submission

We have been so blessed to have prayers lifted up for us and words of encouragement said to us. I am immensely grateful for them.

As I am immensely grateful for the people who have given voice to them.

In the past few weeks, I have been told that God will take care of us. I have been told that God will deliver us. I have been told that God will bless us.

The thing is I do not doubt any of these.

I have faith that God will take care of us, that He will deliver us, that He will bless us.

That is who God is.

And yet.

There is a line in a Casting Crowns song that we discovered recently (and that we love) that talks about the difference between "the God we want" and "the God who is".

The reality is that God could take care of us, could deliver us, could bless us by letting us have a child who has Downs or Edwards.

If that is God's plan for us, then ultimately that care, that deliverance, that blessing will come. I know this in my head, even though I cannot see it now.

And because I cannot see it now, it is simply not what I want. It is not what I would choose. It is not how I want God to be. This is my biggest struggle right now. To reconcile the outcome that I want, with the outcome that God chooses to give. The nub of it all is submission.

I am struggling to submit my heart's wants, desires, dreams to what God has planned for me, for us. I am struggling to trade my dreams for His. To not be caught in the middle.

fighting back

The attack came a few hours just after I put up the last post on the blog.

It is hard to explain it now what happened. It simply felt like I was overtaken by despair, so soon after I had felt hope again.

Sometimes the enemy whispers lies in our ears that are so loud, so persistent, that the truth is drowned out, and it becomes hard to hear anything else. I struggled to cling to what I know to be true. In that moment though, I felt like I was fighting a losing battle, and my heart was deep in despair.

That night, I fell asleep in tears, whispering to God, "I am not strong enough for this. Please let this cup be taken from me."

The next day I woke up still heavily weighed down. But a new morning brought new mercies. My mercy that morning was a simple one: a realization that I could not fight this alone. My arms were wearied from being held up. So I asked a couple of close friends to pray for me. I knew K was praying already.

It helped.

Hard to explain how. But the battle we fight is a spiritual one, one we cannot see with our human eyes. And I draw comfort from knowing that God knows my struggle, and He hears my plea for help.

For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.
Ephesians 6:12

hope

In the first few days after we got our risk assessment, I could not sing. I tried, but my heart was too full - so full of worry, so full of fear, that the words could not come out of my mouth. Almost every song I heard brought tears to my eyes, as I mourned for my fourth child, the child I was told would almost certainly have a chromosomal disorder, and possibly one that would take his life.

I heard such strong words from my doctor, and my heart lost hope.

I do not know why things should be any different now, almost two weeks on. But they are.

I can sing again.

I can sing songs of worship to my God. I can sing songs that speak of loss. I can sing songs that remind me to trust in God. And I can sing songs that look forward to us being reunited with those we have lost.

In the days that have passed, I have regrouped. Little things have come back to my mind, things that were obscured by my initial emotions. Things that have given me reason to hope again.

We have heard from many friends, here and across the world. I have been humbled by the love they have shown to us, as they lift up prayers for our family, for our youngest baby. Through their words of encouragement and love, they have helped to hold up my arms, when I was too weak to do it on my own. They have helped me to hope again.

Then, a friend helped me to remember that as I was having the ultrasound, I had noticed the technician wearing a cross around her neck. I didn't give it much thought then, but now, I think God was showing me that He was there. He was with us, even before we knew how much we needed Him to be there.

K also reminded me of a video we watched a few weeks ago. It's part of the NOOMA series, by Rob Bell. The particular episode we watched is called Rain, and in it, Rob Bell talks about how he was hiking with his baby son in a backpack in the woods when it started to rain. It rained hard, and the baby was scared. Throughout the storm, as his young son cried and screamed in fear, Rob held him close, whispering in his son's ear over and over again, "It's ok, it's going to be alright. I know the way home."

Sometimes the rain pelts down so hard and the thunder cracks so loudly and we are so seized up in fear, that we don't even realise that God is carrying us, that He is holding us close, that He is whispering in our ear, "It's ok, it's going to be alright. I know the way home."

He knows the way home.

And so I can sing again.

he's five

Because I want to remember all that I have to be thankful for...

Joshua is five today. He's been counting down for days, and has told almost everyone he's met.
We are so proud of him, for being such a big boy and for being such a good kor-kor.

