Tag Archives: neonatal death

To Whom Shall I Go?

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The day after Thomas’ funeral I visited Father F.

“I feel so angry with God,” I confessed. “All the doctors told me that there was little possibility that Thomas would live after birth, but I refused to accept that. I told them that there was a greater Power than them. I insisted God could heal our baby.”

I had on many occasions voiced my faith in God. The doctors had looked at me with pity. Why wouldn’t I just accept their prognosis? Why did I keep burying my head in the sand, unable to accept reality? They didn’t think God would help me. I hoped so much He would.

But the doctors had been right and I’d been wrong. God hadn’t come to my rescue.

“God just doesn’t care about me,” I said to Father. “He doesn’t love me. Why did He allow such suffering when I was willing to profess my faith in Him? It wasn’t easy going out on a limb telling those doctors I had full confidence in God. Maybe they thought I was crazy.”

And then I said, “I’ve decided I’m never going to Mass again.”

Father told me a story. When he was a seminarian in Vietnam, he was imprisoned with other seminarians and priests. All he’d wanted to do was give his life to God and God had allowed Father F to be imprisoned. It didn’t seem fair. He wanted to do good work for God and there he was shut up in a cell. He had survived by eating rats. He had suffered. And he felt that God had abandoned him. “I thought that God didn’t care about me at all,” he finished.

Then Father gave me a hug, a hug from one sufferer to another. Tears flowed down my face and my body shook and Father held me. He understood.

A few minutes later, I dried my eyes and attempted a smile. “Well, I guess I’ll see you at Mass on Sunday after all,” I said.

Father smiled. Yes, he understood.

I think about the apostles when Jesus said they must eat His flesh and drink His blood if they wanted eternal life.

After this many of his disciples drew back and no longer went about with him. Jesus said to the twelve, “Do you also wish to go away?” Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life; and we have believed, and have come to know, that you are the Holy One of God.” 

“To whom shall we go?” The apostles didn’t understand but they knew Jesus alone had the words of eternal life. He was the Son of God and they believed.

I also didn’t understand. Why did God allow Thomas to die? I had tried so hard to stand up and proclaim my Faith in Him. Why was I suffering? I had no idea but I knew I had to trust Him.

So I turned to God. There was nowhere else for me to go. For who else could bring me through the pain? I knew I couldn’t survive on my own. I needed God.

And He didn’t let me down. I survived.

One day, I am sure, just like the apostles, I will understand why God allowed Thomas to die. Even now, I catch glimpses of the meaning of God’s plan. But to understand fully is no longer important. “You have the words of eternal life and we have believed.” I believe. That is all that really matters.

If you would like to share more of my grief stories, please visit my blog Sue Elvis Writes

God Can Do Anything

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A few weeks after our baby died, we took our other children to the beach in an attempt to relieve the heaviness of grief. Just for a few hours we wanted to forget the pain and do something normal and happy, and see our children’s faces light up with delight.

As they splashed in the lagoon and built sand castles, I wandered to the edge of the sea, and stood quietly by myself. I watched the waves rolling in one after another, breaking onto the shore and over my feet. The bright sunlight glinted off the water. A refreshing salty breeze lifted my hair.

For a long time I stared out at the horizon, oblivious to everything but the ocean. It was so vast and seemed unending. It was magnificent and powerful and beautiful. And while I stood there on the sand, I saw God:

All-knowing

All-loving

Almighty

and eternal.

I was a mere grain of sand standing before a God who is so enormous, He goes on and on forever, without end.  I am one tiny soul in the universe of creation but despite this, I was aware I was still important. God was looking at me, and He knew all about my grief.

My whole body throbbed with pain. I could do nothing about my suffering. But I knew that my all-consuming grief was nothing compared to God. All He had to do was blow one tiny breath, very gently over me, and I would be healed. God could do that. He can do anything.

God reached down, scooped me up, and wrapped me in Love. And hope washed through me. I prayed.

Of course, my grief didn’t vanish in a moment while I stood on that beach looking out at the waves. I wasn’t healed in an instant. But I began to hope. Whenever I was tempted to believe that nothing would ever defeat my grief, I thought of the never-ending ocean and I remembered…

God is the Creator of everything,

For He made all things from nothing:

He is the Holy One,

A Mystery Awesome and Wondrous,

The Supreme Being, the Supreme Spirit,

All-knowing, All-loving, Almighty and Eternal.

