Zipper Club: How?

I’ve been pestering Joel to write Georgie a poem. Here it is. We share it in hopes that it might help other parents who have been through traumatic births.

How can a person come to love someone they’ve never met?
A child, still not fully formed, who’s seen by no eyes yet,
A beating heart, two tiny hands, and let us not forget,
A destiny, planned out by God, a time divinely set.

How can parents form a bond that draws them in so tight,with a tickle in the ribs, a kicker in the night,
A wriggling mass beneath the skin, still hidden from their sight,
A life of full potential who has yet to see the light.

How can a mother love so deep a child minutes old?
A babe for whom her soul cries out, her arms long to enfold,
though tragic circumstance conspires to mean she cannot hold
this girl, the close of painful toil through endless hours untold.

How can a father love so much a daughter of nine days?
so that when taken from his hands, his heart is torn nine ways,
and kissing her goodnight, his eyes are blind through teary haze.
But then, restored!-though scarred-his being cries to God in praise.

How can a toddler move so constantly though aged a year?
Is this our child, so alive, to whom death drew so near?
How can we forget the awful fallen pall of fear?
Oh Father God, come quickly; wipe away each faithless tear.

How can I bear the glorious truth that God is always good,
when I’m singing from our mountain home, or drowning in the flood?
That if our girl had died that day, as she so nearly could,
I still would stand and raise my hand; “My God did as He should”.

Coda;

Georgina, bear much fruit for God as strong for Him you grow.
Moli, praise the One who saves, and make sure Him you know.
Anne, be filled with grace, and may God’s Spirit through you flow
Harding, strong and sturdy, stand. He’ll never let you go.

 

Zipper Club: The Battle After the War

There was a profound sense of relief when Georgie got through her op, a new urgency and battle of getting her home as soon as possible, all aided by a huge army of family, friends, prayer warriors, nurses, and doctors. Even driving home with her was mostly relief (mixed with utter fear, panic, and total fanatical watching to check she was breathing (we were first time parents, ok?!)).

What we didn’t understand, and I don’t remember anyone speaking to us about it (we had all been focused on whether Georgie would make it to and through the operation), was the battle that starts after the war is supposedly won.

We had no way of knowing that the damage we’d sustained in the battles leading up to Georgie’s birth and immediately after would not just tidy themselves up after we got off the battlefield. Our minds didn’t bounce back like that. And not only that but we didn’t get to come home and rest up from that battle. There was no recuperation period before we were thrown headlong into a second battle. This was a battle we were unaware of until we were up to our necks in mud, fighting for our minds, and all the while cluelessly looking around to wonder who our foe was.

When the adrenaline rush of the initial battles passes, you come face to face with what feels more like trench warfare. A bit of ground taken, at great cost, a slog in the mud, with no great ground seemingly won, just a high casualty list.

It’s the battle of aligning what happened with faith, of processing everything that has happened but without a physical enemy to fight (the operation). It’s the battle of PTSD where you wake up sweating because you just watched your daughter die under anaesthetic and it takes you minutes to realign to reality, plus reassuring yourself by hanging over her cot, one hand lightly on her chest, until you’ve calmed down enough to feel the movement of her breathing. It’s the battle of knowing you serve a Good God and also wanting to swear at Him for not fixing it the easy way. It’s the battle of guilt that Georgie is doing so well while simultaneously the battle of great envy when you see “healthy” children and know there are no scars on them or planned operations in their future. It’s a fight against anger that the world is a broken place and little girls have to have operations to save their lives.

Those battles were unexpected. I genuinely thought we’d come home and slowly adjust to being a family of three and that would be that. It hasn’t been like that. I have wept and screamed and fought near physical pain as I run my fingers over her scar (that she is blissfully unaware of). I have had moments of deep clarity and love from God and times where I *know* good will arise. I think those are the breathing moments where football gets played on no-man’s land.

I share this to ask you to be aware. Not of us, so much, but of others in your life who have experienced trauma. The battle isn’t over when they get home. Love won’t put a magic plaster on it that suddenly makes everything ok. Or perhaps I’m speaking to the one who has just fought a war and is left traumatised – I beg you, know you are not alone. It feels it. I know it does. You feel like you’re underwater and everyone else is having a party on the surface but you can’t hear properly. Understand you haven’t done battling yet and gather your weapons and soldiers. You can’t do the fight on your own, even as others come to you and ask how the victory felt. You look blank and wonder why people speak of victory when you’re in the trenches and then remember the previous battle and fake a smile because you feel it doesn’t glorify God to admit you’re not dancing on mountain tops. I give you permission to lose the fake smile. Some won’t get it, others will understand and pray and be there and fight alongside you. Don’t alienate fellow soldiers by acting like you’re ok when you’re not. If we never tell people that we’re not ok, we don’t give them the opportunity to pray for us and help us – and we may close down any chance of them one day reaching out themselves.