He was conducting as we sang the birthday song for him.

swinging

It has been almost a week since we got our risk assessment. It has felt like much longer.

It has been an exhausting time, but I think I am finally starting to feel some peace again. I swing from one end to the other several times each day, but at least there is peace at one end. I cannot explain it, the peace, except to say that it must be the result of many prayers lifted up on our behalf. Then at the other end is fear and worry, which grip my heart when I try to comprehend the enormity of having a child with special needs, or of having a child who will not live long, if at all.

My mind knows this: my God is good, my God is faithful, my God is loving, my God wants to bless. This past weekend my heart did not know these things. But inexplicably, I think my heart is finally starting to catch up with my head. It is not a smooth linear process. I take a few steps forward, only to fall behind again, but I am thankful that there is any movement at all.

I was convinced yesterday evening, just felt so sure in my heart, that this baby would have Trisomy 18. Then this morning, I felt sure that God would work a miracle, and that the baby would be born healthy. I cannot hear clearly, because my heart is beating so loudly. I am too afraid to ask for a miracle, because I don't know if I am strong enough for that prayer to go unanswered. But then I wonder if I just have too little faith.

So I swing back and forth. I want to get off the swing, to put my feet on the ground, to feel steady again. I want to grasp the hand of Jesus. But I am still swinging, even though the arc feels like it is getting smaller and I am getting closer to the ground. The tears shed with us, the words of encouragement we have received, the words of Scripture said to us, the prayers prayed over us: these are the weights that slow the swing down.

I am more grateful for them than I can say.

broken

We are living in the dark. It is all very, very surreal. And I keep waiting to wake up.

Combined with my blood test results, our risk assessment shows that our youngest child is at very, very high risk for a chromosomal disorder. My doctor told us that these are the highest numbers that she has seen yet: our baby almost certainly has either Downs or Edward's Syndrome. 95% of babies with Edwards (it is also known as Trisomy 18) will die in utero. On average, babies who are born alive will live for 5 to 15 days.

I have cried many tears and I have many angry conversations with God. There is so much that I do not understand. We were not even looking to get pregnant, and then to get this diagnosis... And I do not even know what to pray for. Do I audaciously pray for a miracle, for the baby, against all the odds, to be born healthy? Do I ask that the baby has just Downs, only it is not "just" Downs, it is a lifetime of struggling with health and developmental issues? Do I ask that the baby has Trisomy 18, so that baby will go home to Jesus, even if that means we bear the loss?

We are walking through such dark, dark days.

We have an amniocentesis scheduled for next month. We will probably go for it, mainly because if it is Trisomy 18, we will want to move to KK hospital: their neonatal intensive care unit is probably best equipped to deal with what we have to deal with.

Now K and I are living our days in suspension. We cannot stop to mourn fully because we have three other kids who need us. Yet we are so heavily burdened with grief for our fourth child, that nothing, no moment in our day, feels normal at all.

We are going through the motions because we know we have to. Yesterday we went to church, and shared our grief. I hadn't even wanted to be there, because everything felt so fresh, so sharp. Afterwards though, I knew it was the right thing for us. The ladies who put their arms around me, who said no words but who cried along with me - they brought me the most comfort in the past three days. The burden and the pain and the grief are all still there, but I felt comforted that they bore my sorrow for me too.

I have felt so far from God throughout all this. It has been so dark, that I have found it hard to see His light, even though I know in my head that it must be there. It was only late yesterday night as I lay in bed waiting for sleep to come, that I realised something. Those ladies who put their arms around me, who cried tears of sorrow with me, those ladies were the arms of Jesus. It doesn't make everything right, but that time in church brought the realisation that Jesus, through the body is Christ, bears my sorrow with me.

Maybe there is just a little bit of light in this darkness.

Sunday

this looks familiar

The kids are finally in bed, and I am at the end of what has turned to be a long, eventful day.

We had our Down's screening this morning. The doctor has to figure in a few factors before she can give us our risk assessment. One of the factors is measuring the space between the folds at the back of baby's neck through an ultrasound. We didn't do so well here. The ultrasound technician said it was thicker than normal. When I spoke to my doctor, she did the measurement again for me, and said that it was just on the borderline.

I really don't want to be here again.

We have to wait for my blood test results before we know more. That should come back in a few days. For now, we wait.

We have spent much of the day in prayer. For a healthy child. For the overall risk assessment to come back as low.