God can wipe away any pain. God can heal. God can do anything.

I blog at Sue Elvis Writes. Please feel welcome to visit and share more of my posts.

One Day at a Time

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I open my eyes, and I immediately realise that nothing has changed overnight. There is still a huge ache in my chest, and one all-consuming thought in my mind: Thomas. Although it is still very early- the sun has hardly risen – I know I have to get up. If I stay in bed, I will start to think about my baby. I will wonder if I will survive Thomas’ death and the tears will again begin to flow. I don’t want to start the day in a melancholy mood without hope, so I swing my legs over the side of the bed and get moving.

I shower and dress and eat breakfast automatically, and soon I find myself standing in the kitchen. A wave of grief sweeps through me, but I set my lips firmly together and I banish all thoughts of my baby. Instead, I think about washing the dishes.

But a voice says, “Give in. Cry!”

And the tears start to seep from my eyes.

“Who can be expected to shoulder this burden? It’s too much. No one cares that you’re hurting so much. Give in. It will never get any better.”

The tears are flowing freely now and I sob. I want to sink to the floor, allowing my misery to overcome me. I want to cry, “It’s all too difficult. I’ve had enough.” I want to despair.

But I don’t.

I start to say, “Saint Michael the Archangel, defend us in the battle.

Be our protection against the malice and the snares of the devil…”

I put one foot in front of the other and keep going, and somehow I make it through this difficult moment.  I call upon St Michael the Archangel many times, and I keep moving through the day, until it finally ends.

As I climb into bed, I think about the next day and the next and the next… How long will I have to keep struggling through this dark grief-filled world? Will it really get any better?

And then I realise something. I have survived another day.

I hear a voice, “Don’t look ahead. Take one day at a time. That’s all you have to do. You’re doing well.”

And I reply, “Jesus, I trust in you.”

Saint Michael the Archangel,
defend us in the battle.
Be our protection against the malice and snares of the devil.
May God rebuke him, we humbly pray;
and do Thou, O Prince of the Heavenly Host,
by the Divine Power of God,
cast into hell Satan and all the other evil spirits
who roam through the world seeking the ruin of souls.

Please share more of my grief posts at my blog, Sue Elvis Writes

Keep Trusting

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When I found out that our unborn baby was unlikely to live after birth, I truly believed God could heal him. I knew He had the power to fix Thomas’ diaphragmatic hernia and save me from so much suffering. But would He?

I pleaded with God. I prayed and prayed and prayed. I threw myself down before Him and asked Him to have pity on me. “I am not strong enough for this, Lord. I am so weak. I will never survive.”

But although I had full confidence in God’s power to perform miracles, I had to face the fact He might not grant one to me. I might have to give birth to my child, hold him as he died, bury him, and then grieve. In some ways, this seemed the most likely thing to happen.

And that’s what did happen. God chose not to heal my baby, Thomas. He chose not to spare me the deep pain of bereavement. He chose to let me, in all my weakness, suffer.

I look back over the years to Thomas’ death. I remember the crushing weight of grief, the black sunless world I lived in for a long time, the near-despair that threatened to consume me. I think about the pain that still lives hidden deep within me. And I look at God and I say, “Thank you.”

Thank you for not granting me a miracle and letting me suffer.

I could never have willingly asked for suffering. God knew this but He sent it anyway. And through that suffering He has drawn me closer to Him; suffering has changed who I am; suffering has made me so aware of God’s love for me… I could write so much about how the pain of losing a child has affected my life.

I imagine going back in time, and God saying, “ I could grant you a miracle or … if you are willing to trust Me, I would like to take you on a journey, filled admittedly with deep pain, but also overflowing with grace and love. Don’t worry about being weak as I will be there to give you My strength. What will it be?”

And I hope I could say, “Give me Your strength, Lord. I am willing to go where You lead.”

I wish I could have said that years ago. But I couldn’t. I was far too afraid.

Telling the end of a story is not always helpful to those in the middle of the journey. “That’s all right for you, Sue. You’re no longer bowed down by the great heavy weight of grief. You no longer wonder if you’ll get through each day. You know you survived. But me?”

I reply, “Keep trusting.”

The words “Jesus, I trust in You” were constantly on my lips while I was grieving. Trust God who loves you so very much. Everything that He allows is in His plan for you. Accept, trust and you will survive. Will it be easy? No. But then nothing of value ever is. And God is the greatest Gift of all.

