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!

Hearing Test, April 2013

Why do I always get nervous attending the hospital for Asa’s hearing tests?!!

The old familiar ‘sicky stomach syndrome’ reared its head again as I drove to UHW, even though Jon and I suspected Asa’s hearing had improved. Walking in to the clinic, I was greeted by one of the audiologists who remembered Asa by name, immediately putting me at ease. Three minutes later we were called through to the testing room.

This time, the audiologists wanted to test Asa’s hearing without the use of the softband bone conductor, so they could build up a picture of the exact nature of his hearing loss. Today, he responded to sounds at 45 dB (decibels), which was the same as the last time in January. The difference between the two tests was that in January, Asa had worn his softband and today he didn’t. This shows that there is some improvement, however small, in Asa’s hearing. Normal speech is around 55 dB, although some speech sounds are quieter, such as ‘s’, ‘sh’, ‘th’, ‘f’ and higher in frequency. In other words, at the present time, Asa is responding to most sound levels and mid-range frequencies. Jon and I ‘test’ him at home regularly – one of us stands behind him, out of sight, and whisper ‘s’ or ‘sh’ and watch Asa’s reactions! He’ll be getting fed up of us sometimes. In fact, sometimes he doesn’t even respond to loud calls of ‘ASA’ – we think he’s protesting our amateur testing! :-)

The tymp test also showed his left ear is currently free of congestion (glue ear), but the right ear still remains congested although there may have been a tiny improvement. Glue ear can fluctuate though, particularly in Winter months. However, for now, we are praising God for these small improvements.

Asa’s next hearing test is the morning of July 16th.

Prayer points:

1. Praise God for the improvement in Asa’s hearing!

2. Pray that Asa’s hearing will continue to improve, that the glue ear completely resolves.

3. Pray that Asa’s speech will not be negatively impacted by his hearing loss.
(Other factors may affect speech too, so please join us in praying for Asa’s speech in general, that he would have good muscle tone to form the correct shapes and would be able to effectively communicate with everyone and be understood).

4. Pray that Jon and I would learn Makaton effectively and put it in to practice – we’re on a course in May – I’m excited!

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Thank you so much for your continued prayers for our little family :-)

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!

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

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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.

Baby Babble At Last!

TODAY, ASA STARTED BABBLING!!!

Unexpected.

Out of the blue.

Emotional.

Over the moon.

I didn’t realise how much I had been longing to hear those first few proper sounds come out of his small mouth. We were at the Harvester for Emelia’s birthday meal, and Asa just started babbling! He made a range of sounds, including ‘b(uh)’, ‘d(uh)’, da’ and even ‘m(uh)’, repeating them often.

I cried. I squealed with delight. I know this may seem a strange reaction for you, the readers of this blog. But as his mummy, I was so happy. I regularly pray for Asa’s speech development and was starting to worry that no sounds had been made, other than the favourite ‘raspberry’ and a long ‘ahhhhhhhh’ shout kind-of noise! I have often wondered with a tinge of sadness if / how his hearing loss might impact upon his speech and language development…

Today feels like a huge leap forward. I am looking forward with eager anticipation to Asa’s speech properly developing. I long to hear him say, “Hi mummy”, or “Goodnight daddy”. In fact, I am looking forward to this just as much as I did when Emelia was little. I am not naive to think his speech development will be plain sailing – children with Down’s syndrome often have delayed language skills and require speech therapy (hence the use of Makaton signs) – but today has given me hope that we are on the right track, however long it may take. I know he will get there. In his time. In God’s time.

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For our Christian friends and family… some prayer points if you’d like to pray:

– Praise God for Asa’s latest development and pray he’d continue babbling regularly!

– For Asa’s future speech development, that he would have speech that is clear so he would be understood by those he is in contact with as he grows up.

– For his hearing to improve (next hearing test is April 25th), so that it would not be a barrier to effective communication.

– For Jon and I to continue to be motivated to work on all the necessary exercises needed for Asa’s development, e.g. speech sound cards, physio exercises, facial exercises, sitting up, rolling, and Makaton signing.

THANK YOU! :-)