The Dedication Service

What a special weekend!!! Yesterday was Jon’s birthday and also the dedication* service of our two beautiful children. It was a great day, and it was lovely to see the church packed with all our regular friends who attend, but also precious family and friends who came especially for the service.

Jon and I were a little bit nervous about sharing our journey in front of a packed church, but we felt it was important to get it out there. We shared about our struggle to conceive with Emelia and our somewhat difficult pregnancy with Asa and the diagnosis of Down’s syndrome after his birth. In addition to sharing our faith publically, it was also good to know we were raising a little bit awareness of Down’s syndrome.
(If you’d like to see our notes that we used yesterday, I’ve included them at the bottom of this post… I’m the sort of person that likes to write most things out in full, read it several times, and then glance through notes as I’m speaking, so I’ve left the whole ‘script’ there for you!)

Thank you to everyone who came and who committed to praying for our family as we raise Emelia and Asa the best we can, according to Christian principles. Thank you especially to our friends Matt Lewis and Roger Newberry who were heavily involved in the service itself, and to the catering team who provided a fellowship lunch afterwards!

You can listen to the sermon part of the service here. This sermon, by Matt Lewis, addressed the issue of doubts and how they can actually strengthen our faith. It linked it lovely to the dedication service and Matt did a great job, as always.

*A note on child dedication: As Christians, ironically we don’t want to christen / baptise our children as we believe the choice to come to faith is for our children to make for themselves. Because someone has been christened, it does not automatically mean a person is a Christian. Instead we and our church believe that child dedication is right for us. The service is basically to give thanks to God for blessing us with our children, to commit to raising them in a Christian home, to commit to pray for them and an opportunity for the church to stand with us to commit to pray for our children and help raise them.

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The notes from our testimony in the service…

Our Story

JON: We got married in July 2005, and we happily enjoyed our freedom, holidays, and having spare money!

In 2007, we decided we’d have a big ‘last holiday of a lifetime’. After spending 7 weeks in Argentina and South America, we decided that when we’d return home that we would like to start our family. We (well, Lizz) had it planned out. We’d be home in September, pregnant in December, so the baby would be born in September 2008. Sorted…

LIZZ: But God had other plans! We can make all the plans we want, but ultimately GOD in is control, NOT US!
21 months later, we were expecting Emelia. We were so excited! We were on yet another ‘last holiday of a lifetime’ in Costa Rica when we had a positive pregnancy test! Ironically, just before we left for holiday, we’d been in to see Dr Evans, the infertility doctor in UHW, for our third appointment and test results. She confirmed that we’d be unlikely to conceive naturally and we joined the waiting list for IVF. Little did she know that God is above all and does miracles. In fact I may have even been pregnant in that meeting!

JON: The pregnancy was ‘textbook’ really. Lizz felt constantly sick during the first three months and developed a very sensitive sense of smell, especially towards peanut butter, green peppers and coffee! The smell of peanut butter in particular gave her quite a strong reaction!…

The rest of the pregnancy was great. We loved the baby’s movements, even at 3am, Lizz would wake me to tell me the baby was moving around and ask did I want to feel it. Lizz loved being pregnant!!

Emelia Grace Shaw was born 19th April, 2010, 11 days early – that’s not like her parents! She was beautiful, although she did look alarmingly like my dad, Ray! After they spent 2 nights in hospital, I brought my wife and new baby home with me. What a huge responsibility we faced. [Feelings at the time?]

LIZZ: Emelia brought us lots of things as a newborn – like joy, tears (ours and hers!), colic, laughter, tiredness – just like any other baby really.She is now almost 3, and she has grown in to a wonderful little girl, who is adorable, funny, cheeky, chatty, cuddly, and rather independent! She loves coming to church and seeing her friends, and usually makes a beeline for the older girls in the church like the two Abby’s, Shanisha and Hannah! I just hope they don’t mind her tagging along!

We are truly blessed to have this beautiful girl in our life.

JON: In early October, 2011, we were pregnant again after the first month of trying. We felt it was a miracle, because this time there wasn’t the same heartache and longing as before. Again, Lizz constantly felt sick for the first 3 or 4 months, and had the same sensitive nose as before. This time she even went off Chinese food! Isn’t it bizarre how pregnancy can change a woman?!