Otherwise the baby seems to be growing well. We got to watch the baby move on the computer screen for quite a while today. The ultrasound technician took longer than expected because baby was on its tummy, and didn't want to turn. There was jiggling involved, and physical turning on my part, to get baby in the right position. But we got to see the spine, the beating heart, the legs, arms, and fingers. It was awesome. Baby looks so cute already. So small, and already so much in my heart.

Rationally I know that the screening is just that, a screening - it cannot definitely tell us if we have a Down's Syndrome baby. And even with a high risk assessment, we're pretty sure that we will not go for more invasive testing. We will pray for a healthy child, and believe God for a healthy child, but we will also ask for the grace, strength and wisdom to parent a special-needs child, if that is what God has given to us. It is not the road I would have chosen, but whatever the result, I remind myself that God is in control.

K worked on this Sunday's worship last night, and chose this song to teach to our church this week. These lines resonated with us today, and we heard God:

I have a Maker
He formed my heart
Before even time began
My life was in his hands

I have a Father
He calls me His own
He'll never leave me
No matter where I go

He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
- Tommy Walker, He Knows My Name

We thank God that He knows us, that He formed us, that He hears us.

knitting

For you created my inmost being;

you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
Psalm 139:13-14

We are scheduled for another check up on baby in a couple of days. I have a special test scheduled this time round; it's a new one - I don't think they had it yet during my earlier two pregnancies. Basically we'll be able to do an earlier and more accurate screening for Down's. I wouldn't think anything about it, except we've travelled down this road before, and it turned out to be curvier than expected.

We didn't clear the Down's screening during my pregnancy with E. It was just a screening, so it doesn't definitively tell you whether or not your baby has Down's, but the risk assessed with her was higher than normal. Enough for my doctor to recommend an amniocentesis. We were travelling in Thailand when I got the call from the doctor's office. It sent us straight to our knees.

In the end, we decided not to go with the amniocentesis. We prayed that the baby would be healthy. We also prayed for strength and grace to deal with a not completely healthy baby, if she was indeed sick. I worried. And then worried some more. We had always thought of Emma as a possible name for our baby girl. What clinched it for us was finding out that one of the meanings for Emma was "whole, complete". We claimed that for her. And praise God, she was born healthy. (Three years down the road, I can also say spunky, with a strong backbone!)


We've been praying for a healthy baby this time round too. Every night before the older two sleep, we say prayers with them, and they've taken to praying for the baby. I love hearing their little voices say, "Please God, pray for new baby."

As I go in for the test on Thursday, I am just a little nervous. But I'll be holding on to the hand of Jesus.

a leap, and someone to hold my hand

Today I took a leap in church. And took one big step out of my comfort zone.

And who am I, that God was mindful of me? Once again, I am amazed by how He knew my anxieties, my discomfort. And so He sent a wise woman, someone I respect greatly, barely ten minutes after I took that leap, to confirm that it was the right step, to give me welcome advice, and to gently prod me along. It was a conversation that God truly directed; both of us started out not even knowing how He would guide our words. But guide He did, and I know I was blessed for it.

Who am I, that God was mindful of me?

Sunday

not so baby steps

In more recent news, Noah now...

1. has decided that baby food is no longer for him. He completely rejects porridge if I cook it for him, and will only eat when I feed him what the older two kids eat. He now holds the record for weaning himself off baby food the earliest.

2. is sleeping through the night. (*crossing fingers as I type this*) I am looking forward to enjoying a few months of sleeping properly, before the new baby arrives and turns my world upside down again.

3. has a bit of a weird nap schedule. If he takes a good solid morning nap, then his afternoon is short, and hence to my mind, pathetic. But he cannot yet go without a morning nap. He passes out by about midday at the latest.

4. is walking! Keeping to our tradition of having fairly early walkers, he took his first step last month (both J and E took their first step around 10 months as well), and now can go about six or seven steps unaided. We got him new shoes today. If he's in a hurry, he'll still crawl though. No time to waste, especially when he sees someone holding a bowl of food.

5. is clapping. His newest trick. So cute to see the look of delight on his face the first time he did it.

6. is a climber. His favourite way of scaring me is to clamber up onto the sofa and then laugh cheekily when I lunge to catch him.

Yes, he's been busy.

Sunday