Donkeys, Reflux and Love

The sun is shining in Paignton. We’ve had a lovely time on the church weekend away so far, and today is our last day. It’s also been a bit stressful. Both Emelia and Asa were unsettled on Friday night – Emelia was awake until about 11.45pm. Asa was being a monkey and rolling over in his travel cot every five minutes. I was confined to the hotel room in the dark, with no wi-fi or phone signal. I suppose being somewhere new, and everything being different, most children would be the same.

With that behind us and a fresh start the next day, we were able to enjoy some of the teaching from Simeon Baker, our guest speaker. We had a free afternoon yesterday, so we headed to a lovely restaurant for lunch as a family. The venue had beautiful views from its elevated position overlooking the pavilion and the beach. After lunch, Emelia joined the other children from church in the park while we tried to rock Asa to sleep in the pram! Donkey rides were also available – and as you can see, Emelia seemed to enjoy it!

20130420_15391920130420_15374220130420_153714
Emelia’s friends, Shanisha and Evie, also enjoying a donkey ride!

***

I’m going to take a moment to be open and honest with you, friends. Last night, Asa’s reflux was really bad. Vomiting everywhere. I couldn’t escape the smell of sick as it was on my scarf, t-shirt and trousers, not to mention on his bib and sleepsuit. I was teary and snappy with Jon and I wish with all my heart I didn’t take my frustration and hurt out on him. I’m not proud of how I react sometimes, and I more aware than anyone of how impatient I am, and how quick I am to get angry. Sometimes when I’m super-stressed, particularly lately, I’ve sadly been questioning God and why He chooses sometimes not to answer our prayers, especially ‘good’ prayers for healing for a loved one. I say ‘sadly’ because my faith has usually, nearly always, been strong…

At times when the reflux is bad, I cry out in prayer to God for him to heal Asa. Literally, cry. But for some reason, He doesn’t… This isn’t a prayer for material things, for more wealth or power, or personal gain, but for my precious little boy. I know it’s not ‘a big deal’ in the grand scheme of things related to Down’s syndrome, but it affects me, stresses me and upsets me, not to mention Asa. I wish I was stronger, more resilient, more trusting. Friends, at times, I feel so alone, even abandoned by God – and it upsets me that I would even have these feelings. As a youth leader in the church, I often remind the young people that we cannot trust our feelings. They fluctuate and are not always accurate reflections of how things really are. Sometimes, my heart and my head are in opposition, but I plod on anyway, rebuking the negative thoughts that occur in my questioning. Therefore, I have to keep reminding myself that God IS good. That I am NEVER abandoned by Him. That He sees our family is hurting, feels our pain. That He walks with us through the good times… AND the bad times, the disappointment and mire of our troubles.

This leads me on to Simeon speaking in communion this morning. He spoke for only five minutes, but it was as if God was speaking directly to me through him. He spoke on two verses. Yes – Ephesians 5v1-2:

“Follow God’s example, therefore, as dearly loved children and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.”

The key part of the message that my heart thirsted after was this phrase, dearly beloved children”. It struck me so powerfully that I began to silently cry as I listened intently. God was clearly showing up for me, reminding me – and everyone there – that He does love us. He calls me ‘dearly loved’ and that is so amazing, that the God of the heavens and the earth loves me, despite my many flaws and sometimes wavering faith. What’s more amazing though is that He calls me ‘child’. I am His, and He is mine. My perfect, wonderful, awesome Father in Heaven calls me His.

I am so grateful for Simeon bringing these truths out this morning. It was exactly what I needed. Don’t we all just need that reminder sometimes? That we are loved, precious and worthy. You, reading this, are loved by God as a dearly loved child. Take a moment to absorb that fact, and praise Him.

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!


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

Beaches and Sunsets Are Made For Each Other

Today, we spent the afternoon at Southerndown, perhaps one of our favourite places – the cliffs and the beach, the scenery and the rural walks – beautiful. We took a picnic but as it was rather cold to sit outside, the four of us had our lunch in the car at the top of the cliff. We decided after lunch that we would move the car to the bottom car park so it would be less walking for Emelia and pushing the pram. However, the car refused to start. Yikes! Some kind people gave Jon a hand and eventually it got going again. Afraid it wouldn’t start again, we agreed that one of us would stay in the car with Asa, and keep it running. Jon and I took it in turns to walk with Emelia on the beach. The sun was setting as we were walking. Beaches and sunsets are made for each other, a bit like jelly and ice cream, flowers and vases, icing and cake – like Jon and I, and our lovely children. We are made for each other. How I love our little family!

P1090745 P1090742

Today has been a lovely day, spent marvelling at creation, eating, laughing and making memories. It’s a bit like the calm before the storm, as we know January is going to be very busy. Already we have 10 appointments for Asa lined up and one for me! Over the next few weeks, Asa will see the ENT (ear, nose and throat) specialist about his stridor (noisy breathing), physio, the community paediatrician and blood tests, feeding clinic, portage (child development / psychology service), audiology MAP (Multi Agency Planning), and in two weeks time, we will start at the ‘Speak and Learn’ communication group for children with Down’s syndrome. Most of these appointments require child care for Emelia, so thank you to friends and family who have already offered.

So, as we embark on a new year, we are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We’re counting our blessings (namely two that go by the names of Emelia and Asa), and praising God for his goodness and faithfulness to us now, and in the future. To our friends and family, happy New Year! xx

Tiptoe To The Edge

Tiptoe to the edge

I saw this picture on a friend’s Facebook wall recently… (I can’t therefore credit the artist here, although I can see ‘Freya’ written in the corner). I really want a copy of this picture!

To me, it’s a picture of God and I. He is the daddy bird and I am the baby bird. Since Asa was born, life (for me, anyway) has been lived in a bit of a fog, with muddied emotions, hurting hearts and challenged faith. But through it all we have known and experienced God’s presence. One of the hardest parts of our journey so far has been acknowledging Asa’s hearing loss. Now we can put on Asa’s softband without getting upset, we can focus on moving forward. Our family is still rather new to the world of Down’s syndrome, but the world is still beautiful, Asa is beautiful, as is Emelia. God is patiently waiting to show me what’s on offer. I’m starting to think it’s time I launched myself, to take flight and soar with my Saviour.