to the placenta and 'absent end diastolic flow' through the umbilical artery.  My baby wasn't getting enough blood and would be delivered early at a time that was considered safe - at a time when his internal organs had had as much time to develop as possible, but before the restricted blood flow became critical.  I was given steroids to boost his lung development and my notes now read 'IUGR', intrauterine growth restriction, a term that I would become very familiar with over the coming years, as I would with the consultant. The plan was to deliver by 34 weeks.

Over the next couple of weeks I went into the hospital for daily monitoring and CTGs.  By now I was on bed rest at home as much as possible and felt awful.  The baby's movements had slowed down significantly which, I learnt, is a way that babies conserve energy in utero.  I had to keep a kick diary to monitor his movements.  It was very unnerving and I even considered the possibility of the baby not surviving and ran through different scenarios in my mind wondering how I might cope if the worst happened.  At 33 weeks his movements had slowed so much and his heart rate was not what they wanted it to be.  The medics hadn't been happy with the CTG readings for a couple of days.  Once again I saw our consultant.  She ran another growth scan which confirmed that the baby was showing signs of 'brain sparing' - where oxyganated blood is sent to the brain at the expense of the other organs in order to protect it.  My initial worry was the fear of my baby having cerebral palsy - something that they couldn't deny could being a possibility.  An appointment was made for me to have a Caesarean section the following morning.  We were advised to go home and have a nice meal before I had to come back to the hospital that night for admission.  That night we settled on the name Samuel meaning 'God has listened' and 'asked of God'.

Once I was admitted to hospital I had a series of CTGs through the night and didn't sleep at all.  I was excited at the prospect of meeting my little boy but was terrified at the thought of what could potentially go wrong the following morning and in the coming weeks.  I tried to keep myself occupied by reading books and listening to music through the night but my mind was in overdrive.  The following morning I got up early and had a shower, trying to bring some sense of normality to the day.  The morning seemed to go on for ever.  We found out that, at that present time, there wasn't a bed available in special care and the neonatoligists were having a meeting to decide what to do for the best.  I was terrified at the prospect of having to be transferred to another hospital not as close to home where I was feeling isolated.  Eventually, another CTG showed that Samuel was tachycardic and it wasn't safe to leave him any longer.  I was very quickly prepped for theatre and sent down to have my c-section.

A canula was placed in my hand and I was give a spinal.  Everything seemed to happen so quickly.  John was brought into theatre to sit with me and the operation began.  Within minutes Samuel was born.  We waited for the cry but there was deafening silence.  There was a screen up that obstructed our view but we knew that the neonatoligists were working on him.  The silence went on for many minutes and in that time the technician kept popping to see what was happening.  We asked him what was going on but he couldn't tell us anything.  There was only one thing that we wanted to know - was our baby alive.  It became clear quickly that he was just filling time in going backwards and forwards while he checked on the progress being made. The thought of losing Samuel crossed my mind again and I began to panic.  John's body language and expression mirrored mine as we both began to fill up. Finally we heard a tiny, mouselike squeak.  It wasn't the gasping for air cry that new born babies normally make but it was a sign of life none the less.  He was brought round to the side of the operating table for us to see him for a couple of seconds before he was whisked away to special care.  I remember the shock I felt when seeing how tiny and delicate he was.  I was overwhelmed by how beautiful I thought he was but I can barely look back at photographs of him now due to his fragility.  We weren't able to touch or hold him as he was taken away so quickly.  I longed to be able to hold him.  I was taken into recovery where I had to wait for a while as my temperature had dropped quite significantly.  Once Samuel was stable, John was able to go and see him but I had to go back to the ward until I was stable too.  It was confirmed that he weighed in at a tiny 2lb 13oz - very small for his 33 weeks gestation.

A New Focus

So....I have 2 amazing writer friends. You can read all about them here  http://mywordpie.com/while-im-away and here http://campbellfiona.wordpress.com/bakes/

Over the past 18 months or so they have been supporting me (not a writer!) with getting my story down on paper to share.  The original idea was to self publish to raise funds for research into the causes of stillbirth. I wrote 30,000 words which, for me, was a huge amount. Over the past year, since the arrival of our foster daughter, I have found finding the physical and emotional space to write more difficult so have slowed down significantly.  At the moment I can't imagine finding the time to finish my story or be able to self publish but I desperately want to share my story.