By receiving suffering, I lost Thomas. Or did I? No, I still have my child. Of course, Thomas is not here with me but he is waiting.

And one day I will be with Thomas. I will be with God. I will have everything.

Please share more of my grief stories on my blog Sue Elvis Writes

Finding Meaning in a Baby’s Death

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When I was a newly bereaved parent I went along to a grief support group. Every month a few mothers would gather and we’d share our stories and our pain. Every month we talked about the same things. We went round and round in circles, going over the same ground and we never seemed to progress a step towards healing.

And although I appreciated the time the volunteers gave to the group to help mothers like me, eventually I had enough. I didn’t want to sit still any longer, wallowing in my misery.  I wanted to move forward. I wanted once again to know joy and to smile.  To do this, I had to find some meaning in my son’s death.  I pondered: Did he live and die for nothing? And so was my pain worthless? Or could I make some sense of the whole situation?

In my search for an answer I found myself thinking about God’s plan for my life, acceptance and trust, the cross and the value of suffering. My baby died and I was suffering. Was this suffering of value? Could I accept it? Could I trust God was looking after me? And would God eventually lead me to healing?

Does anyone else feel the need to move forward towards healing? Are you pondering such questions as mine?

Please feel welcome to share your thoughts and my post, Finding Meaning in a Baby’s Death on my blog Sue Elvis Writes, where they are many other grief stories.

A Grief Reflection: If Only…

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By Sue Elvis

From my grief diary:

2nd December
… I feel like staying home for Christmas instead of going to Sarah and Shaun’s as planned. It will be hard to stay cheerful and festive and I don’t want to spoil anyone’s day. In fact I feel like staying in my room and not seeing anyone until I feel better. This may be months. I don’t want to impose on anyone, to be a nuisance and to have people get fed-up with me talking about Thomas all the time…

 11th December
… Christmas is getting nearer and as it approaches I feel even more miserable. I don’t want to shop or send Christmas cards. I don’t even want to receive cards or presents. It is difficult to show an interest in the Christmas cooking or other plans…

18th December 1999
Andy and I went to finish the Christmas shopping… I kept thinking if only we had our baby in our arms, we could be happy this Christmas…

23rd December 1999
Andy came home early for the Christmas holidays. I get moments of Christmas excitement which get extinguished very quickly as I remember Thomas…

My baby died six weeks before Christmas and as Christmas Day drew closer, an added burden dragged upon my heart. I felt like the only sorrowful person in a world of rejoicing people.

Friends asked us to join in with their celebrations and although we did accept their invitation, all I really wanted to do was spend Christmas alone with my misery.  The effort needed to look cheerful seemed beyond me and I didn’t want to be blamed for spoiling everyone else’s joy.

But every now and then, when I least expected it, that well-known feeling of Christmas excitement and anticipation passed through me: at the sound of a beautiful carol, at the thought of my children unwrapping their gifts… But then all at once I’d remember, and the excitement would vanish.

I imagined my son six weeks old in my arms, and I thought “If only… If only my baby had been healthy… If only God had healed him in the womb… If only the doctors had been able to save him… If only he were here with us, I could be happy this Christmas and everything would be alright.”

But of course, ‘if only’ never happens. That isn’t the way to healing and joy and peace. I had to find another way: acceptance, trust, prayer…

Do you ever think, “If only…”?

Please share my story If Only… at my blog Sue Elvis Writes

The Sacrifice of Christmas Shopping

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By Sue Elvis

A Grief Reflection

My baby Thomas died some years ago, in the month of November, and my grief was still so very fresh when I had to start thinking about Christmas preparations and Christmas shopping. These seemed so unimportant and I really wanted to forget Christmas all together. But I knew I couldn’t. I knew I couldn’t deny my other children the joy and excitement they really needed after the sorrow of the past months. 

From my diary:
“I spent most of yesterday shopping. I hate Christmas shopping. I can never decide what to buy and I’m not at all interested in celebrating and being joyful. All our Christmas cards are mixed up with sympathy cards. They don’t seem to go together somehow. I heard a young baby cry in the book shop and I had to move along quickly because I felt tearful…” 

Yes, it was very difficult. But looking back, I realise that making that effort for my children helped me to keep going. Focusing on my loved ones helped me survive. 

Does anyone have any suggestions for coping with Christmas preparations that need to be done, but seem very unimportant?

