When a baby dies

When a baby dies, a part of the world dies with him.

Cause a baby is not an isolated incident or an accident of the universe.

A baby carries within him the promise of the future. Of future generations. Of callings fulfilled. Of blessings in the making.

So when a baby dies, a part of the world dies with him…

When a baby dies, a part of his mother’s heart dies with him.

I couldn’t locate it physically, that part, but I can tell you it is the part responsible with belly laughter. And naïveté. And careless enjoyment of a simple moment.

When a baby dies, a part of his mother’s heart dies with him.

And for a while, for a long while, there is only sadness covering her life, like dew covers grass in the morning.

And the naïveté is gone. All gone. Never to return. It left when her baby was given no chance to live by the doctors. When she watched him disappear, day after day, behind a curtain of pain and slumber. When she held him tight, close to her heart and he took his last breath. When she took him into her bed, afterwards, and did what she had longed to do all along. Cuddle with her precious son.

And there is no more careless enjoyment of a simple moment. It’s all anguish. And scary scenarios the mind plays on automatic. And when there is joy, it is followed sharply by guilt.

Guilt to be alive. Guilt to not have been able to procreate a healthy baby.

Guilt of not having been able to protect him of illness. And pain. And death.

When a baby dies, a mother dies. A hundred deaths.

Of what ifs. Of why nots. And why hims.

Oh sweet face, how this mother misses your giggles.

Your presence.

Your sweetness.

Your eyes, telling a thousand stories.

Your cuddles.

Loving you, now and forever more.

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What is grief?

“Grief is the internal part of loss, how we feel. The internal work of grief is a process, a journey. It does not end on a certain day or date. It is as individual as each of us. Grief is real because loss is real. Each grief has its own imprint, as distinctive and as unique as the person we lost. The pain of loss is so intense, so heartbreaking, because in loving we deeply connect with another human being, and grief is the reflection of the connection that has been lost.”

For me, grief is a sneaky pain that hits me like an arrow, straight in the heart, when I least expect it.

Grief is this sadness that has descended over me like a thick blanket as soon as my baby took his last breath.

Grief is waking up happy in the morning only to be cruely reminded by my first thought that my baby is no longer with me.

Grief is duality: feeling happy for my friends who have had a baby boy in the last few weeks while the other half of my heart is weeping for my missing boy.

Grief is feeling guilty for being alive one moment and laughing hysterically the next.

Grief is slightly losing my marbles or consciously act as if I already have and saying “nipples” in the presence of my pastor. Because I can. And because I don’t care about what is appropriate anymore.

Grief is feeling foolishly in control of my emotions just to collapse in a pile of rubble the second I see on the street a father happily tickling his baby boy’s tummy.

Grief is keeping my son’s ashes close so I can fool yourself into believing he is doing this trip with us.

Grief is waking up in the morning feeling already exhausted.

Grief is naming my daughter’s new teddy Georgie and cuddling it when I go to bed.

Grief is carefully avoiding baby boy clothing aisles when I go out shopping.

Grief is eating to forget. And forgetting to eat.

Grief is the palpable fear that one day I will forget my baby’s face. His expressions. His talking eyebrows. His smiling eyes. That if I age less graciously and end up with Alzheimer’s I will forget the very existence of my baby son.

Grief is bursting into tears when my husband is trying to make love to me. Because my son’s face is the only thing I can see at that moment.

Grief is catching myself thinking “he would have been six months soon. I wonder if he would have been sitting like Emma at exactly six months.”

Grief is closing my eyes at night and relieving vividly imagehospital moments to the point that I want to jump in the car and drive there in the hope that I will find my baby son in the same room he used to suffer in.

Grief is the sadness of realising my baby will never grow beyond five and a half months. That I will never know how he would have been as a toddler. That I will never get to recognise the sound of his voice calling me mummy. The personality he would have developed.

Grief is stopping my daughter from asking questions again about my dead baby and his whereabouts. Because it is just too painful to have to repeat it again and again.

Grief is getting a sharp stab in the heart every time my eyes fall upon my baby’s smiling pictures.

Grief is getting irritated with people who talk too much. Or children who are too loud. Or friends who don’t mention my baby to me at all, as if he never existed.

Grief is having my heart shattered into a million pieces again and again and again…

 

 

To the enemy of our souls

So you thought you won. Deceived yourself again, just like with Jesus’ death. You thought this was the end. You thought that by asking for my baby’s life you have conquered.

