Happy birthday Daddy, I miss you and love you.

Apparently today, 15th November, is ‘I love to write day’? No idea who, where, what or why that is, but the date is significant to me as it’s my Dad’s birthday – he would have turned 71. So in honour of the day, I’m going to write briefly about him.

Above is my recent sketch from a favourite photo of him taken on my wedding day in 1994, he is embracing me as I leave to go away on honeymoon (I didn’t include myself in the sketch as it’s the back of my head and big wedding hairdos are hard to draw). I love this photograph but it’s a bitter reminder of how much I have missed his hugs for the past seventeen years.

Continue reading Happy birthday Daddy, I miss you and love you.

Remembering a child at Christmas

Last Christmas was so unbearably sad. My eight year old nephew had passed away on the 17th December and we just did not know how to make our way through the ‘season of joy’. Everything was bitter, cold and so very dark. Continue reading Remembering a child at Christmas

Fear, Anxiety and Worry- the three false lovers I’m breaking-up with.

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finding calm in the storm

For the sake of my kids and society at large I am practiced at putting on a brave face but I am struggling a lot at the moment; every now and then the facade cracks and I spill awkward tears before strangers. These past six months have been a dark time and possibly the name of my blog isn’t appropriate anymore! I have often felt like I am being beaten relentlessly by crashing waves of despair as I cling to the Rock of Ages.

Every parent’s worst nightmare is the death of their child, I kept it in my peripheral vision, too fearful to turn my head and look at it full in the face. But I couldn’t keep it there, it sought us out and gripped us with it’s awful features last December when my sister and her husband’s little boy died. I have looked into the abhorrent face of death a few times and I know it shows no discretion.

Now a further blow as these past few days have brought a new anguish into our lives – one of my own children has been referred to a specialist after some worrying finds that point to a rare disease. How can I ‘keep strong’ and ‘hang in there’ and ‘look after myself’? It is hard to see her in so much pain, it is hard not knowing what is wrong, it is hard facing into visits to a neurosurgeon, it is hard knowing from experience how our children don’t always come through things like this.

I am being pursued by three companions whom I hate. Like falling in love, my response involves my whole body, but it is the opposite to love: my heart is filled with fear, my stomach burns with anxiety and my head churns with worry. The nights are wakeful and the days are watchful. These companions have the potential to consume and ultimately destroy me.

So I know I have to seek a way through this time that is shrouded in darkness and find a light for the way ahead. I need to swap the cruel lies in my head whispered to me in the dark by these false lovers and replace them with words of truth. I can’t take those lies away by myself as I have tried and failed, they have to be replaced by something else and Someone else.

I hear some new but familiar words, the whisperings are kinder and stronger, I recognise the voice of the lover of my soul:

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

Therefore we will not fear, though the earth give way
    and the mountains fall into the heart of the sea. Psalm 46:2

You will not fear the terror of night,
    nor the arrow that flies by day. Psalm 91:5

 So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand. Isaiah 41:10

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Phil 4:6

Search me, God, and know my heart;
    test me and know my anxious thoughts. Psalm 139:33

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Matthew 6:34

My heart lifts suddenly, my mind settles and I feel peace descend. I don’t know what will happen tomorrow or in six months time, but one thing I do know, no matter what, even if I can’t feel it and the world comes crashing down around me, God loves me. I don’t understand the ‘why’s’ of our world but I do trust in the sovereignty and wisdom of our Creator.

There is no fear in love. But perfect love drives out fear, because fear has to do with punishment.  1 John 4:18

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39

I have a Lover who is greater than anything that life throws in my path. So I cast away fear because I see it has already been replaced with love, I dump anxiety and put trust in its place, I put aside my worry and turn my face towards hope and this has, at last, brought me to a place of peace, certainty and gratitude.

More on illness and symptoms here.

It's six months since my little nephew died.

The day Oliver died
17 December 2016, the Day Oliver died

On the 17th December 2016 my little 8 year old nephew died after a brief fight with illness following a strep throat which triggered a very rare and fatal syndrome called HLH (Hemophagocytic Lymphohistiocytosis).

The easiest part of parenting is talking to other parents about how very hard it is to be a parent. The hardest part of parenting is coming to terms with the mortality of a child. There is nothing lighthearted or flippant about this – the topic is so painful and dark it is very difficult to find any light or hope. And yet, my faith compels me to acknowledge there is. I would be a hypocrite if I didn’t point to the truth, to honestly speak of what lies in my heart, buried deep within the murk of parental fears and the anguish of grief.