Please share my longer story, The Sacrifice of Christmas Shopping on my blog, Sue Elvis Writes

Stories of Grief, Love and Hope

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By Sue Elvis

Some years ago, I used to say, “I’m ready to do Your Will, Lord but please don’t send me any suffering.” Perhaps this wasn’t much of an offering. I knew suffering would involve much pain and I was afraid.
Often when I try to push fears to the back of my mind, God arranges matters so that I have to face whatever I feel I can’t deal with. And this was the case in 1999 when, for the first time in my life, I was plunged into a sea of suffering like nothing I’d ever experienced before. One day I was in full control of my life, the next, my world was in pieces and I was choked with the feeling that I wouldn’t survive. Finding out that our unborn baby was unlikely to survive after birth was a very frightening, distressing feeling and I was full of panic as I looked ahead to what should have been a happy event in our lives.
The next five months were a mixture of calm as I tried to place my trust in God, and despair as I contemplated holding our dead child in my arms. How could a mother be expected to survive the death of her own child? I prayed so much during those months asking God for a miracle of healing for our child.
Thomas was born and it was soon obvious that God had not healed him. There are not enough words to describe our pain and suffering. We watched Thomas being wheeled away to the intensive care unit, seconds after his birth, and our first look at him came hours later: a tiny body hooked up to a life support machine. Thomas lived 28 hours and that time seemed like months. We arrived back home 48 hours after setting off for the hospital and it was inconceivable that we had been away for such a short time. Our lives had been changed forever and it was difficult to come home and pick up the threads of everyday life…
This is the start to one of my Thomas stories. It comes from my book Grief, Love and Hope.
I started writing my Thomas Stories quite a few years ago. At first I just wanted to record our son’s life. He lived for only a fleeting moment and I wanted to say, “I have a son. His name is Thomas. He didn’t live very long but his life was valuable. And we love him so very much.”

Later a friend suggested I share my stories so that I could connect with other bereaved parents. Grieving is such a lonely existence. Sometimes we feel we are going crazy. Does anyone else feel like we do? And does anyone survive the deep sorrow of losing a child? By sharing we can encourage each other, give hope and lessen that feeling of isolation.
I wrote my first Thomas Stories for a homeschooling newsletter. Then I gathered these stories together, and added some more: my book Grief, Love and Hope came into existence.
After the publication of the book, I was very surprised to find I had still more to say about Thomas. He might have lived only for one day but he has affected our lives forever. I am continually amazed how our son works his way into my writing. So more Thomas Stories were written and I have been posting them on my blog Sue Elvis Writes, as well as here on this blog.
But now I feel my stories need a home of their own, a blog just for Thomas. So I have created Stories of Grief, Love and Hope.
I will be gathering all my Thomas stories together and posting them on this new blog. Some you will find in my book Grief, Love and Hope. And some have been published here and some on my Sue Elvis Writes blog.  I am sure Thomas will keep on inspiring new stories so there will probably be entirely new posts too.
I would also like to write about the experience of miscarriage after losing seven little souls much too early.
Maybe you have experienced the sorrow of losing a child yourself, or you might be supporting the bereaved, or maybe you’d just like to learn more about the experience of grief.
If you would like to share my stories of our precious son, please visit my new blog, Stories of Grief, Love and Hope. I would feel very honoured if you read my posts.
And if you know of anyone who is suffering and might want to connect with another bereaved parent, I would be grateful if you told them about my blog.
Please visit Sue Elvis Writes and Stories of Grief, Love and Hope

The Very Lonely Experience of Grief

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By Sue Elvis
At an 18 week ultrasound our unborn baby was diagnosed with a diaphragmatic hernia. We were told our baby would probably not survive after birth because there was not enough room in his lung cavity to allow sufficient lung tissue to develop: he wouldn’t be able to breathe without the aid of a respirator. We prayed for a miracle but Thomas lived only 28 hours. He was born on 9th November.
From my diary
26th November
I saw Dr M. for the first time since Thomas died. I don’t know if she was going to say anything about our baby but I got out my photo box to show her anyway. Dr M. cried as she looked at the photos…
The receptionist, Jenny asked me how I was, on my way out. I told her we’d had our baby, and it was obvious that it hadn’t crossed her mind all was not well. She’d forgotten we’d had problems during the pregnancy. She was taken aback when I said, “He died two weeks ago.” Jenny also looked at the photos and she also cried. I was quite calm and dry-eyed and felt like the only person in control.
However moods change quickly and this afternoon I am weepy…