After much thought I have decided to share it here, in chunks - or chapters - over a period of time. Hopefully this will help me gauge response and reaction and, once I get to the end of what I've already written, it might spur me on to finish my story through writing in small sections.

Here is my first instalment:

July 2008

Defying the Odds

We sat in the scan room as the sonographer waved the ultrasound wand over my tummy.  Even when you have no reason to fear, every scan brings the element of dread with it - the 'what if?'.  The image of the baby appeared on the screen and the sonographer very quickly reassured us "there's the heart beat" before carrying on checking things and taking measurements.  We could see their head, the shape of their profile, their tiny arms and legs, their hands and feet.  We could see the baby moving about in amniotic fluid and reaching and stretching.  Perfectly formed - fearfully and wonderfully made. The baby seemed less wriggly than at the 12 week scan - maybe we were getting a chilled out baby who slept when they were meant to and woke when they were meant to?  The sonographer told us that everything looked fine and that we were having a little boy.  I couldn't actually imagine having a little boy - I had felt certain that we were having a girl but we were thrilled none the less.  We took one last look at him, certain it would be the last time we would see him before his due date nearly 5 months later.  We took the photograph home and proudly displayed it feeling excited and comforted every time we looked at it.

We had been married just under 2 years when we found out that I was pregnant with Samuel.  A couple of years before we got married I was diagnosed with Poly-cystic Ovarian Syndrome (PCOS) after years of ogliomenorrhea (infrequent periods) that had been very painful and VERY much on the infrequent side with me often going in excess of 6 months without having period.  At that time it was treated with 'the pill' which helped to give me regular periods.  On diagnosis we we're told that, until we stated trying for a baby, there would be no way of knowing the extent of my fertility problems but it was expected that we would have a lot of problems conceiving.  We weren't even married at the time, none of our friends had children and I was very career minded so the concept of broodiness was alien to me.

Our lives revolved around our Church community and work.  We attended a large, Christian Church in Liverpool and both became involved in Church life.  The majority of our friends attended the same church and in addition to this John played for the Church football team and I helped with the Sunday morning childcare.  Church was, and always has been, a big part of our lives together.  We joined our Church in 2005 after friends of mine made the progression there from the Church I attended as a student.  John came   along, on my recommendation, the following week and shortly after he became a Christian and proposed a month later!  Just before we got married, I was enjoying my first proper job following university which was the reason we had both found ourselves in Liverpool - John to do maths and management and me to do teacher training.  We both felt that Liverpool was home and decided to stay on after university which is when we met.   My job at the time was in the early years sector working for Sure Start so I came in contact with a lot of babies and young toddlers.  I have vivid memories of holding the babies and toddlers and being told by well meaning adults that "it suits you" to which I would shrug them off telling them that I didn't want children.  It was a long time until I realised that my reasons were a method of self preservation and formed out of a complete lack of acceptance of the fact that I may not be able to have children.  Infertility was a completely foreign idea and one that I refused to think or talk about.  

At the time of our wedding, one of my closest friends was pregnant and my sister in law was in the very early stages of pregnancy.  They would be the first people close to me who had children and when they were born, 4 and 7 months later respectively, my feelings completely changed and the fact that I might not be able to have children became more painful yet I carried on telling my story of not wanting children.  Every job I have ever done revolves around working with young children and their presence in my life, along with the presence of my nephew and my friends' new babies, began to intensify the new feeling of broodiness I was experiencing and, following discussion with John, I eventually decided to come off the pill in the hopes that my periods my start and become regular so that we could start trying for a baby.  When I stopped taking the pill I had the normal 'withdrawal' bleed and then began to wait for my ovaries to kick into action.  Weeks went by and then the weeks turned into months.  I began to get antsy but didn't see it as an infertility issue - we weren't going to start trying for a baby until I had got my first period.  But after 9 months my periods still hadn't started and I decided to go and see the doctor.  He chatted about my desire to start trying for a baby and suddenly the flood gates opened.  I sat in his room and wept.  I realised that I'd been seeing babies everywhere I looked and, even though we weren't officially 'trying', the pain of knowing that I couldn't even have a normal period (and therefore probably not ovulate to get pregnant) had become really painful.  He spoke about the stress that waiting for my periods to start could be having on my body and subconscious mind and referred me for a scan to get more of an idea what was going on.  He then advised that we stop waiting for a period and start trying in the mean time.  The doctor I saw was actually a Christian and asked if he could pray for me.  He prayed specifically that my mind would be put at peace and that, within a month of trying for a baby, I would find out that I was pregnant.  I went home to John, reassured that I was to have a scan, but with a complete lack of faith to belief for falling pregnant straight away.  The following Sunday at Church, Prue - a lady I barely knew and a new mum - came and asked if she could pray with me.  She felt that we were promised a baby and that it would happen soon.  Less than a month later, after my periods still not restarting, I found out that I was pregnant.  I called John, who was on some training at Church, and asked him to come home over his lunch break.  He arrived home to see the positive pregnancy test on the table and the two of us were delighted!

