A Little Stroll To The Concourse…

This afternoon we were allowed to take Asa for a very brief walk to the concourse area! A very special neonatal unit nurse, Minny, arranged this for us after we noticed a pushchair in the storage area in the nursery and asked her about it. Today was the day! It felt very strange bundling up our little man in his personalised blanket and using the hospital pushchair, but we felt so proud pushing him down the long corridor. He still has his NG tube in so we had to be careful. We were under strict orders to bring him back after 15 minutes.

Asa wrapped up, ready for his first ever glimpse of the world outside the neonatal unit!

Waiting in the concourse was his sister Emelia, Nanny Guy, Nanny Shaw and Grandad Shaw. How pleased they all were to see him!


What If Blessings Come Through Raindrops?

I’ve heard a song a few times lately on UCB Radio, called ‘Blessings’ by Laura Story. I love it! I looked it up on YouTube, and well, it’s more than just a nice song. The tune is lovely but the lyrics speak volumes. I have never heard anything like it! Each time I listen to it or watch it online, it is challenging – and changing – my perceptions of what a blessing from God means. I pray for some of these things in the song – blessings, peace, family, health, protection, strength and so on. Yet sometimes these prayers for ‘good’ things seemingly go unanswered (which I know isn’t true – God does answer, it’s just that we don’t always like the answer!).

We may ask ourselves, “How can God let this happen?” or “I’m not asking for much, why can’t God give me this one thing?”. Whilst I’ve never really asked God, “Why us?” in relation to Asa having Down’s syndrome, I do often wish he didn’t have it, for his sake and ours. I also wish my little boy wasn’t still in hospital. I pray for God to bring my son home; I miss him – Jon does too obviously – and we want him home. Yet there Asa still lies – away from us, surrounded by beeping machines, the sharp smell of disinfectant, and nurses caring for him in the blue and green uniforms. “That should be me caring for him,” I inwardly, silently cry. Sometimes not so silently if I am honest.

We look on these disappointments in life as ‘bad’ things. Painful. Confusing. Saddening. 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 know why Asa is still in hospital or indeed why he had to go into the Neonatal Unit to start with; nor do I know why Asa has Down’s Syndrome, or why anyone is born with a disability. I don’t have all the answers. (I know it’s because we live in a sinful, imperfect world – that’s the short answer!). I know that God has a purpose for him, 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… We are just clinging to God right now and trusting Him. It’s all we can do.

To watch the video, click this link – lyrics are below:

(Laura Story)

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy?

What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise.


Blessings – watch the story behind the song:

The Perfect Tool

“A walk through the scriptures shows several times when the perfect tool needed in the hand of Almighty God was a child.”
Wess Stafford

This was tweeted yesterday by Compassion, an international child sponsorship charity. I read it at first without thinking too much about it. Then I read it again. And again. Then once more. This will be true of Asa, I realised.

Some examples of children / young people in the Bible who God used in a mighty way:
David was a mere boy when he killed the huge giant warrior Goliath. Josiah became king at the tender age of eight years old, doing what was right in God’s eyes. Jeremiah said to God that he was ‘just a boy’ and God replied, “You must go everywhere I send you, and you must say everything I tell you to say. Don’t be afraid of anyone, because I am with you to protect you,” says the Lord. (Jer. 1 v 7-8). When Jesus went missing as a young lad of twelve, Mary and Joseph found him in the temple teaching adults.

Soon our little boy will be home from the Neonatal Unit at UHW, God willing. Then the fun begins!!! The breast milk expressing will cease. The sleepless nights. The never ending bottle feeds will start. The encouraging of our little sleepyhead to finish his bottles. The first time we take him to church to show him off to friends and family. Our first family walk as a family: with mummy, daddy, Emelia and Asa. The teaching of the Bible and about Jesus. The family prayer times. This list goes on!

On the many ‘bad days’ I have had lately it can be difficult to look in to the future without getting upset. But even on those bad days, we know that God is good. We have a hope – an assurance actually – that God has a purpose for Asa. How do we know that?

Jeremiah 29 v 11: For I know the plans I have for you,’ declares the Lord, ‘plans to prosper* you and not to harm you, plans to give you hope and a future”

Asa is, and will be, a blessing, both to us and to others. He will teach us many things and we’ll all learn about each other as we grow. He will teach acceptance, patience, joy among trials and the importance of celebrating difference. He will teach others too in ways we cannot yet imagine. Our dear friend, Vicky Pici (some know her as Bibby!), recently said, “Asa might be the greatest preacher in your family”. Wow, what a thought!!! What an encouragement this precious friend is at this time.

A letter to our son:

Asa Jonathan Shaw, our beautiful, darling little boy. You have a purpose to fulfil! You have been created for a reason. You will teach many people many things. You will bless and encourage. You will be a joy yet stubborn… Like your daddy, and his daddy, and his daddy too (I’ll get daddy to tell you the story when you’re older!). Ultimately, we know that you will be a perfect tool in the hand of God, for His glory. One day. Soon. Goodnight sweetheart. We love you son, xx


*(NB. ‘prosper’ here doesn’t mean financial gain or reward)

Great Is God’s Faithfulness

After his pea-green sick incident earlier this week, Asa had an x-ray which didn’t show an obvious cause for the bileous sick, so we still don’t know what caused it. Doctors initially thought a problem in the bowel, or an obstruction. But he is putting on weight and when he was last weighed he was 6lb 13oz! Progress is being made, albeit slow… Patience has never been my strong point.

Asa is now back in the nursery, having been moved to the HDU (high dependancy) after that awful bright green sick. A step in the right direction! He was started back on feeds more slowly this time & is still on 2 hourly feeds, mostly through his NG tube,He has been started back on feeds more slowly this time and is still on 2 hourly feeds, mostly through his NG tube, but he has taken small amounts from the bottle – to date he hasn’t been too keen. He is still very sleepy. Last night the nurse said she was going to check with the doctor & see if they’ll allow him to try 3 hourly feeds. This is good because he should be more hungry at feed times and may therefore take to the bottle better, but its also a bit of a worry as he may not tolerate the larger amount of milk in his tummy… I’m a bit scared the green sick will make a reappearance! Asa is having the last of his antibiotics today, as far as I know, so all that’s really left to sort now is his feeding, but as he struggles with the bottle at the moment, he won’t be allowed out of neonatal unit until he’s feeding well & the doctors are happy.

Thanks to every single one of our friends who have commented on facebook, tweeted, texted, rang, babysat Emelia, encouraged us, sent cards and most of all thank you for EVERY prayer that has been lifted up for our precious son. When we’re too sad to know what to pray, we know dear friends are standing with us, praying with us and for us – we’re so grateful.

The following verses from Lamentations have been on my mind a lot this morning… My dear friend, Ellie – who has faced her own heartache and worry over her beautiful twin boys – also texted me a portion of these verses my second day in hospital when I most needed them… I know God is good. Always. Without exception. Without blame. He is faithful, even when we are not.

Lamentations 3 v 19 – 26 (NIV):
I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.”
The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.


This reminds me of the hymn based on these verses…

Great Is Thy Faithfulness
(Thomas Obediah Chisholm, 1923)

“Great is Thy faithfulness,” O God my Father,
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.

“Great is Thy faithfulness!” “Great is Thy faithfulness!”
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!

Summer and winter, and springtime and harvest,
Sun, moon and stars in their courses above,
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!