I remember how reluctant people were to bring up the subject of our baby. I wanted and needed to talk about Thomas but no one said, “Tell me about your baby. Tell me about Thomas.”  I took my photo box wherever I went, in the hope that someone would want to share the photos of our son.
I hadn’t seen Doctor M. for some weeks because she’d passed my antenatal care onto a specialist. When I went to see her two weeks after Thomas’ birth about another matter, I wanted to tell her about our son. I had my Thomas box with me and I wanted to show her all the sad but beautiful photos. I wanted her to take an interest in our baby who had so recently died. The doctor didn’t immediately ask about Thomas. I thought maybe she wasn’t going to say anything but I was determined to show her all the evidence of his fleeting life. I think I wanted Doctor M. to suffer too. I wanted her to feel my pain, to leave her seemingly happy life even for a few minutes and join me in my sorrow.
I was upset the receptionist Jenny didn’t remember that our baby was probably going to die after birth. How could she have forgotten something that we’d thought about every minute of every day for the last few months? And so I wanted her to feel our pain too. I wanted her to cry even a few tears, to relieve me of a few of mine.
I didn’t weep with the doctor or the receptionist. Someone once remarked that we only cry with those people with whom we feel comfortable, those we feel truly care about us and our sorrow. Maybe this is true.
When I returned home it didn’t take long for the tears to appear again. I was back alone with my grief. The doctor had probably dried her eyes and was attending to another patient. I’d touched her with my sorrow for a few minutes but it was my pain, not hers.  She couldn’t really feel the depths of my suffering. No one can unless they have had a similar experience.
Grief is a very lonely existence.
But I found out that sharing experiences with other grief-stricken parents helped. We’ve all passed through that one way door of intense suffering. We all, without wanting to, belong to that exclusive club where the price of membership is so very high: the loss of a child. We all know the depths of the pain. And we all realise we are not alone. There is someone else who understands.
Please share my stories on my blog Sue Elvis Writes

Retreating from the Pain

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By Sue Elvis
From my diary:
23rd November
… This last week has been so miserable. Only a future without Thomas lies ahead… I’ve felt like retreating within myself…
Thomas died 11 ½ years ago after 28 hours of life. But losing Thomas wasn’t our first experience of grief.
 I had already lost four babies by miscarriage, one after the other in the space of about eighteen months, a few years earlier. So many cycles of hope and happiness and then sorrow, one after another. I was on an emotional roller coaster and I felt like I was going crazy.
After the 4th miscarriage, my sister arranged to visit me. I came home from the hospital knowing we would soon have a guest in our home. I felt I didn’t have time to deal with the grief. I couldn’t cry and express my sorrow when I had a visitor to look after. I decided I wouldn’t think about the grief. I would leave that until later when I was once again alone. I stepped back from the pain. I didn’t cry. I didn’t grieve. I didn’t feel anything.
My sister returned home but the time for grieving seemed to have passed. I had retreated so far away from my pain, I couldn’t get back. Life went on. I functioned. I survived. I thought I was quite all right. It didn’t really matter that I’d never cried a tear over my lost baby, did it?
And then one day I was at a mothers’ meeting talking to my best friend. Somehow the talking turned to arguing and a torrent of anger flowed out of me. My startled friend couldn’t understand why I was crying uncontrollably and getting very upset over a trivial matter. I gathered up my children and stormed out of the meeting to the great surprise of everyone.
The anger and tears were nothing to do with my friend. She just happened to be there when the dam burst and the grief I’d kept locked up inside me for so many weeks came flooding out. It was time to face the pain. I couldn’t avoid the grief any longer.
When Thomas died, there was a great temptation to withdraw within myself again, to retreat from the huge burden of sorrow that was bowing me down. I just wanted to get away both from the grief and myself.
But this time, I admitted to a friend how I was feeling; “It would be so easy just to draw back until I can no longer feel the pain.”
“But Sue if you withdraw from feelings of pain, you will withdraw from feeling anything. You will not experience moments of joy or happiness or hope. And it is these moments, however short, that will keep you going along that long and difficult pathway to healing. Yes, you will not feel pain. But you won’t feel anything good either. You will feel nothing.”
I cannot say I never retreated within myself while I was grieving for Thomas. There were moments when I no longer cared about the future. I just wanted to escape the present. But these times did not last long. I fought my way back each time.
I had to feel. I had to have hope. I wanted to survive.
Please share my stories at Sue Elvis Writes