....to be continued....

As time passes inexoribly...

At the start of this year I decided to buy a mason jar to fill with memories from the year. A friend was doing it and I thought it'd be a great idea.reasonsn't wait to sit at the end of the year and look back through all of the pieces of paper remembering the joy and the tears from the year and being thankful as a family. The mason jar is sat on the shelf in our kitchen.........filled with........coffee pods. I put it to use after our coffee machine being put back to work. The jar had remained empty for months and by the time I remembered about it I felt it was too late to start filling it with memories from the last couple of months of the year.

But something has happened this week that has made me sit back and reflect on the year we have had and what I have to be thankful for.

My beautiful friend lost a baby at 14 weeks under horrible circumstances.

I don't want to go into her story here as it is her story and not mine but needless to say they are devastated. Like us, although for very different reasons , having a family has not been a straightforward journey for them.

Seeing her go through it has reminded me of the immense pain we were in 15 months ago having suffered our third loss in 12 months; a very early 7 week loss following a miscarriage at 10 weeks and a stillbirth at 32 weeks....full term for me due to a clotting disorder meaning I am unable to carry well into the third trimester. The pain is suffocating. Everything you hoped for is destroyed in one moment and your life suddenly takes a whole new course.

People who have read my blog before will know that 6 months ago we took the huge decision to stop trying for a baby following 3 years of loss,  prematurity and failed fertility treatments. It was the biggest decision we have ever made and has caused us to completely refocus our lives and rethink our priorities.

So here we are, 15 months after out last loss, having rebuilt our lives beyond any recognition of what they were like before the losses began - before we struggled to conceive and then lost our daughter at 32 weeks, 27 months ago.

So I thought I'd manually look back and imagine I'd filled the jar. What would be in it and what memories would we be reliving?

We were asked to consider caring for a little girl a similar age to Emilie.  The initial pain of the comparison between the two babies melts away when we hear her story and we agree to the placement.

Samuel celebrates his 4th birthday and our families meet my husband's half brother for the first time. We have a wonderful time getting to know each other and look forward to building relationships.

We go away on a family holiday to centerparcs and have fun making new memories together.

Our foster daughter arrives.  Our lives are changed for ever.

I facilitate my first parenting course...something I have wanted to do for years. My passion is working with children and families and the timing of everything over the last couple of years has meant that I am now able to do it without having to worry about juggling work! I go on to facilitate 2 more over the course of the year.

We continue to suffer from infertility which which breaks my heart on a daily basis. There are days when it is all I can think about. I am referred to a new consultant who agrees to a new course of treatment. I sob in his office - much to his embarrassment - purely at the relief of being listened to.

Our foster daughter's complex needs become more known and we are asked to consider caring for her on a permanent basis. We know that we cannot continue having fertility treatment and trying for a baby at the same time as caring for a child with additional needs. We decide to put our foster daughter first and stop trying to expand our biological family.

The relief is immense.

Samuel starts school. I have a month of slipping back into the clutches of depression due to a combination of missing him so much, knowing my life has moved on and Emilie's 2nd anniversary.

The fog lifts towards the tail end of the year and I am able to look back and realise how much I have to be thankful for and how far I have come.  I didn't think I would ever recover from the grief of losing a child and it is something that still effects me on a daily basis but we are still standing over 2 years on ..... Albeit sometimes only just.

And here were are at the end of another year.  I felt another wave of depression hit at the start of this week spurred on by the inexorable passing of time. I felt suffocated at thought of another new year looming and genuinely thought I was no further on than I was at the start of this year. Or the year before.