Let’s lose fake smiles. Even after a battle has been won. I do care about expectations people place on me but I’m trying to learn. I want honesty to rate higher in my life than smoothness and ease. (Unless it’s a bad day and then I want living as a hermit to rate highest but that’s not really the point.) If we are the Body of Christ, do you not think the rest of the body would appreciate the chance to help fight and stop the little finger getting cut off?

Please, church, can we not love each other so we can help those who are fighting battles we feel they ought to have finished fighting but haven’t? If someone is having a punch up, telling them they really should be celebrating their last victory is probably the least helpful thing you can do. They need someone to go in and grab that thug’s legs, not go up to them and say, “Oh, hallelujah at how you beat those two thugs last week. I was so amazed at how the Lord worked through you.” If they’re trying to stop someone from bashing their head in, they won’t be listening. Church is for celebrating together, absolutely, but it’s also for doing the dirty, hard work of fighting in trenches.

I want to add: we are both working through the trauma with an incredible Christian counsellor. If you are struggling to come to terms with trauma, there is absolutely no shame in going and getting help! We’ve both found it incredibly helpful to have someone who knows which weapons are most effective and help us learn to use them.

Zipper Club (flashback): Pain & Faith

Written before Georgie was born:

In our current Christian climate, there can sometimes be a bit of embarrassment to admit grief, pain and faith can co-exist. In fact, not only can but frequently have to.

We want a nice tidy world, a nice tidy God and nice tidy lives. Well, at least I do. I don’t want uncomfortable questions or questions that don’t have easy answers. I don’t want to have to say “I don’t understand”. But that’s not my choice.

It is possible to raise your arms in praise with deep, deep tears of pain rolling down your cheeks. It is possible to sing “Blessed be Your Name – You give and take away, my heart will choose to say, Lord blessed be Your name” and feel like your whole world is shaking and you’re not sure if you’re going to make it.

I delight in the stories of God’s miracles in people’s lives and yes, I hunger for one in our own. Perhaps we will get it, perhaps after all this our little one will be born with a healed heart. Oh, my mother’s heart wants that. But perhaps there is a miracle in raising hands in praise and surrender when everything within you humanly speaking would rail and clench fists?

I don’t want anyone to think this faith walk of ours is easy. It isn’t. I thought I was doing well until worship on Sunday when everything in me wanted to fall on my knees and scream in pain, deep guttural cries. I wanted to scream and pound the floor and tell God it wasn’t fair, what He was asking of my little one wasn’t right. The tears aren’t far at any one moment because this isn’t the story I wanted. I thought the CFS/ME had taught me to walk by faith and to trust when we can’t understand – that was just the introduction, I’m finding. Trusting God with your own life would appear to be a lot easier than trusting Him with someone else’s.

Please be patient with us as we learn to walk in a very different direction to the one we were expecting. If we sound trite when we say we trust God – it isn’t trite, honest. It’s a gift He’s given us. But just because we trust Him doesn’t mean it doesn’t hurt. Job didn’t stop trusting God but I wonder if a day of his life went by, even after so much was restored to him, when he didn’t think of his buried children.

If we want a real faith, we need a faith that can cope with a broken world where we don’t always get glittery, sparkly answers instantly. Jesus prayed for the cup to be taken from Him but “not My Will but Yours”. Our burden is nothing in comparison to His but not our will but His, whatever that may involve.

Zipper Club (flashback): God is Good

Written before Georgie was born:

I will never forget reading a story (not that I can find the link to it now) of someone approaching a father whose daughter had been through serious heart surgery. They knew that if she didn’t have the surgery, she would die and there was a good chance she wouldn’t survive the surgery. As it was, she did survive the surgery and made a great recovery. Anyway, after the surgery, a person approached her father and said, “Isn’t God good?” And it was the reply of the dad that stood out to me: “Even if she had died, God would still have been good.”

