Looking Back, Looking Up.

I am behind with this blog. I am still catching up from a while ago – I scribble down notes, or make a quick rough draft in Microsoft Word, and finalise it when I can. Part of the problem is that Jon and I can’t decide on a name for the blog! Get your act together Lizz!

[Author’s note: We finally decided on Down With Asa, one of the first we ever thought of! Funny yet frustrating]

Tonight I have been working on the timeline of Asa’s life so far, from the pregnancy through to now. Simultaneously, I have also been working on the pieces of the puzzle that made up the prenatal potential diagnosis of Down Syndrome, through to receiving the confirmation a few days after Asa was born.

As a result, it has been an emotional night reflecting on Asa’s journey through the pregnancy and those early weeks in the Neonatal Unit at UHW. It always happens when I’m working on the blog. Going back over those memories that would prefer to stay hidden in the deep, dark place of my brain.

Tonight I’ve been reliving the moment we found out there was a possible problem and the awful statistics given to us that are forever burned into my heart. 50% chance of a chromosome abnormality, 10% chance of a heart defect (but no chromosome abnormality), 15% chance the baby would not survive (e.g. miscarriage or being stillborn), 25% chance of no complications and a typical, healthy baby. When we were first given these statistics, I saw them every time I closed my eyes, in bright yellow lights. It was awful. Now I am thankful that these memories are fading, and that God comforts us.

“He [God] tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.”

~ Isaiah 40 v 11

So while those horrible memories and statistics are at the forefront of my mind again as I work steadily on Asa’s story, we can move forward in the knowledge that both our children are perfect, healthy, and so very precious… Also in the knowledge that we have an awesome God who never, ever leaves us, and who is gently guiding us.

Not My Words

Every so often, while reading articles online or in books, I come across something that I wish I’d had the wisdom, or insight, to write myself! Some things that I read help me to understand a bit more about God’s plans and purposes for each of us. Some things explain how I am feeling to others more clearly than I ever could (I hope that makes sense!).

This is one such piece of writing I wish I could take credit for, but alas, I cannot, for it was written by a theologian with a far greater grasp than me on unanswered prayer. I came across this while preparing for leading a youth Bible study. I was looking at grace and had read 2 Corinthians 12, in particular verses 9-10:

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

Commenting on this passage, F. Whitfield says this:

“God’s way of answering His people’s prayers is not by removing the pressure, but by increasing their strength to bear it. The pressure is often the fence between the narrow way of life and the broad road to ruin; and if our Heavenly Father were to remove it, it might be at the sacrifice of Heaven. Oh, if God had removed that thorny fence in answer, often to earnest prayers, how many of us would now be castaways! How the song of many a saint now in glory would be hushed! How many a harp would be unstrung! How many a place in the mansions of the redeemed would be unfilled! If God answered all the prayers we put up to Heaven, we should need no other scourge. Blessed it is that we have One who is too loving to grant what we too often so rashly ask.”

***

There’s not a lot more I would add to this right now… I am beginning to emerge from a haze of fear, uncertainty and feeling ‘lost’ regarding little Asa’s Down’s syndrome. I am feeling a lot more positive. In those early days I begged hard for God to remove the extra chromosome from each of Asa’s cells in his tiny, perfect body. God said no. He has not removed this pressure, this disability, from our boy, but He has given us strength to bear up, increased faith in Him and an incredible supportive family, friends and church. I’m starting to think that all will be well, and actually starting to believe it now. You know sometimes, if you tell yourself something enough times, or hear God say it enough times, only then you start to believe it… I’m at that point! PRAISE GOD! 🙂

Shattered Dreams?

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Unable to hold our son that night... :-(

Three months on, and I still see these images in my mind… How bittersweet those first few days were.

***

I love the devotionals and blogs written by ‘Girlfriends in God’. These three women write so beautifully for Christian women about faith, life and love, and everything in between. It’s for parents, for busy professionals, for young women and older – for women everywhere.

I don’t read these devotionals every day. Today I read the post from 3rd October. I found this post so moving, so inspiring, so helpful. It’s about shattered dreams that we may face. This may take various forms, such as a divorce, the heartache of infertility, the death of a child, or losing one’s job, and so on.

Here is a snippet from the devotional:

“Every day I receive emails from women who have had their dreams shattered. A husband has an affair, becomes addicted to pornography, abuses the children, or deserts the family. A child gets caught with drugs, becomes pregnant, or dies in a car accident. Parents divorce, friends betray, careers come to an abrupt halt. The list is endless. So what do we do when our dreams are seemingly destroyed? The answer to that will shape the rest of our lives.

 

Does that mean we give up our dreams? I can promise you this, whatever dreams you have for your life, God’s dreams are greater. The power of the Holy Spirit the disciples received after Jesus’ resurrection, and the impact they made on the world thereafter, was beyond their wildest dreams. That’s what God does with a heart that is wholly yielded to Him. That’s what He does when we give our shattered dreams to Him. I have learned to stop saying, “Why me?” but instead start saying “What now?” ”

***

When Asa was first born, it was incredible – now we had a baby boy and a little girl! This is the dream right? The dreams we had… Daddy would play football with his boy, teaching him to kick the ball, to ride a bike, to love God. Mummy would choose some adorable little outfits, pray with and for him, wash football kits. Emelia would tease her baby brother, try to dress him in girly clothes, force him to wear makeup or play hairdressers… Perhaps!