Looking back I realise how wrong I was.

And maybe I'll fill that jar in 2014...

Being 'That' Parent

Parenting a child with additional needs is more challenging than I had ever expected. The child's behaviour is challenging, the exhaustion is challenging, the physicality of parenting a child with additional needs is challenging but the most challenging aspect of parenting a child with additional needs is the reactions of other people.  

You know that it is not appropriate to go around saying 'the reason they are behaving this way is because they have............' Yet everything in me wants to shift the responsibility for their behaviour and, what may seem to an outsider, my lack of dealing with it appropriately.

A pen, a car or an item of food are thrown across a table, across a room or at an innocent bystander; hair is pulled; another child is hit and my reaction is to guide, rather than chastise.  Of course I give a firm 'no' and try to remove from the situation if appropriate but more rigid behavioural management strategies such as time out could be seen as rejection; physical restraint may be retaliated to; rewards are not understood and understanding/sustained interest is not sufficient enough to withdraw privilages. There are times when it feels like nothing works and having to leave them to cry it out on the floor seems like the only thing to do.  And then the moment passes and they calm down. You calmly explain 'we don't hit/throw/pull hair we need gentle hands' and the world is a calmer place.  Until it all begins again. And again. And again.

The looks that we are given - the tuts, the sighs and the stares cut deep and, on a difficult day, can make me feel incapable. So I often find myself leaving before things escalate again.  We gradually build up the length of time we can stay at places. I explain to trusted people that we may not be able to stay for long, that we may need to make a quick exit and apologise for being 'not all there'.  

Anything can trigger this cycle...a new room layout, unfamiliar sounds, unfamiliar faces, an unexpected visitor, an inability to find a certain toy, a new structure.....all of these things need to be addressed and the exposure to them needs to be increased gradually but it is a slow process.

Parenting a child with additional needs is more challenging than I ever expected.  It is also more rewarding than I ever expected.  You try over and over to work on something to no avail ..... And then something clicks.  There are changes in behaviour and increased ability to handle things - new situations, new stimulations, new people. Progress is made in ways you never thought possible and trust is developed.

 The most special, challenging, rewarding thing I have ever done is parent a child with additional needs. The journey is exhausting and is a constant learning process but, as a family of a child with additional needs, we are learning and growing together and are working out the best way to handle the situations we are in.  We are learning that additional needs are just that: additional.  Added extras. Different personality traits and a different way of thinking and being.  We are learning to be flexible and find our own ways to embrace additional needs.

The following is written about a birth child rather than a foster child but it still rings true. 

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

When Heaven Touches Earth

Two years ago today I lay on a bed expecting to deliver my daughter due to reduced fetal movement. I have a history of premature delivery and knew that the chances of me reaching full term were very slim. I had reached 32 weeks - a week short of my son's delivery gestation 2 1/2 years earlier - as full term as I was ever going to get.

Instead time stood still as the news of our daughter's death was given to us. Two years ago tomorrow she was born.

Over the past two years we have experienced grief like I could never have imagined, grief that cannot be put into words. Loss of a child is a heart wrenching sort of grief.  It grasps your chest and prevents normal breathing. It takes over your every waking moment and controls the few sleeping moments you can manage, filling your subconscious with fears and obsessions, with fantasies that will never come to pass so that the grief hits in a fresh wave each time you wake up realising that it was just that - a fantasy. Grief is crippling and all encompassing worming its way into your relationships, your friendships and your family.  It tells you that life will never be the same, that you will never regain the joy that you have lost, that there is nothing to live for and no sense in trying. 

It hits in fresh waves, over and over, until you feel like you can't bear it any longer.  It is like running a mega marathon but never getting a second wind. Feeling the breath taken out of you, feeling the pain seize your muscles as the intensity of the run becomes too much...

...but not being able to stop.

And then, slowly but surely it eases. The pain doesn't go away. Time does not heal where the loss of a child is concerned but your capacity increases. The belt loosens and you slowly learn to breathe again, slowly rebuild your life and learn what the new normal looks like. slowly restore relationships, slowly relearn your purpose and get to know the person you have become following the breaking of yourself.

Slowly but surely the fog lifts.....

.... And you realise there is beauty .....