I know that everything we have is a gift to us, we are guardians and caretakers of all we have. These things do not belong to us and even though they may be our dearest treasures and we are tempted to love these gifts more than we love the Giver, we have to remain centred in the knowledge that all we see and hold are not only temporal but also temporary.

But when it comes to our children it’s just so very difficult isn’t it? They are the treasures we have in our firmest grip, the ones we wish to hold on to the tightest.

The Enemy, Satan, is described as a thief and that is truly how I felt when my young nephew died last December, that we had been robbed, that his life in all it’s potential had been stolen. Any of the joy in all of his future birthday celebrations have been stolen, any future grandchildren my sister and husband could have had from him have been stolen. Not only that but they, and us all, had been physically robbed of all joy, comfort and energy in the immediate weeks after his death. Christmas was stolen too. I didn’t expect this but the relationship with my best-friend sister I once knew had even been stolen, it’s changed from the light-hearted easy going thing it was, into something filled with jagged edges of pain. She has a closed door in her heart to a room I haven’t been in.

It’s really hard in all of that to find any joy or hope, anything good at all.

Early last year sometime I watched a movie about a true story of a little boy who supposedly died and came back to life. When I hear these stories, I’m always a bit sceptical, they seem a little far fetched or unbelievable, even though I do believe in life after death and the resurrection. The question I always ask is WHY? Why would God send a child back to this world when heaven is a better place to be? Wouldn’t it be better for the child if they stayed with Him? What struck me most about that film was the scene where the father, a pastor, pleaded for the life of his child. He begged God to allow his child to stay on earth, and so he does. The little boy says he saw Jesus who told him he was going back but the boy actually wanted to stay in heaven! At that point the thought crossed my mind that if I truly believed that heaven is a better place than earth, then it would be a selfless act of any parent to allow their child to die. Perhaps if my child was ever at the point of death, I should deny myself and willingly allow them to go?

It was very much an argument of the head and not of the heart! How little was I to know that within the year I would be pleading for my nephew’s life and selfishly begging for my kids to be spared from having inherited the same syndrome.

After Oliver died I read C.S. Lewis’s book ‘A Grief Observed’ where he comes to terms with his wife’s death. This passage struck me:

I never even raised the question of whether a return, if it were possible, would be good for her. I want her back as an ingredient of my past. Could I have wished her anything worse? Having got once through death, to come back and then at some later date, have all her dying to do over again? They call Stephen the first martyr. Hadn’t Lazarus the rawer deal?

Of course it would be better for any child not to have to endure the suffering this world provides. That they are better off not having to grow up and experience the possibility of what we are experiencing ourselves now, as parents, grandparents, aunts and uncles. There is no doubt that if we believe in the bodily resurrection, and this life on earth is just a drop in the ocean of eternity, that we have a promise of hope ahead of us to lift the darkness. The problem though is how we deal with the pain of suffering and grief for the moment. How do we transfer what we believe in our hearts into our actions?

Grief is so physical, your whole body feels it. My sister and brother-in-law’s faces changed, red-eyed and staring, their skin greyed,  lines appeared suddenly where there weren’t any before. Their forms bent and curled inwards as if to protect their broken hearts, finding it hard to speak or eat or think about anything else. My sister says now the worst is not being able to hold him again, it’s the physical nature of loss that is so keen. As a consequence I am trying to hold my children a little closer and a little longer.

In those first days and weeks I walked around at times feeling like a shaken-up bottle of cola with the lid on the verge of being cracked open. I felt compelled to escape from groups in order to allow the tears to permit some temporary relief. Those moments are not constant any more for me, but for them, his parents, it’s a daily struggle and a lonely walk. 

Apart from trying to navigate the turbulence of our body’s sufferings, there is also the torment of the journey of the mind. I had many questions about why this has happened. I have been angry with God for allowing death to rear it’s ugly head in our lives again after the untimely and traumatic death of my father all those years ago. I hate how its evil stench has crept back into my sister’s home and lingers across all of ours too. It is distressing to see how much they are burdened by this heavy load for which I am unable offer much relief. It’s not that I question the existence of God, I know that he is good, it’s just that I didn’t feel it. I identify with Lewis when he says:

“The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not, ‘So there’s no God after all,’ but, ‘So this is what God’s really like. Deceive yourself no longer.’”

