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.


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!

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.

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.

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!

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…

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

Psalm 66

I read this Psalm 66 today. I love how sometimes you come across something you’ve read before, but see it in a different way. All my life I have known God is good. Everything He does is good. His very character is good. He does not make mistakes. Sometimes, life is not easy. I’m not referring to Down’s syndrome here, although I acknowledge that it has its challenges, both now and in the future! But life in general can be hard going and battle heavy for us all. For example; work, a toddler’s tantrums, the busyness of needing to get things done, motivation, exercise; the list goes on. It can be easy to slip in to a mundane routine and not appreciate or recognise God’s goodness amongst the trials or ordinariness of our tasks.


*BOOM* comes a reminder of God’s goodness. *BOOM* here’s a reminder of why it’s good to share our lives with each other. *BOOM* God is AWESOME – the Bible even says so! Loving getting ‘down with the Bible’!

Here’s the Psalm for you to read for yourselves. See what I mean?!

Psalm 66

Shout for joy to God, all the earth!
Sing the glory of his name;
make his praise glorious.
Say to God, ‘How awesome are your deeds!
So great is your power
that your enemies cringe before you.
All the earth bows down to you;
they sing praise to you,
they sing the praises of your name.’[a]

Come and see what God has done,
his awesome deeds for mankind!
He turned the sea into dry land,
they passed through the waters on foot –
come, let us rejoice in him.
He rules for ever by his power,
his eyes watch the nations –
let not the rebellious rise up against him.

Praise our God, all peoples,
let the sound of his praise be heard;
he has preserved our lives
and kept our feet from slipping.
10 For you, God, tested us;
you refined us like silver.
11 You brought us into prison
and laid burdens on our backs.
12 You let people ride over our heads;
we went through fire and water,
but you brought us to a place of abundance.

13 I will come to your temple with burnt offerings
and fulfil my vows to you –
14 vows my lips promised and my mouth spoke
when I was in trouble.
15 I will sacrifice fat animals to you
and an offering of rams;
I will offer bulls and goats.

16 Come and hear, all you who fear God;
let me tell you what he has done for me.
17 I cried out to him with my mouth;
his praise was on my tongue.
18 If I had cherished sin in my heart,
the Lord would not have listened;
19 but God has surely listened
    and has heard my prayer.
20 Praise be to God,
    who has not rejected my prayer
    or withheld his love from me!


I know that some of our posts recently have been somewhat ‘negative’ – please bear with us – we are learning new things and adapting to our new life, and with that comes the ‘ups and downs’. From the start, we vowed to be open and honest in this blog, to share the heartache, but also the great, exciting stuff of raising our two precious children. Yes, Asa has Down’s syndrome. But he is first and foremost our son – our adorable, smiling, happy, playful little boy. Emelia is also a joy – full of life, hilarious, fun to be with and beautiful. This blog is also about our faith journey too… So how well does this Psalm fit in with that?! Verses 5 and 16 talk about sharing what God has done – “come and see / hear”… That’s what we hope to be able to do, to invite you all in to our lives, in to our adventure. We are looking forward to sharing what God has been doing, and IS doing in our lives and in our church.

 P1090262A sunny autumn, family day at Barry Island beach…

Sadness yet Hope

Over the past week or so, the first line of this hymn has kept coming back to me time and time again: O Love that wilt not let me go”… However as I didn’t know the rest of the lyrics, I finally ‘googled’ it tonight. Oh, wow. This hymn could have been written by me if I was clever enough! It explains so much of how I am feeling (not all the time, but occasionally I allow the dark clouds to hang over my head) – the sadness, but also the hope and acknowledgement of God’s love, compassion and goodness.

Although it’s an old hymn, I love this new version by Indelible Grace – click here to listen.


O Love That Wilt Not Let Me Go
George Matheson (1882)

O Love that wilt not let me go,
I rest my weary soul in thee;
I give thee back the life I owe;
That in thine ocean depths
Its flow may richer, fuller be.

O Light that followest all my way,
I yield my flickering torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze
Its day may brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

 O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.


Some photos from Asa’s tummy time earlier this evening – he’s doing so well with this!




Let Me Be Singing When The Evening Comes

10,000 Reasons (Bless The Lord)
(Matt Redman, 2011).

Bless the Lord, O my soul, O my soul
Worship His holy name
Sing like never before, O my soul
I’ll worship Your holy name

The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

Bless the Lord, O my soul, O my soul
Worship His holy name
Sing like never before, O my soul
I’ll worship Your holy name

You’re rich in love, and You’re slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

Bless the Lord, O my soul, O my soul
Worship His holy name
Sing like never before, O my soul
I’ll worship Your holy name

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore

Bless the Lord, O my soul, O my soul
Worship His holy name
Sing like never before, O my soul
I’ll worship Your holy name
Jesus, I’ll worship Your holy name
Lord, I’ll worship Your holy name

Sing like never before, O my soul
I’ll worship Your holy name
Jesus, I’ll worship Your holy name
I’ll worship Your holy name!


I was singing this wonderful worship song from the Sunday before Asa was born til the Friday he was born; it consumed my heart and my thoughts, and I found myself constantly humming or singing it. We sang it in the Communion and worship service so powerfully the Sunday before he came in to this world, followed by an awesome sermon by Matt Lewis – I can still feel it in my bones! It was about, in part, healing, and I remember choosing to worship God for who He is & not what He had or hadn’t done. ML said that if God doesn’t heal then He has something better in store – God’s ways are better than our ways and He knows what He’s doing. I remember secretly thinking that our baby probably had DS and that God was able to fully restore our baby if that was His will, but equally, that He might not…and I decided to praise God anyway. Looking back, I had quite a few gentle whisperings that our unborn baby would have DS, but at the time I didn’t ever firmly acknowledge the possibility. It’s often only in hindsight that we can see the hand of God in our life – and ‘get it’.

If you wish to listen to Matt’s sermon, you can find it here. The part about healing comes just over a third of the way in to the sermon, but I’d recommend listening to the whole thing – why not grab a cuppa or put it on while doing some housework?!

Oh, I’ll be honest with you all, when we had the DS diagnosis confirmed, I begged God to heal and restore Asa – I’m no saint – and He has in some ways, like his heart, the infections he had & I think his hearing probably would have been worse if it wasn’t for our Healer intervening after my sobbing prayers, but alas his DS remains.

This song, above, is so precious to me – whatever life throws at us, His people, let us still be singing His praises at the start & end of each day, acknowledging His goodness despite difficult circumstances… Worship His Holy name!