Heaven becomes a tangiable concept. A place so close that you believe you could touch it if you could just reach that far.  Death is no longer something to dread and God breaks through the stifling silence to reassure me that there is something else.  Longing is replaced by hope through the realisation that my daughter - and that my miscarried babies - are not lost to me forever. 

I wonder what she'll look like now, wonder what she'll enjoy. I become impatient to meet her but know that this time is not eternal, I know that one day I'll look back on this as a distant memory as I sit surrounded by my children and marvel at the heavenly beauty around me. 

And so heaven becomes real and a song resonates in my mind.....

Happy heavenly birthday, my beautiful girl.

Heaven is the Face

(Steven CurtisChapman)

Heaven is the face of a little girl

With dark brown eyes

That disappear when she smiles

Heaven is the place

Where she calls my name

Says, "Daddy (mummy) please come play with me for awhile"

God, I know, it's all of this and so much more

But God, You know, that this is what I'm aching for

God, you know, I just can't see beyond the door

So right now

Heaven is the sound of her breathing deep

Lying on my chest, falling fast asleep while I sing

And Heaven is the weight of her in my arms

Being there to keep her safe from harm while she dreams

And God, I know, it's all of this and so much more

But God, You know, that this is what I'm longing for

God, you know, I just can't see beyond the door

But in my mind's eye I can see a place

Where Your glory fills every empty space

All the cancer is gone

Every mouth is fed

And there's no one left in the orphans' bed

Every lonely heart finds their one true love

And there's no more goodbye

And no more not enough

And there's no more enemy

No more

Heaven is a sweet, maple syrup kiss

And a thousand other little things I miss with her gone

Heaven is the place where she takes my hand

And leads me to You

And we both run into Your arms

Salmon Fishing in the Yemen

I did a short talk at my church this week - it was the first time I've been asked to speak and although it was only a 15 minute talk I was incredibly nervous and planned to the nth degree. The talk was part of a series of talks called 'Frontline at the Movies' which looked at films and drew out a life message from them. I chose 'Salmon Fishing in the Yemen' and talked about 'Faith for the Unseen and Impossible'. I've had quite alot of feedback on my talk throughout the week so decided to edit my notes into blog form and post them here.
Enjoy....





I loved Salmon Fishing in the Yemen when I first saw it. It's a very easy to watch film that probably best falls into the category of Rom Com - definitely a feel good film. Yet in-spite of its simplicity, Salmon Fishing in the Yemen really spoke to me.

The premise of the film is that a Yemeni Sheikh has a grand plan to introduce Salmon Fishing in the Yemen which, according to Dr Alfred Jones from the government dept of fisheries and agriculture, is a 'fundamentally unfeasible' task. The Sheikh, however, refuses to be defeated. He genuinely believes that it is possible.

There is a particular scene in the film by which I was very affected. The Sheikh, Dr Jones and the film's heroine are enjoying a dinner party together in which the topic of fishing - and introducing salmon fishing into the Yemen - is raised. The Sheikh explains that it would be a miracle for this to happen and the following exchange takes place:

Sheikh: It would be a miracle of God if it were to happen.

Dr. Jones: I’m more of a facts and figures man.

Sheikh: You aren’t a religious man, Dr. Jones?

Dr. Jones: No I’m not.

Sheikh: But you’re a fisherman Dr. Jones.

Dr. Jones: I’m sorry I don’t follow.

Sheikh: How many hours do you fish before you catch something?

Dr. Jones: Hundreds sometimes.

Sheikh: Is that a good use of your time as a facts and figures man. But you persist, with such poor odds of success. Why? Because you’re a man of faith, Dr. Alfred. In the end, you are rewarded for your faith and constancy.

Dr. Jones: With due respect, fishing and religion are hardly the same thing your excellency.

Sheikh: With equal respect, I have to disagree.


I don't know much about fishing - most of my attempts as a child resulted in my brother impaling my finger on fish hooks - but I do know that there is neither a guarantee that there are fish in the water nor that they will bite and be caught. But people still go fishing regardless of this believing that they will catch a fish. They spend hours doing it - sitting at the side of a river or lake waiting and hoping to catch a fish. I loved this analogy of fishing as trust in the unseen. I loved the concept of persevering - keeping going and being '.......rewarded for your faith and constancy.'

