Happy First Birthday, Archie and Ethan!

Today, we were invited to celebrate our friends’ twins’ birthdays. Archie and Ethan are little miracle babies. Their mum and dad endured a difficult pregnancy, full of uncertainties – they even faced the possibility they could lose one or both babies. These babies were covered in prayer by many people and God brought these precious lives through various life-saving interventions, out of danger, and they were delivered safely a few weeks early – tiny, but fighting and stronger than expected. After only one week, mum and new twin babies were allowed home. How amazing is God?! He continues to answer prayer so mightily! Today we got to celebrate their first birthday and thank God for their lives.

 

20130511_094853Asa was given this adorable little outfit by his great Auntie Sarah. I love the slogan, ‘Perfect Little Person’. People may look at our baby and see a chromosome disorder, but we look and see Asa – our gorgeous, funny, happy little boy. He isn’t perfect because we all have sin in our life, but he is perfectly ours, perfectly formed and perfectly loved by a Creator God who doesn’t make mistakes.

20130511_164508Asa loved watching the other children bouncing away.

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Evie is Archie and Ethan’s big sister – she is almost three. I’ve heard it said that ‘friends don’t count chromosomes’ – Evie certaintly isn’t bothered as she cuddles Asa and plants a gentle kiss on his forhead!

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

Hearing Review – MAP

This morning we had Asa’s audiology Multi-Agency Planning (MAP) meeting at UHW. After a stressful time stuck in traffic and trying to park (one of the car parks was closed and it was absolute chaos – I was in tears!), I took Asa in to the hospital while Jon tried to park. I didn’t think he would be able to join me, but two minutes before we were called in, he arrived – phew!

I was a little nervous, as you might expect from me(!). This was our first MAP and it was all so new to us. Having Jon there with Asa and I was such a blessing. He is such a strength to me, a calming influence – my pebble. (I once called him my rock, and he replied that he didn’t think that was the case, and that he was more like a pebble than a rock, so it has become our little joke!).

We met with the hearing doctor, speech therapist, teacher for the hearing impaired and two audiologists. Most of the people we had already met and they were so friendly and welcoming. We discussed Asa’s hearing, whether he is wearing the softband regularly, what sounds he was making, the use of Makaton and any concerns or questions. Also Cath, the teacher, gave her report. At the moment, Asa’s favourite (read: only!) sounds (other than crying, giggling and wind!) are the ‘raspberry’ and a long vowel, ‘ahhh’. Everyone seemed pleased that Asa was making small progress with his sounds and Lowri, the speech therapist, even thought she heard a ‘b’ sound from Asa that we’d never picked up before. Subtle sounds aren’t easy for us amateurs to pick up on!

We asked Dr Roberts, the hearing doctor, whether Asa might now be suitable for conventional behind the ear hearing aids. Upon examination we were informed that Asa’s ears are still too small and so it’s not feasible. I must admit I was rather disappointed. The softband does help Asa’s hearing, but it’s hard work – it gives quite a lot of feedback when knocked or rubbed, especially if Asa is on the floor or in his highchair. I have to adjust it regularly as sometimes Asa pulls it, or it slips out of position. He also, somehow, manages to turn it off on occasions! But for now, it is the softband or nothing, and as we want to help Asa as much as we can, we’ll continue with it until a time when Asa’s ears are big enough for the alternatives.

The doctor suggested we do an impromptu hearing test because Asa was sat up with minimal support. Off we trotted to the testing room. I’m glad I didn’t know that this test was on the cards as I would probably have been very nervous and I’d have worried about it the night before! Asa sat on my knee and the audiologists looked for a response from Asa to show that he had heard a variety of sounds. When he heard a sound, he was quite consistent in his response – he stilled, eyes widened and if he liked the sound he would smile and move his feet. He seems to prefer high pitch noises such as ‘sh’ and ‘s’ and he smiled consistently upon hearing these type of noises.

The second test the audiologists did was a tympanometry – a test to see how freely the ear drum vibrates to conduct sound to the inner ear. Asa had one in September which showed ‘glue ear’ in both ears, resulting in a moderate hearing loss. Today’s test showed one ear ‘glue ear’ as expected, whilst the other ear showed some ear drum movement which implies there is less ‘glue ear’ than a few months ago. We know that ‘glue ear’ fluctuates (i.e. can get worse and improve throughout the year), but we also know we have a healing God! We’re praying the ‘glue ear’ gets less and less over the coming months and will remain that way!

We went back to the meeting room to discuss the results. Today Asa heard sounds at 45 decibels, wearing the softband. We were thrilled with this! ‘Normal’ speech level is around 50 to 55 decibels, so this test shows that Asa is probably hearing a very good range of different sounds needed for speech. It is interesting that Asa responded so well to the higher pitched ‘soft’ sounds such as ‘sh’ because previously the audiologists thought that this was the pitch of hearing he most struggled with. We are praising God for such a good hearing test today.

PRAYER POINTS:
If you are a Christian reading this blog and pray to God, then please join us in praying for Asa’s hearing, that the ‘glue ear’ would decrease and that his hearing would improve in order to develop good speech.

Some photos of Asa enjoying his tea later on that day…

P1090823 P1090824I think Asa is quite proud of the mess… He certainly looks very contented!!!