We announced the pregnancy to our friends and family the week before Christmas, the same time as Rod & Ellie announced the news of their twin pregnancy! We were thrilled that these unborn babies would have playmates close in age as the babies’ due dates were two weeks apart!


LIZZ:
On December 29th 2011, we had our 12 week scan at Llandough hospital. Before we were called for the scan, we noticed a room to the side that had a settee, table with a box of tissues on and a midwife’s desk. We commented rather flippantly to each other that this was probably the ‘bad news room’ and little did we know that we were to be sitting in that very room about half an hour later.

The scan itself was going well, until it showed the baby might have a build up of fluid on the neck… More scanning revealed that Asa had a possible cystic hygroma – a water filled cyst on the neck.

JON: As Lizz said, we were then shown to the little side room, and a midwife soon joined us. She explained that a cystic hygroma could mean a few different things. She referred us to the Fetal Medicine Department at UHW – the earliest they could see us was the following week. It was an emotional and anxious week of waiting, praying, worrying, more waiting and more praying!

On the 4th January 2012, we met the specialist midwife, Gill. She explained in more detail about what a cystic hygroma meant. We also met the consultant, Dr Beatty. We were given some awful statistics that has stayed with us, especially Lizz… We faced a 50% chance of our baby having a chromosome abnormality, the most common is Down’s syndrome.


LIZZ:
We were given the option to have CVS or an amnio, which are both invasive chromosome testing that carries a small chance of causing a miscarriage. Being Christians, we felt that we did not want to endanger the life of our baby because he or she was given to us by God. The third option we were given was to seek a termination, which again wasn’t something we even considered. The final option was to have regular scans and close monitoring, which is what we chose. What was perhaps one of the most upsetting parts of this pregnancy was that we could have asked for a termination up to 32 weeks, despite not having an actual diagnosis. I wonder how many babies have their life ended deliberately when they have been typical and healthy babies. Only 6% of babies diagnosed with Down’s syndrome in the pregnancy are actually born; 94% will be terminated or not survive.

JON: We had scans and appointments every 4 weeks or so throughout the pregnancy. At 20 weeks we had the normal scan that all babies have, and we were told the baby was normal in structure, which pretty much ruled out physical abnormalities, however, we still faced a high risk of Down’s syndrome.We were told there needed to be a detailed heart scan at 24 weeks which revealed a possible heart problem as the heart was tilted more to one side. Further scans showed the heart was normal, but the heart would be scanned once he or she was in the world. We cannot fault the amazing service of the fetal medicine staff.

LIZZ: When we were having the heart scans, I did wonder whether our baby had Down’s syndrome. And even with the very high risk that we faced, I still wasn’t thinking it would really happen to us, even though I was terrified there was something wrong with our baby. Several times throughout the pregnancy I felt so distressed that all I could do was cry and cry to God, usually when Jon wasn’t around as I was embarrassed. I was constantly amazed at how God provided much needed encouragement for me during these difficult times – a friend might ‘randomly’ send a message, or a worship song would be put on facebook, or a Bible verse would be given to me. To be honest, If i didn’t have this relationship with God, I’m not sure how I’d have coped…

JON: Asa Jonathan Shaw was born exactly a week early, on the 6th July 2012 at 8.02pm. The labour was very quick, with Asa arriving 20 minutes after getting to the hospital! After this birth, it was evident he had swallowed meconium (baby’s first poo). A few minutes after he was born, he was taken to the neonatal unit as he had breathing difficulties and needed the C-PAP (breathing machine). We weren’t able to hold him, which was very sad.

Later that evening when we finally got to see our son around 11pm, he looked very different. He looked swollen and he didn’t look like our son. Lizz asked the nurse caring for him whether he had Down’s syndrome. She confirmed that he had some of the usual features of Down’s syndrome, but that a doctor would see us the next day.