Not knowing much about fishing I decided to speak to people who did. A friend in America told me:
'You fish for [salmon] when they are mating. They don't want to eat, they just want to mate. So, you have to tick them off enough to want to bite the bait, it has to be the right bait, and the line can't be too thick as it will scare the fish. So you have to use this teeny tiny line that is almost guaranteed to break when the fish takes off and hides behind a log. The odds are truly against the angler, however, when you hook one of these 20+ pounders...the fight is amazing!! The wait makes it even better!'

Amazing! What a seemingly possible situation and what patience it requires. I couldn't imagine spending hours upon hours of my life sitting at the side of a river in waiting for something that isn't guaranteed to happen. Yet people do.





Dr Jones tells the Sheikh that he can spend "hundreds" of hours trying to catch a fish. Hundreds of hours - sat at the side of the water. The key thing is that he knows what he is waiting for - what he is hoping for; it is an active process. He has the correct equipment to catch a fish. He is not hunting for a deer expecting to catch a fish; he is confident of what he is waiting for.

The Hebrew translation for the word 'wait' - chakah - talks about waiting being just this - an active process - waiting in anticipation for something to happen; looking towards something, earnestly expecting'.

Of course if you are waiting, you are hoping for something to happen - or not to happen. There is a sense of expectation.

I asked a couple of non Christian friends what 'hope' meant to them and it was difficult for them to define. One person told me that 'hope' can mean vastly different things in different circumstances; "I hope I get that job"....."I hope the kids are ok..." "I hope the cancer hasn't returned..." To me these were incredibly different uses of the same word.

The use of Hope in the Bible is very different to this, however. It is an indication of something that is certain - a strong, confident expectation rather than something wishy washy that can't be defined.



When I learnt this, it brought a whole new meaning to 2 of my favourite scriptures:









These scriptures suddenly become more real - more validated. We are waiting for and hoping for something that is CONCRETE and CERTAIN. In a God who will work for us. Fishermen have a strong and confident expectation in their ability to catch a fish - or they wouldn't be fishing, surely. They wouldn't waste hours of their lives investing in something that they are sure of. In the same way, If we have a strong and confident expectation in God I believe that we can have faith in impossible situations.

The Sheikh refuses to let circumstances get in the way. He looks past the desert land, the climate, the distance the fish must travel etc to see what can be achieved with faith. He looks past the physical realm into the spiritual to see what is possible through God. He is unfazed by the hours upon hours that he may have to wait to catch a fish and states that, "you persist, with such poor odds of success. Why? Because you’re a man of faith, Dr. Alfred. In the end, you are rewarded for your faith and constancy."

This reminded me of a story Jesus told:

5 Then, teaching them more about prayer, he used this story: “Suppose you went to a friend’s house at midnight, wanting to borrow three loaves of bread. You say to him, 6 ‘A friend of mine has just arrived for a visit, and I have nothing for him to eat.’ 7 And suppose he calls out from his bedroom, ‘Don’t bother me. The door is locked for the night, and my family and I are all in bed. I can’t help you.’ 8 But I tell you this—though he won’t do it for friendship’s sake, if you keep knocking long enough, he will get up and give you whatever you need because of your shameless persistence.[a]

9 “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. 10 For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.

11 “You fathers—if your children ask[b] for a fish, do you give them a snake instead? 12 Or if they ask for an egg, do you give them a scorpion? Of course not! 13 So if you sinful people know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask him.”

I loved this; I loved the idea of having 'shameless persistence'. Of 'being rewarded for faith and constancy'. Of not giving up on what God can achieve.

I don't want to ruin the end of the film but just to add that (and I can vouch for this) sometimes, in spite of our faith, things don't come to fruition in the way me may want or expect - perseverance may be needed to get the water to remain in the river so that the salmon can be fished for or God may have something better in mind. There are even heroes in the Bible of whom it says " (Hebrews 11:39 NLT) [39] All these people earned a good reputation because of their faith, yet none of them received all that God had promised.[40] For God had something better in mind for us, so that they would not reach perfection without us.

Faith is prepared to accept that there may be no reward for the faithful in this world; and that if this be the case, then the reward will come in full in the heavenly country. (Steven Coxhead)

I saw a Tim Keller quote on Twitter recently which totally changed my perspective on having faith for the unseen.