But once again, you were wrong.

Yes, we miss our baby and we are devastated. Devastated he can’t enjoy the beauty of this world. Devastated he didn’t get to meet people we love. He didn’t get a chance to show them his quirky and beautiful personality.

We miss his presence. We miss touching him, we miss holding him, we miss smelling him, tickling him, cuddling him. Feeding him. Playing with him. Laughing with him.

We feel incomplete. We feel a profound sadness that covers everything we do in a layer of grey, like thick and choking dust. We feel lost. We feel desolate.

But I also feel God’s presence and favour in these dark days. I almost heard Him whispering today: “Anything. Anything you want, ask from my hand. I will give you.”

And just like Solomon, I will not ask for gold, nor possessions. I will ask for souls! I will ask for plunder! I will ask for a ravage in your camp!

A season of grace. A season of comforting following our immeasurable loss. A season of taking back.

No, I know I can’t take my baby son back. He is safe where he is. But I will take back ten fold…a hundred fold…a thousand fold.

You have been messing with my hubby’s mind. Threatened with more destruction. But let me tell you the Truth. “Him who is in us is stronger”, sooooo much stronger than you!

So you thought you won. Deceived yourself again. You messed with the wrong woman. You claimed the wrong baby! You watch and see the favour of The Lord!

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Dear Georgie: Bye bye my sweet boy!

Today you will leave us for good, baby boy. For three days we fooled ourselves into believing you were still here with us because your beautiful body was still in our midst. We were able to hold hands, pat your cheek and kiss your forehead. We were able to give you cuddles and wash you with our tears. But today, oh baby, today, your body will leave us too.

Your sister is angry with you again. She understands very well the finality that today will bring and doesn’t want to accept it. She didn’t want to say goodbye. She didn’t want to kiss your cheek. She is mad with you, for leaving her, sweetheart. She loved you sooo much, as you know. She didn’t get to spend the time she deserved with you. You were stuck in a hospital room for two months, away from her. She had to steal glances through the door and kisses when no one was looking. The days in the hospice were wonderful for her. The first thing she said every morning, as soon as she opened her eyes was “Let’s go and see Georgie, mummy!” Even after you left your body, she still had this need. To come and see you. To be with you. Draw you pictures. Give you flowers.

But that will be no more from today.

Tomorrow morning we will wake up in our house, empty of you. I am sorry, baba boo, but I had to ask your daddy to put your things away for now. I can’t look at them yet. But the house is now so very empty. Hollow. Quiet.

How will we fill the quietness, sweet boy?

And we know you are well. We know your reality is astounding and incomprehensible for us here. We know you are running free with Katie and Matilda Mae and Oscar and Ben and Abigail. We know Jesus has welcomed you in as an honoured guest and has kept you close ever since you left us. That He is your comfort and your portion now.

But somehow, somehow today this knowledge does not bring any comfort. Today we would like to find a way to bring you back. To press a magic button and delete the past two months. Wake up from the whole experice like from a bad, bad nightmare and be able to tickle you and see you smile. Feed you baby food. Take you for walks. Cuddle up on the sofa. Sing lullabies to you.

Sweet boy, baba boo, baby blue, lovey, forgive your mummy and her selfishness. She just misses you so, that is all. She will be well. One day. Don’t let my sorrow make you sad where you are.

You go now and play. Fly high, wee bird, fly free and way up high!

Loving you. Now and forever more.

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Death, where is your sting?

 

Our precious boy is gone. Gone home to be with his Heavenly Daddy.

We will miss him every moment of every day. We won’t be complete without him.

At the table. On holidays. While Tesco shopping. On school runs. In the quietness of the night. In the busyness of the day.

He will be the piece forever missing from our hearts.

We are relieved he is no longer in pain. These last couple of weeks we witnessed what no parent should ever witness. The slow disappearance of our bright and happy boy behind a veil of pain and morphine-induced, heavy dreams. The light slowly extinguishing from a baby who LOVED life. The burial of our dreams and hopes for a future which should have included him. Mourning the loss of “how it could have been.”

People wrote to me expressing their anger. At the unfairness of the situation. At life. At God.

But just like I explained in simple words to Emma, I will try and help you understand our view on things.