Later that night, in the Neonatal Unit, the nurse told us that our perfect little boy had some features of Down’s Syndrome and that the doctor would meet with us tomorrow to discuss it.

*BOOM* – shattered dreams. Would Asa ever get to play football with his dad? Would he be sporty at all? Would he…? Would he…? Would he…? The questions in my mind kept coming. That was possibly one of the worst nights of my life (other than the second night in hospital). My baby was not with me, and was poorly, fighting for oxygen and fighting an infection upstairs in the NNU. My husband was not with me – he was home without his wife and new child. My daughter was not with me – to make me chuckle or distract me from my pain. My God – yes He was with me. Thankfully He is always with me. The Bible tells us He never leaves us or forsakes us (Hebrews 13 v 5), and I know that to be true firsthand.

 P1080936Daddy and his boy, aged 2 days old.

The next day, Saturday 7th July, we met with the doctor who confirmed his suspicions of Asa’s DS. We signed the consent forms for the necessary chromosome testing in a haze, a fog of fear, of worry and of pretending to be fine. I can honestly say that Jon and I thought our dreams were shattered. That second night I sobbed and sobbed, praying God to take the DS away, feeling utterly terrified and alone. What made it worse was that night Asa had two seizures and the doctor couldn’t tell me why.

While pregnant, even though we knew our baby faced a 50% chance of having DS, we didn’t really think it would happen to us. How arrogant we were. How ignorant and foolish. I wish with all my heart we had done our research… We would have seen that our dreams needn’t have felt like they were shattered. I wish then what I know now. That DS isn’t the end of the world. But I can’t go back in time and change that initial reaction. Those ‘bad’ days are lost forever, and I feel guilt for not fully being there for my son. I adore Asa, we both do. He is his own person. DS doesn’t define him. Our dreams for him are similar to Emelia’s – for us to raise him well, for him to be happy, to love God, to go to school and learn, to fall in love and to be loved. Are any of these dreams sounds familiar for your children?

***

Sometimes life throws us a curve ball – something that we don’t expect, or imagine, or want, or know how to deal with… Stresses come. Illnesses happen. Death steals. Sin destroys. Yet there is one thing we can do – we can stop saying “why me?” and ask God “what now?” Trust in Him, lean fully on Him with all your heart and go with it.
(It’s ok, I’m telling myself this too, not preaching to you!)

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The Knowledge, Presence and Creation of God

Psalm 139 is one of my favourite Psalms. The author, David, writes about the awesome knowledge of God. Not just a worldwide knowledge of everything, but an intimate knowledge of us, His people. It’s an intimate knowledge of us because He is the very One who created us, all of us. We would not be here were it not for the author of life creating us and breathing life in to our being.

David also talks about the awesome presence of God. There is nowhere we can go that God can’t find us, or reach us. Even if we hide under the bed covers in the dark, God knows exactly where we are. I find this fact comforting. That there is always someone who knows where I am; that I’m never lost even when I may feel lost; that my Creator God cares enough to concern Himself with where I am. For a person who doesn’t know and love God, that could be a rather scary thought… That God knows everything about you and where you are at all times!

David also talks about the awesome creation of God. Human beings were the last of creation to be made (see Genesis!). It’s as though we’re the masterpiece of creation, the grand finale perhaps! No single person is ever created by accident. Children who are ‘unplanned’ or ‘surprises’ are planned and created by God. Children who are abandoned at birth or in childhood are wanted and created by God. Those who have a bad experience of an earthy mum or dad were wanted and created by God. Children with disabilities are wanted and created by God too. As I’ve stated many times before in these posts, no one is EVER a ‘mistake’ – how I hate that word in this context. Our two beautiful children, one is developing in a typical manner, the other has Down’s syndrome and will develop perhaps a little slower than his peers, are both created, planned and wanted by us, but ultimately by God. Isn’t that a comfort? It’s almost like they’re on loan from God for us to look after… Children are a blessing.

Sometimes when I’m feeling down, this is one of the Psalms I might read to put things in perspective! The reason I am sharing it today is that I saw a beautiful photo on Facebook… It makes me tear up every time I see it and think about what it actually means. All life is precious. ALL LIFE.
Bump_Psalm139

Psalm 139 (NIV)

1 You have searched me, Lord,
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.

7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

17 How precious to me are your thoughts,[a] God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

If only you, God, would slay the wicked!
Away from me, you who are bloodthirsty!
20 They speak of you with evil intent;
your adversaries misuse your name.
21 Do I not hate those who hate you, Lord,
and abhor those who are in rebellion against you?
22 I have nothing but hatred for them;
I count them my enemies.
23 Search me, God, and know my heart;
test me and know my anxious thoughts.
24 See if there is any offensive way in me,
and lead me in the way everlasting.