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.

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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.

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

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Asa’s Hearing Loss Diagnosis

Ok… One of my biggest fears since Asa was born was the very real possibility of a hearing impairment. Today Asa has been diagnosed with moderate conductive hearing loss in both ears… This is due to ‘glue ear’ – a build up of fluid in his inner ear. The audiologist, Jacqui, described it as a ‘temporary conductive hearing loss’…but she couldn’t rule out a mild permanent ‘sensori-neural’ loss in one ear – the result was borderline.

Asa’s last hearing test on 28th August was emotional. Amy came with me and I am thankful for her support and positivity – she doesn’t let me get away with much moping around! Back then, I was told he had a hearing loss in one ear – I forget which one. Today’s hearing test was to check his other ear and if this ear was fine, no intervention would be necessary… The ABR (automatic brain response) hearing test today shows that he has a hearing loss in both his ears, as stated above.

The audiologist, Jacqui, said that Asa is currently unable to clearly hear all of the necessary sounds needed for speech, particularly the higher pitched, softer sounds such as ‘s’, ‘f’, ‘sh’, ‘th’. This means that early intervention is necessary to help his speech development. The options we’ll be looking at are either a softband bone conductor hearing aid, or the more common hearing aids (if his ear canals are big enough). Thankfully decisions aren’t needed today – I’m told we’ll meet with Dr Roberts sometime to discuss these options in details.

I’m writing all of this from a purely factual point of view, because if I stop long enough to think about it, to really think about it, my heart feels like it’s quite possibly breaking in to a thousand pieces and those constant flowing tears will be back to soak the laptop on which I am typing. I know people will be thinking that ‘it’s not the end of world’ – and they would be quite right. However, since Asa was born, it has been one of the things I have been most worried about. We knew he faced around a 40% chance of hearing and/or vision problems – that’s another one of the statistics given to children with DS.

When he failed the newborn hearing test before he came from hospital, he failed in one ear. That was upsetting enough, but there was hope. Hope that his other ear would compensate and that all would be well. Out of all those who fail this test in one or both ears, 9 out of 10 will have no hearing loss. 1 in 10 will have a hearing loss to some degree. This is the category we fall in to. The 1 in 10.

When I am feeling particularly anxious, nervous or scared, I get what I call ‘sicky stomach syndrome’, where these negative, anxious thoughts dwell on my mind, causing very real symptoms – feeling sick, ‘butterflies’ in my stomach, a flare up of eczema and sometimes headaches. Today, I cannot shift the ‘sicky stomach syndrome’. I had it while I drove in to the hospital, alone. I had it while searching for a parking space. I had it while walking in to hospital. It was still there when Asa was undergoing the test. It was there while waiting for the computer to plot all the results on a graph. It was there while I silently cried and prayed to God. I had it while the lovely Jacqui was telling me the results. It was there while Asa had the tympanometry test to see if the hearing loss was conductive (temporary) or sensori-neural (permanent). It was there as Jacqui wrote out the summary and informed me of the next steps. It was still there as I drove home, willing things to be different. It’s there even now, hours later, when the children are in bed and it’s just me and the laptop. The ‘sicky stomach syndrome’ does usually fade. I know it will return. I know people will think I am being dramatic, but most people probably won’t have been in our shoes. I’m vulnerable and hurting and sharing my honest thoughts.

Matt Redman’s CD was playing in the car on the way home, and the song ‘Never Once’ really resonated with me. Yet again, the tears came. I’ve included the lyrics at the end of this post, for you to read if you’d like… Powerful yet simple.

I started off very factual and numb writing today’s blog entry. Now, the tears don’t seem able to stop. It’s a reminder that God, for reasons only He knows, doesn’t always answer prayers in the way we want. I’m still trusting Him for the future. What else can I do?

Proverbs 3 v 5: “Trust in the LORD with all your heart and lean not on your own understanding”

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Never Once
(Matt Redman, 2011)

Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful

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!

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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!

A Family Day Out…To The Zoo

Yesterday we went on our first epic family adventure to Bristol Zoo. My mum, Cerys (Emelia’s cousin), and Emma (my brother’s girlfriend) joined us on the adventure. The sun was shining, the children were great and the animals were out to enjoy being the stars of the day.

 

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Our increasingly alert little boy, taking in the sights of the zoo.

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The dinosaur exhibition was pretty realistic!

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P1090203 Cerys with Uncle Jon

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Emelia wants to be in with penguins!

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We know how you feel little man! ~Yawn ~

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What a great first family day trip. Today I’m grateful for family, creation and the freedom to enjoy such things. Emelia and Asa, we hope you enjoyed your first ever trip to the zoo!