They say time heals, and it’s true, the sharp edges of grief of my father’s death have been worn down over nearly two decades to blunt knives that twist occasionally. In small ways it has eased with missing little Oli too, but ever so slowly and never completely will my sister and brother-in-law come to terms with their loss. They put on a brave face to the world and they are comforted by friends and family; bravery and comfort helps for a while but there needs to be hope too, in something greater and more permanent, otherwise when those desert us, all we have left is ourselves and our grief.

We know we have been robbed and so what we long for with all our hearts is repayment for our loss, we seek redemption. I know death and specifically the death of a child, is so abhorrent to us because it’s so unnaural. It was not what God intended and so it took great measures for Him to redeem us from it – a supreme act of love and sacrifice, the life of His son.

Lewis observes:

When we all experience pain, a little courage helps more than much knowledge, a little human sympathy more than much courage, and the least tincture of the love of God more than all.

I could flounder around looking throughout the world for answers to put find meaning in all this but there is only one place I know for certain where I will find truth and that is in God’s word. This is the passage I read randomly this morning in the Daily Bread Bible reading booklet:

Jesus said, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die” (John 11:25–26). Often when confronted with death, we are tempted to either deny how painful it is or to live without hope, only seeing the grief. In this passage, Jesus holds together both the horror of death and the sure promise of life. Because death is a tragic distortion of God’s good creation, Jesus as the Resurrection and Life is all that is opposed to it. If we read the whole story of Lazarus’s resurrection, we see a fuller picture of how Jesus responds to death and grief. He is “deeply moved” and “troubled” (John 11:33) and He weeps (v. 35). Seeing death in all its horror, He defiantly overcomes it and raises Lazarus to life. Jesus’s shout, “Lazarus, come out!” (v. 43) points to the hope of our own bodily resurrection.

It’s clear that Jesus is the only one who sheds light on both grief and death as well as hope and life. There is no other way to find solace or consolation. In fact, more than that, there is joy in knowing that we have a hope of resurrection and being reunited with those we miss and long for.

I find it a comfort knowing I am not alone in this world that has been tainted by pain, sorrow and death. For a time I have been Lewis’s man in the dark who thinks he is in a cellar or dungeon but:

Then there comes a sound. He thinks it might be a sound from far off—waves or wind-blown trees or cattle half a mile away. And if so, it proves he’s not in a cellar, but free, in the open air. Or, it may be a much smaller sound close at hand—a chuckle of laughter. And if so, there is a friend just beside him in the dark.

More than that even, not only am I not alone but that there is a real and true solution to our worst fears and a hope for what we desire the most: redemption for all that is, and all who are, lost, broken, destroyed or stolen.

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. …

It is written: “I believed; therefore I have spoken.”Since we have that same spirit of[c] faith, we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you to himself. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal2 Corinthians 4:8-18

Confounding Symptoms. If only…

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My father was a neurosurgeon, and he made mistakes. If he had been more of a machine and less human, was never tired or sick himself and always made the right decisions, there are still vast swathes of unchartered territory in the medical understanding of how our bodies work. To put it simply, what makes us live and die is a scientific mystery. If only we were perfect.

Now, three months after my little nephew died, and the bitter reality is seeping in that he has left us, the autopsy results are still inconclusive. His symptoms point to something greater, rarer and not understood. For the month that he was sick, I know they fought with all their accumulated experience and knowledge to make him live, but it wasn’t enough. If only…

This morning one of my dearest friends is currently undergoing a biopsy test. For the past five years, through a haze of pain, she has been on an endless quest for answers. Her symptoms have lain undiagnosed for so long, but how could they have been missed? I’d be lying if I don’t admit that I am terrified of losing my friend, and after all this time of them trying to find answers. If only…

And yet I still cling to my false impression of the infallibility of the medical profession. I still have hope that when my child is sick they will be made well again because I know that we have come a long way from the days when women routinely lost their children to mysterious illnesses. I know my child’s life has been spared a couple of time through early intervention of infection and I am grateful for those times. I also have hope in this unexplained mystery, the intervention of prayer, even though my own payers have failed miserably in the past. If only…

Later I will be calling the doctor to take my child, who has had mysterious pains and unexplained symptoms, for another appointment. Even though I’ve been before, I’m not ready to give up hope. I do wish my Dad was still here so I could ask him for his advice. If only…

In response to the Daily Prompt: Symptom