LIZZ: That first night of Asa’s life was extremely painful. I have never felt so alone in my life. I was missing Jon and Emelia terribly, and being separated from my newborn baby was heartbreaking. It remember thinking that it didn’t seem fair that he may have Down’s syndrome AND be poorly in Intensive care. I prayed and prayed, and prayed some more, singing worship songs and hymns through the night, in between dozing and being woken for my obs.

The next day the doctor met with Jon and I, and confirmed that he thought that Asa had Down’s syndrome. It seemed like all our dreams had been shattered and we were devastated to be honest. We gave consent for the necessary bloods to be taken to test Asa’s chromosomes, signing the forms in a haze, trying to appear strong.

That night when Jon left me alone in the hospital was also a very difficult night. I don’t think I’ve ever cried so much in my life. Those first 2 days of our son’s life I could barely stop the tears flowing. My eyes remained puffy from lack of sleep and salty tears. I’m rather embarrassed to admit this to you as I still feel guilt over my initial reaction to this news…

If I could go back in time, I would change our approach in the pregnancy and our reactions to Asa’s diagnosis – I would have done our research on what life with Down’s syndrome is like today. I would have seen that in fact Down’s syndrome isn’t so scary after all. I would have seen that there is a lot of support for kids with Down’s these days, that most go to mainstream school, pass exams, have jobs, have relationships and live normal lives, just like their peers.


JON:
On the 13th July, Asa was diagnosed with Down’s syndrome – or trisomy 21 as its also known. By this time, we knew it for ourselves, we saw it in his eyes. It was no big surprise by then. Asa was still in the neonatal unit, in intensive care. He had an infection due to him swallowing his poo, a seizure 24 hours after birth, stomach aspirates and problems feeding. He had an NG tube fitted, and needed stomach and bowel x-rays. Asa remained in the neonatal unit for 4 weeks and 1 day, coming home on my mum and dad’s golden wedding anniversary – what a nice surprise!


LIZZ:
Here we are now, 8 months later. Asa is just our healthy baby boy. He already has a great personality, he is always smiling (well, most of the time), and adores his big sister…but maybe that will change if Emelia tries to put make up on him, dress him up or pinch his toys – just like any other sibling relationship!

We know that regarding Asa’s Down’s syndrome that there will be difficulties ahead, we’re not naive to think otherwise, but Down’s syndrome does not and WILL not define him. It is just a part of who he is. He doesn’t ‘suffer’ with Down’s syndrome, nor is he ‘a Down’s baby’. He is just Asa. Our son.

The song that Lorna sang earlier was such a challenge to me when I first heard it when Asa was still in hospital. Each time I listen to it, it is challenging – and changing – my perceptions of what a blessing from God means. Sometimes we ask God for seemingly ‘good’ things, like health and protection, but what if God has other plans for us and we just can’t see it? This doesn’t mean that God hasn’t answered our earnest prayers; it just means He has a better way.

This song challenges what we think of as blessings. What if blessings come through unexpected things? What if blessings come from painful situations we need to go through? God knows what is best for us and He is in control. I don’t have all the answers. I know that God has a purpose for Asa, just as much as He does for each of us. I know that Asa, like Emelia, will be a blessing to us. That he will teach us many things. That our life is going to be a little different than expected, a more ‘scenic’ route perhaps. But that is ok. We will be ok! We ARE and will be, blessed, in ways we can’t yet even imagine…


JON:
We’re grateful to God for giving us these two wonderful children, we are incredibly blessed. We have a great support network here in Bethesda and with our families, who will help us raise our children to know and love God. We’re so grateful for all the love and support that has been shown to our family. Thanks everyone for coming today, and making our day so special.

If you’d like to follow our family’s journey, particularly about Asa and Emelia, then feel free to check out our BLOG at down with Asa.com

Looking Back, Looking Up.

I am behind with this blog. I am still catching up from a while ago – I scribble down notes, or make a quick rough draft in Microsoft Word, and finalise it when I can. Part of the problem is that Jon and I can’t decide on a name for the blog! Get your act together Lizz!

[Author’s note: We finally decided on Down With Asa, one of the first we ever thought of! Funny yet frustrating]

Tonight I have been working on the timeline of Asa’s life so far, from the pregnancy through to now. Simultaneously, I have also been working on the pieces of the puzzle that made up the prenatal potential diagnosis of Down Syndrome, through to receiving the confirmation a few days after Asa was born.