“We can be sure our prayers are answered precisely in the way we would want them to be answered if we knew everything God knows.”

One day we will be able to stand and look back on our lives with the knowledge that everything fitted together - worked together - for our good. One day all of this will make sense.

There are moments in life that seem 'fundamentally unfeasible' and although we don't know what God's plans for our lives are nor do we always agree with His timing, as it says in Hebrews 11, ..... it is impossible to please God without faith and Jesus himself said "Anything is possible if a person believes." Mark 9:23








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Waterbugs and Dragonflies

Quite a few people have been asking me about the significance of my latest tattoo. I thought I'd answer here.

I love tattoos and love them to have significance for me. I posted here (http://definingmomentshope.blogspot.co.uk/2012/02/hoping-for-spring.html?m=1) about the last tattoo I got about 20 months ago.

My latest one was inspired by a book that Samuel was given when Emilie died. He still has the book next to his bed and whenever he sees a dragonfly - or an image of one - he tells me it reminds him of his sister. I'll let the story do its work:

Waterbugs and Dragonflies
by Doris Stickney


Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they werevery busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in goingabout. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you think she is going?" Up, up, up it slowly went....Evenas they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return...
"That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second... "Where do you suppose she went?" wondered a third.
No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea". The next oneof us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."
"We promise", they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew whatwas happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.
When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silverwings and a long tail. Even as he struggled, he felt an impulse to move his wings...The warmth of the sun soon dried the moisture from the new body. He moved hiswings again and suddenly found himself up above the water. He had become a dragonfly!!
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad torest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurryingaround, just as he had been doing some time before.
The dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why." Without thinking,the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water...
"I can't return!" he said in dismay. "At least, I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my newbody. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."
And the dragonfly winged off happily into its wonderful new world of sun and air.......





So - my latest tattoo is a permanent reminder and testimony of the fact that I will see Emilie, and my other babies, again. One day I'll be able to look back and all of this will have been made new.

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1 Year, 9 Months, 28 Days.....

1 year, 9 months and 28 days...
95 weeks
667 days
16,008 hours
I should have a nearly 2 year old now. A walking, talking, temper tantrum throwing, food refusing nearly 2 year old.
I can't believe how quickly the past year and 10 months have gone. From the sheer torture and pain of grief to learning what a 'new normal' is, rebuilding our lives and now moving forward in what we believe the plans for our futures are.
There are parts of the past (nearly) 2 years that I simply can't remember. There are huge chunks of cloudy and blurred memories and I struggle to work out timescales or order of events over, certainly the first half of, the last 2 years.
That blurriness and haziness has gone now but the pain and loss are still there on a daily basis; not as close to the surface as they were and much easier to manage but still there. Pregnancy announcements still sting as we try hard to grieve the loss of the dream of a bigger family and learn to be content with one biological child but we are gradually learning this contentment. It is not something that will come over night and, as my closest friends will know, there are days when I am at peace with the finality of the situation and other days when the pain creeps up on me unawares and I will have a day, or days, of seemingly unexplained emptiness before realising that there may actually be a trigger; maybe the approach of an anniversary of loss, another due date come and gone, a hospital appointment, negative test results, the thought of the 'what could have been' moments.




And then something happened in our lives about 2 months ago to make us sit back and reassess the situation. We felt God whispering into our lives to trust him as our lives took a very unexpected turn and so we began, once again, on a path that we hadn't chosen for ourselves. It is a path that still has the potential to cause us immense pain but is also a path where we have already seen incredible blessings and joy poured out into our lives. At the point of this event we both, independently to each other, came to the same decision; a decision that could have been shattering to the other had it not, as we believe, been a God inspired decision. We decided to stop trying for a baby and we are at peace with our decision.
I can't fully explain this sense of peace as it does not take away the pain (and sometimes jealousy) that I feel but it reassures me that we are exactly where we are meant to be at the moment. This point is also something that has taken me 1 year, 9 months and 28 days to get to and I am glad to finally be here.
We still need all the people around us who have supported us over the past (nearly) 2 years and who have helped us to be accountable to them. We need reminding of God's timing, of His plan, of the sense of peace we have felt with our decision, of words that have been given to us and of where we have come from to get to this point. But most of all I need reminding that 1 year, 9 months and 28 days is not long enough for people to forget our daughter.