It’s easy to believe in a good God when all is right in our little world.

These last few months, though, He’s challenged us on that. Even if things aren’t going right, is He still good? Is He still keeping His word? Is He still on the Throne?

We’re expecting the birth of our first born in the next few months. It’s a time of excitement, and terror, pretty much like what every first time parent-to-be experiences, I suspect. But there’s been more. At the 12 week scan, they picked up a cystic hygroma and explained this could mean many things. It could just be a growth, a twisting of glands, and it would sort itself out or need minor surgery, or it could mean heart problems, or it could point to a genetic problem. Straight away you could see the question on the faces of the medical people: “Do you still want this baby?” There was never any question for us – little Smidgin is a gift from God to us. Medical problems haven’t changed that.

So the 20 week scan came and they started worrying about the heart.

By now, we’ve had several more scans and it’s clear our little one has a problem with their heart. We’re still waiting to see how much of a problem and whether it’s indicative of more problems.

Is God still good?

Is a God who is capable of healing, who is capable of stepping into humanity’s messed up world and putting things right – is a God who can do all that and yet, for some reason, has not – is He still good?

You reach a point in your Christian walk where you have to take something by faith, you have to choose to say “I believe in a Good God” even when circumstances don’t necessarily appear to tie in with that. I have had to make peace with the fact I don’t understand my Heavenly Father. I don’t understand why He does allow certain things, I really don’t. But the fact remains that I believe 100% that He is Good, that He is always fighting for us, that He has plans to prosper us and not harm us. Sometimes that faith is a little shakier than other times but He is helping me walk through it.

Our prayer for Smidgin, for us, as we step into an unknown future, is God’s will be done. If that involves miraculous healing, praise Him! If that means we spend months of our lives in hospitals, we will praise Him! His goodness is not reliant on how we perceive him – thank God!

A few weeks ago, we were sitting in the car driving to the first of the extra scans, a scan that would confirm whether it was poor visibility at the 20 week scan or a real problem with the heart. As a side thought, as we ran out the house to do the 2 hour journey, I grabbed a few Christian cds and one of them has become the soundtrack of this pregnancy: The Attributes of God by Shai Linne. The lines of the chorus of one particular song have stuck on repeat in my head:

“If you’ve tasted and seen – then you know what I mean, He’s Good

In His nature is love, everything that He does, He’s Good

Even when it gets tough, yes, the Lord is enough, He’s Good

Yes, God makes it plain through the Lamb that was slain, He’s Good.”

The Glory of God, Shai Linne, The Attributes of God

Faith doesn’t make sense to an unbelieving world. I’m not even sure it makes sense to a believing world, let alone to my head! But I can’t let go of my belief that God is good just because He has failed to fit into what I perceive as good right now. I don’t know how my story is going to meander through this life but I hope it ends in His arms and that’s the greatest thing I can pray for Smidgin. I can’t guarantee him/her an easy life – and as a mother, don’t you desperately want to? – but I can pray deeply that Smidgin’s story ends in the same Arms as mine does.

Sometimes God just says: “Trust Me” and it doesn’t make sense, it hurts and even other Christians cannot understand it but that is when we have the choice to step in a little deeper to the river of faith and learn even more about either our swimming skills or our Heavenly life jacket!

Apologies

I apologise for how long it’s taken to post – WordPress was deleting all my drafts as soon as I wrote them! It seems to have sorted itself now though so hopefully I’m back! 🙂

Zipper Club: Heartbeats

Heartbeats.

Everyone has them. Block your ears and concentrate and you will hear your own very clearly, the drumming of blood being pumped off on its journey around your body. Lean into someone’s left shoulder/chest and you’ll hear their heartbeat. It’s such a comforting sound, like breathing.

Until…

Until you’ve heard heartbeats on monitors and watched their squiggly lines on screens, you’ve seen them dip alarmingly, you’ve been in a room with other incubators and heard staff rush to resuscitate another child.

Heartbeats become scary.

I cannot hear Joel’s heartbeat any more without its rhythm feeling like an echo of a past I don’t want to revisit. I hate feeling Georgie’s heartbeat under my hands and how delicate it sounds, like a bird’s. If you’ve ever held a chick in your hands, do you remember that surge of panic when you felt its fragility and knew you could crush it in one movement? That’s what I feel whenever I feel Georgie’s heartbeat.