As a result, it has been an emotional night reflecting on Asa’s journey through the pregnancy and those early weeks in the Neonatal Unit at UHW. It always happens when I’m working on the blog. Going back over those memories that would prefer to stay hidden in the deep, dark place of my brain.

Tonight I’ve been reliving the moment we found out there was a possible problem and the awful statistics given to us that are forever burned into my heart. 50% chance of a chromosome abnormality, 10% chance of a heart defect (but no chromosome abnormality), 15% chance the baby would not survive (e.g. miscarriage or being stillborn), 25% chance of no complications and a typical, healthy baby. When we were first given these statistics, I saw them every time I closed my eyes, in bright yellow lights. It was awful. Now I am thankful that these memories are fading, and that God comforts us.

“He [God] tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.”

~ Isaiah 40 v 11

So while those horrible memories and statistics are at the forefront of my mind again as I work steadily on Asa’s story, we can move forward in the knowledge that both our children are perfect, healthy, and so very precious… Also in the knowledge that we have an awesome God who never, ever leaves us, and who is gently guiding us.

Shattered Dreams?

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Unable to hold our son that night... :-(

Three months on, and I still see these images in my mind… How bittersweet those first few days were.

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I love the devotionals and blogs written by ‘Girlfriends in God’. These three women write so beautifully for Christian women about faith, life and love, and everything in between. It’s for parents, for busy professionals, for young women and older – for women everywhere.

I don’t read these devotionals every day. Today I read the post from 3rd October. I found this post so moving, so inspiring, so helpful. It’s about shattered dreams that we may face. This may take various forms, such as a divorce, the heartache of infertility, the death of a child, or losing one’s job, and so on.

Here is a snippet from the devotional:

“Every day I receive emails from women who have had their dreams shattered. A husband has an affair, becomes addicted to pornography, abuses the children, or deserts the family. A child gets caught with drugs, becomes pregnant, or dies in a car accident. Parents divorce, friends betray, careers come to an abrupt halt. The list is endless. So what do we do when our dreams are seemingly destroyed? The answer to that will shape the rest of our lives.

 

Does that mean we give up our dreams? I can promise you this, whatever dreams you have for your life, God’s dreams are greater. The power of the Holy Spirit the disciples received after Jesus’ resurrection, and the impact they made on the world thereafter, was beyond their wildest dreams. That’s what God does with a heart that is wholly yielded to Him. That’s what He does when we give our shattered dreams to Him. I have learned to stop saying, “Why me?” but instead start saying “What now?” ”

***

When Asa was first born, it was incredible – now we had a baby boy and a little girl! This is the dream right? The dreams we had… Daddy would play football with his boy, teaching him to kick the ball, to ride a bike, to love God. Mummy would choose some adorable little outfits, pray with and for him, wash football kits. Emelia would tease her baby brother, try to dress him in girly clothes, force him to wear makeup or play hairdressers… Perhaps!

Later that night, in the Neonatal Unit, the nurse told us that our perfect little boy had some features of Down’s Syndrome and that the doctor would meet with us tomorrow to discuss it.

*BOOM* – shattered dreams. Would Asa ever get to play football with his dad? Would he be sporty at all? Would he…? Would he…? Would he…? The questions in my mind kept coming. That was possibly one of the worst nights of my life (other than the second night in hospital). My baby was not with me, and was poorly, fighting for oxygen and fighting an infection upstairs in the NNU. My husband was not with me – he was home without his wife and new child. My daughter was not with me – to make me chuckle or distract me from my pain. My God – yes He was with me. Thankfully He is always with me. The Bible tells us He never leaves us or forsakes us (Hebrews 13 v 5), and I know that to be true firsthand.

 P1080936Daddy and his boy, aged 2 days old.

The next day, Saturday 7th July, we met with the doctor who confirmed his suspicions of Asa’s DS. We signed the consent forms for the necessary chromosome testing in a haze, a fog of fear, of worry and of pretending to be fine. I can honestly say that Jon and I thought our dreams were shattered. That second night I sobbed and sobbed, praying God to take the DS away, feeling utterly terrified and alone. What made it worse was that night Asa had two seizures and the doctor couldn’t tell me why.

