The Waiting Room Conversation

This afternoon I was at the Doctors (aka my second home!) for a double appointment for Asa’s reflux and my gallstones. In the waiting room, an older gentleman asked me to turn the pram towards him so he could see baby Asa. We were chatting about his grandchildren and my children. He was looking adoringly in to the pram and saying how lovely my baby was. I took the opportunity to tell the man that Asa has Down’s syndrome. I could tell he didn’t know! His reaction was something along the lines of, “I’d never have guessed, with some of them you can tell straight away can’t you? But he doesn’t look it.” This is my point – what does Ds look like? And what did he mean by “he doesn’t look it”? Shouldn’t it be instead, “he doesn’t look like he has it”? Asa isn’t Down’s syndrome, he was born with it, he has it. It is a part of him, not defining him. These are just my jumbled thoughts, apologies if it doesn’t make much sense!

The gentleman was nice enough, and kept saying “oh I hope your little boy will be ok”, “I hope he’ll be healthy”. It was a little frustrating, because even though I kept saying, “Yes, actually he is healthy.” I must have reiterated this point three or four times throughout our conversation. He then told me about a man with Ds he knew when he was younger, and the man died young. (Good job I wasn’t in need of any encouragement!!!). I explained that each person with Ds is different and needs vary from person to person, just in the typically developing population! Asa is healthy. Down’s syndrome is not an illness. Yes there are certain complications that can arise with Ds, such as heart problems, thyroid function, issues with hearing and vision, as well as mild to moderate learning difficulties. A very common feature of Ds is low muscle tone, which can cause gross motor skill delays, such as sitting up and walking, and can have knock on effects on internal muscles. A person living with Ds may have every single one of these characteristics, or just a couple. Asa has a moderate hearing loss (which we think has improved lately) and reflux (possibly due to low muscle tone), but this does not make him unhealthy.

It’s always great to take these opportunities to challenge misconceptions and myths about Down’s syndrome. I actually quite enjoy having these discussions with people. I didn’t get the man’s name, but I hope he took something positive away from our conversation. One more person in the world has hopefully had some preconceptions challenged. One more person got to look baby Asa in the eye and see that Down’s syndrome isn’t something to be feared.

My boy and I – we’re myth busting, one person at a time! :-)

“We Know What We Are But Know Not What We May Be”

Since January, I have had recurring gallstone attacks. The pain is often unbearable, and most of the time, I would rather experience labour again than these attacks. Honestly! Many of you will have gallstones too, but will remain unaffected. Every now and then, these gallstones block the main duct of the gallbladder resulting in this horrendous pain that cannot be alleviated by the cocktail of prescription drugs I currently have. Emelia knows that sometimes mummy has a “very sore tummy” and she is so caring, so compassionate and so kind (usually!). A lot of these attacks have been on the weekend which means Jon is able to help out with the children and sort their meals. I should add here that the majority of these attacks come in the early hours of the morning, usually around 3-6am and can last anything from 1 – 8 hours, sometimes lasting on-and-off for a couple of days.

This weekend, I was ill again. Jon took the children out for the morning while I caught up on some much needed rest. When they all arrived home on Saturday morning, Emelia had made a card for me (ahead of Mother’s Day the next day). She rushed straight up to me, gave me a cuddle, handed me the card and proceeded to ‘take care’ of me. She brought me the remote control for the TV (she knows me well!), and came over with her Peppa Pig medical kit. Nurse Emelia was brilliant and gave me a thorough poke and prod!

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Jon took the children over to the church for an open day. This lovely photo was taken by the very lovely Bethany Newberry – thanks Bes!

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Emelia taking care of mummy! (This is not my finest photo – remember, I was poorly!!)

Emelia’s kindness made me wonder about her future career. Lately, I’ve been more preoccupied with Asa’s future; what will he do? Who will he be? Will he attend college? Will he have a job one day? What kind of job might he have? This weekend, I have been thinking more about Emelia’s future. This little girl of ours is… well, where do I start? She is independent(!), caring, funny, assertive(!), chatty and compassionate. Seeing how well she ‘took care’ of me, I wondered whether she might become a nurse or a doctor. My best friend Amy is a nurse and Emelia often refers to her as ‘Nurse Amy’. Emelia would make a great nurse. She would also make a great entertainer of some kind, as she loves to entertain and put on ‘shows’ in the evening, singing and dancing around her piano. One of her favourite things to play with is her wooden kitchen and all the food items stocked there. She is forever having tea parties and ‘cooking’ – perhaps she’ll be a chef… She is very inquisitive too – always asking “why?” or exploring new places or things, so maybe she’d become a police woman, detective or work for the MI5 or MI6!

Then I moved away from thinking about Emelia’s career because, to some extent, it doesn’t really matter to us what she does, so much as who she is. We pray she’ll grow up to know and love God for herself, but this cannot be forced (nor should it be) – she’ll have to make that decision for herself. She is incredibly friendly and social, she loves running in the fresh air and she enjoys meeting new people, whether that is at the beach, park or soft play. She is funny and kind. One of my favourite things about her is that she regularly says “I love you mummy” and “I love you daddy” – and she even adds in sometimes “I love Asa” and my heart melts that little bit more. This little girl has a lot of love to give. I know that as both our children grow up that they will be very special to each other (among the usual sibling rows and complaints!). We’ve already seen how sweet and loving Emelia is towards her baby brother and we know she will be an amazing sister to Asa when they’re older too.

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I’m reminded of a t-shirt that a beautiful young lady, Natty, wears. The t-shirt has a quote from Hamlet:

“We know what we are but know not what we may be.”

To see the lovely Natty wearing the t-shirt, click here

How apt are these words? Asa and Emelia are individuals and no-one can know what the future holds for them, only God Himself knows that as He has a plan and a purpose for each of their lives. Asa has Down’s syndrome, that we already know, but the world is his oyster, just as it is for Emelia. Yes, we know things are going to be a bit different for Asa than they will be for Emelia, but opportunities are increasing for people with Down’s syndrome and the future is wide open! We are looking forward to seeing Asa’s personality, passions, creativity and dreams come out, just as much as we are with Emelia. We have such hopes and dreams for these two precious children of ours – and we hope you do too.

So to any parents of babies or children with DS, or if you have DS yourself, don’t lower your expectations, dream big! The world is your oyster. xx

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20130314_115014Later on in the week, I took Asa to his physiotherapy appointment whilst Nanny and Grandad Shaw looked after Emelia for me. Physio always seems to wipe poor little Asa out and he always sleeps well afterwards! How cute is he!!!

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After Asa’s physio, Nanny and Grandad Shaw had Asa while he napped so I could take Emelia to the park for some quality one to one time. Sometimes I feel guilty that I don’t spend enough time just ‘being’ with Emelia, so I love, love, love getting some time with just her. One of her favourite things to do is to visit the park – her smile is proof enough of that. What a beautiful smile she has! There isn’t anything much better than a laughing, happy, contented child. Jon and I are so blessed to have both our wonderful children in our lives. We are also blessed to have family and friends nearby who are willing to help us out with childcare. Thank you especially to Nanny and Grandad Shaw. :-)

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

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!

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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