Emma now knows that her brother’s soul went to Jesus. That his body is for now an empty shell he no longer needs.

“The real Georgie is in heaven, mummy!”she would repeat time and again, to remind herself and us of the new reality…

Emma knows that it wasn’t God’s plan or design for her brother to suffer and die so early. She knows that there is a “baddy” in this world who designs sick, twisted, sophisticated plans  meant to bring pain and suffering. Even to tiny babies.

We now know, as parents who have been through fire alongside our baby boy, that life is to be cherished. That every breath is precious and every moment spent together a gift.

Pain, chemo and ultimately death are things we no longer fear. Because we have witnessed a tiny soul enduring all bravely, with a big grin on his sweet face. We heard him worship his creator in the early hours of the morning because he could not contain his adoration for Him. And we have learned to be brave and courageous too, for his sake and in his memory.

Fly high, wee bird! Inundate heaven with your giggles and songs and laughter! Cuddle up to Jesus, ride bikes, trains and airplanes, chat to the angels.

And death, one final question for you. Where is your sting???

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Dear Georgie: 100 things

 

 

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My precious boy, there are so many things you will miss here on earth I would have loved you to enjoy.

1. A splash in the sea

2. Warm, buttery toast

3. The feel of the rain on your cheeks

4. Teething

5. Play dates and mums and tots

6. Watermelon

7. Mosquito bites

8. Ice cream

9. Bedtime stories

10. Christmas mornings

11. Warm socks

12. Sippy cups

13. Toy trains and airplanes

14. Cuddles in mummy and daddy’s bed in the morning

15. Squabbles with Emma

16. Learning to share toys

17. Potty training

18. Bee stings

19. Superman dreams

20. Playing football with daddy

21. Learning to cook with mummy

22. Scones

23. iPad games and movies

24. Playgroup

25. The local library

26. Big boy pants

27. Your first girlfriend in primary school

28. Your first kiss

29. Your first heartbreak

30. Finding your true love

31. Sex

32. Your first summer job

33. Your first paid job

34. Your primary school teachers

35. Making friends

36. Finding out your passion in life

37. The smell of freshly baked bread

38. Your favourite cartoon

39. Wearing the same Superman suit for a whole week

40. Raspberries

41. Your favourite colour

42. Being spoilt rotten by your sister

43. Being kissed sore by daddy

44. Being told off by mummy

45. Travelling

46. Music

47. Shoes

48. Flowers

49. Long baths

50. Bikes

51. Buzz Lightyear

52. Socks with holes

53. Paper airplanes

54. Learning to read and write

55. Lion King

56. Grandparents

57. Fizzy drinks

58. Digging out for worms

59. Mud pies

60. Olives

61. Olive groves

62. The Jungle Book

63. Having a pet fish. Or dog.

64. Scraped knees

65. Shorts and t-shirts

66. Beer

67. Fireworks

68. Football matches

69. Baby food

70. Texting

71. Throwing pebbles in a river

72. Stormy weather

73. Toy car collections

74. Legos

75. Ties and bow ties

76. Flip flops

77. Running through the park

78. Slides and see saws

79. Waterfalls

80. Play stations

81. Bougatza

82. Ripe tomatoes

83. Grammar school

84. Wedding ring picking

85. Marriage proposal

86. The birth of your first child. And second. And third?

87. Teenage rage

88. Ear piercings

89. Your first car

90. Stinky trainers

91. Sweaty t-shirts

92. Cherries

93. Arts and crafts

94. Your parents funeral services

95. Seeing your nephews and nieces grow to adore you

96. Butterflies

97. Swimming/bouldering

98. Skiing with your dad

99. Growing pains

100. Liquid soap

 

 

 

 

What we found unhelpful while looking after a terminally ill child

I need to rant. I so do! 

Although we found most people helpful considerate, kind and understanding during the past two months, there were things that time and again tipped us over the edge. I am not writing this post to make people feel bad but to let people know what is appropriate and what is not when someone’s baby or child is very ill.

1. Don’t say stupid things like “chemo kills” to a parent whose baby is about to start chemotherapy!

The evening before Georgie was due to start his treatment a “friend” kept Alex up with emails about how dangerous chemo is for the human body and how is eventually kills…And actually,dear “friend”, it doesn’t. Most children undergoing chemo go through it successfully and their lives are restored back to health. This comes from nurses who have been working in the cancer ward for decades. Georgie’s case has been atypical and unique. Doctors were astounded he didn’t respond to treatment. The norm would have been that he did. So please, please, check your facts before you speak! A parent facing the scary thought of putting their child through such a harsh treatment doesn’t need to hear stupid things like that, for crying out loud!!!