While pregnant, even though we knew our baby faced a 50% chance of having DS, we didn’t really think it would happen to us. How arrogant we were. How ignorant and foolish. I wish with all my heart we had done our research… We would have seen that our dreams needn’t have felt like they were shattered. I wish then what I know now. That DS isn’t the end of the world. But I can’t go back in time and change that initial reaction. Those ‘bad’ days are lost forever, and I feel guilt for not fully being there for my son. I adore Asa, we both do. He is his own person. DS doesn’t define him. Our dreams for him are similar to Emelia’s – for us to raise him well, for him to be happy, to love God, to go to school and learn, to fall in love and to be loved. Are any of these dreams sounds familiar for your children?

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Sometimes life throws us a curve ball – something that we don’t expect, or imagine, or want, or know how to deal with… Stresses come. Illnesses happen. Death steals. Sin destroys. Yet there is one thing we can do – we can stop saying “why me?” and ask God “what now?” Trust in Him, lean fully on Him with all your heart and go with it.
(It’s ok, I’m telling myself this too, not preaching to you!)

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Our First Few Hours (Part One)

Welcome to our blog! :-)

We are starting this blog while our little baby boy lays in the Neonatal Intensive Care Unit (NICU) at the University Hospital of Wales, Cardiff, or UHW for short.

We arrived at the hospital just in time, with 20 minutes to spare! Time for a quick photo though!

We arrived at the hospital just in time, with 20 minutes to spare! Time for a quick photo though!

PART ONE:

Asa Jonathan Shaw was born on Friday 6th July 2012 at 8.02pm, weighing 6lb 9oz. We arrived at the hospital 20 minutes before he was born, yikes! Labour had progressed very quickly. In the 20 minutes before he was born, the midwife monitored Asa’s heart and he seemed to be a bit unhappy. When my waters were broken by the doctor, it was apparent that our precious little boy had emptied his bowels, most likely due to him becoming distressed at the very quick labour. Whilst the doctor was rushing to put the heart monitor on to our unborn baby’s head, out came our little Asa to greet the world. I went from 6 to 10cm in a matter of minutes! You hear about babies who ‘fly out’ – well, he was one of those babies! Doctors came running in. I was as ‘high as a kite’ on gas and air and feeling very confused.

Asa had swallowed ‘grade 3 meconium’ (the new baby poo!) while still inside me, which resulted in him having difficulty breathing. It was a very scary time. I don’t remember him crying. He needed help breathing and had an oxygen mask on. About 5-10 minutes after he was born, he was wheeled over to us very briefly, where I gently stroked our new born’s cheek before he was taken to the NICU as he needed to have the CPAP breathing machine. The Doctor (Dr Mally) was lovely, very understanding. I asked a few times whether they could tell if Asa had Down’s syndrome. Each time they replied that it was too early to tell. (I’ll explain in another post a bit about the pregnancy and our story).

...Before he was taken to the NICU
To not hold your own newborn baby after nine months of carrying him/her around and experiencing the pain of labour, is a very difficult thing to endure. A very unnatural thing. The midwife, Emily, was fantastic, and was very reassuring. She told us that after I had a few stitches

I could shower and we could see our son. Hooray!!! While I had a cup of tea and some toast, Jon was busy texting and calling friends and family to tell them our good news!

Seeing Asa properly for the first time in the NICU was upsetting yet wonderful. Upsetting because he had the CPAP mask on, laying in a warm neonatal incubator, with just a nappy on. His very first nappy that as parents Jon and I should have put on him. Upsetting because he didn’t look like our baby. Wonderful because here was our boy, at last, after a somewhat difficult pregnancy!

Unable to hold our son that night... :-(

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Today is the 13th of July, 2012. Our little Asa is still in the hospital. He has an infection due to swallowing the meconium. Plus he’s having lots of stomach aspirates and difficulty feeding, so he is currently fed via the NG tube. We miss him and want him home with us. It’s very hard.