I hate heartbeats. I hate the reminder of mortality, how little control I have over anything, especially the state of my daughter’s heart, how easily a heart can stop and a person just be gone.

I wonder if that is a reason God lets us hear and feel heartbeats? Does He know we need a reminder that we are not invincible and we need a God who can take care of things like the heartbeats of little chicks? Whilst I hate being reminded of the fragility of life, particularly my daughter’s, should I not be using that to turn to the One Who holds hearts?

I recently was reminded of the story of Lazarus. He was dead in a tomb. No heartbeat. Nothing. And yet Christ, by just His voice, commanded that heart to start beating again. Instantly, blood being pumped, breath happening, muscles squeezing and working.

Fear tells me hearts are fragile.

My Lord tells me He created hearts and He is in control.

I don’t understand. Bad things happen – I don’t understand why.

But I also draw comfort from the story of Lazarus and how Jesus wept. The King of Kings saw humanity broken and destroyed and twisted by evil and He wept. He does not see the pain of our fragile hearts and remain a hard, cold, distant being. He weeps. He knows how He designed the human heart to always beat strong and never falter and we humans decided we knew better and rebelled against Him and suddenly our hearts were touched by pain and brokeness, wearing down until they one day stop. Oh, how I long for Heaven, a place where hearts don’t stop, where monitors aren’t needed to check children are still alive.

I’m not saying I’ve got past my fear of heartbeats. That is a long journey. But I am trying to remember that we have a God who is watching every tiny pumping action Georgie’s heart makes. One day, I will hopefully be able to hear a heartbeat again and be reminded of the comfort of life. The Heart Maker and Heart Healer is on Georgie’s case. I shouldn’t fear. I do but I shouldn’t.

Zipper Club: A Selfish Mother

I am a selfish mother. We had a positive check up for Georgie today – she’s doing really well – and I’m on the floor in the bathroom a blubbering mess.

I want this next operation to just happen so we can move on. I know that’s not what’s best for Georgie, I know it’s better for her that they delay as long as possible (potentially up to 5 years), but I want it to happen now. See what I mean about selfish? I don’t want an operation at all. I don’t want my daughter to have a heart problem. But if she has to have a heart condition and if she has to have an operation I want it to just happen so we can work on healing and getting on with normal life.

I don’t know. Is normal life a thing? Is it even possible with a heart baby? Is there always going to be a question mark hanging over us?

I change my beautiful daughter into her pajamas and feel her smooth chest and I cry when I think that at some point in the future a surgeon is going to take a scalpel and slice her open and stop her heart so he (or she) can mend it. Then there will be another scar on her body, a very visible reminder of this broken world and her broken heart that needed fixing and as her mother I cannot do a thing to save her.

Selfish because I am living a life so many mothers in Alder Hey dream of. I have a healthy daughter (apart from her heart), an active daughter, a daughter who so far is meeting all her milestones and is alert and with it. I know that Georgie is one of the blessed ones. I know I am one of the blessed mothers. I walked out of Alder Hey with my daughter in a car seat. Others have a far harder story to tell. I’m not saying this to gain sympathy because there are going to be people reading this who, rightly, wonder what on earth I have to whine about. I’m saying it just to raise awareness of what the parents of NICU babies can go through, even when things seem to be going incredibly well. There is a tension that is there for all parents – how long have we got? – but most parents don’t have the visible reminders of it to the same degree.

I believe God has a good plan for my daughter. I don’t know what it is. I know what I want it to be but I also know that the plans I had for my life didn’t include my incredible husband and absolutely darling daughter so there is every possibility the plans He has for Georgie’s life don’t include what I think they should. Parenthood is a faith walk unlike any I have had to date. I am learning what it truly means to trust, what it truly means to not have everything tightly in my hands and under my control. I am learning I am not as strong as I thought I was and that God is stronger than I thought He was. I am discovering there is a world full of hurting people and a world full of people wearing masks to disguise pain. I have found friends in people I didn’t expect to. I have discovered that for all its flaws, the NHS is full of caring, compassionate people who are doing their best and I am so blessed to live in a country where my daughter and I can access it.

I am learning.

I am selfish.

I am learning to be less selfish.

I am learning that parenthood is about laying aside what you want for the good of your child and that is a very hard thing to do and I have got a long way to go in this area.

So, I’m a learning, selfish mother who is still a work in progress in the ongoing area of holiness and sanctification. That probably just makes me human, doesn’t it?