2. Don’t satisfy your curiosity about a medical condition by asking a parent tens of questions

The last thing a parent wants to do, after being trapped in a tiny and depressing hospital room, caring for a sick child is to answer questions. I found it soooo tiring, time and again. I actually ended up shopping far away from home, as I was terrified of running into people who would start asking questions. I know that some people think that they show care by asking but hey, you know what? It doesn’t help! If questioning is your way of processing a situation then get online, search about the condition, chat to a friend to to your spouse but never, never overwhelm a parent by asking more that “How can I help?” And don’t worry, the answer is usually “nothing” but your sensitive approach will be forever appreciated.

3. Don’t ask “How is he doing?” 

Until yesterday, we have still received phone calls and messages on Facebook asking how he was. I have been very good at updating about Georgie on Facebook until….there was nothing to update. Once we moved into the hospice, I let everybody know via Facebook that I will stop updating. And the majority understood. But there were still people who would ask! Again, I know that they care and want to show love. But hey, that is not the way! How is he? He is dying. He is sleeping nonstop. He moved from being too sore to touch(I haven’t held my baby in ages for fear of not hurting him) to being generally unresponsive to any stimulation. He can’t feel his daddy holding his hand and kissing him. He doesn’t feel me petting his head. He doesn’t show that he understands when I tickle his belly or kiss his little feet. His eyes have moved from expressing pain to expressing nothing. Unfocused. His body is wasting away. His muscles are growing limp from not being used. This is how he is! We don’t talk about it because we want to spare you the details. Because we believe our baby has the right to die with dignity. Without any gory details revealed. So please stop asking!

4. Keep your feelings to yourself

How many times have I heard from well-intentioned people “his story has made me cry.” Well, I am truly sorry but let’s put it this way. You still have your kids to tuck in bed at night. You didn’t have to witness a fraction of the pain and the distress our baby has been through. So put your big girl/boy knickers on and talk to me with a smile on your face. And if this story has affected you, mourn the terrible waste of love, life and opportunity in the privacy of your home. Like we do as his parents.

5. Do what needs done!

This one is for relatives whose grandchildren, nephews or nieces die young. Get over yourself! We have witnessed a wide, wide range of responses from our families. People who shut themselves up COMPLETELY from the moment Georgie was diagnosed. Not a single word. Or email. Or text. Nada! Or people who decided to use their preaching talents on us, despite us asking them politely to refrain. 

Or people calling in the middle of the night, crying, unable to cope with their own emotions. Really???

The most hurtful for me must be the “I don’t want to see him like this, so we won’t be coming to be with you.” Say what? He is your only grandson! He is the son of your son, who now grieves like never before and needs you like never before. Your feelings should at this time come second and your child first. Put on a brave face, bottle it tight, get your head out of …sand and be here for your son, for goodness’ sake!

6. Don’t pretend it is okay.

We have had people visiting as if nothing had happened. Even expecting cups of tea. Or pretending to be happy. Oh, yeah, we can tell the difference. Or pretending he wasn’t in the room. Or..or..or..He is still here. He is still my son. He is still loved beyond any stretch of imagination by both his parents and by his silly sister. He was wanted, expected eagerly, given the best of everything. He is for us precious, beloved and he will stay in our hearts forever. So don’t pretend around us. Don’t pretend you understand. Don’t pretend this is ok. 

So, what can you DO or SAY in similar situations?

Give a cuddle. Hold the hand of the one in pain. Say “I don’t know what to say.” Take the siblings out so that the parents can spend the last days, hours with the dying child. If you are crafty, do small keepsakes for the family. We have been blessed with photo sessions, canvases, photo frames…etc. Things that will keep the memory alive. If you are good with computers put together a short clip celebrating the life of the dying child. Him smiling. Very important for the family in the weeks and months to come, when the memory of him suffering will fade and the brain will do a wonderful thing called selection. Choosing to remember the good moments. Say “we love you.” And be patient and forgiving. Sorry for this post. I just needed to rant…

 

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