Stephanie's Hope

I've mentioned Bo Stern, whose husband has ALS/MND like me, before. I hope she won't mind my copying her latest blog post here. I know you'll appreciate it.

"Oh, I love this guest post by my sweet friend, Stephanie Nelson. Never let go of hope.

'Hope.

It was her middle name. 

All we knew was that she was on her way; we didn’t know her gender or her diagnosis yet.  One Sunday morning, our pastor preached about hope, defining it as “confident expectation.”  I leaned over and whispered to my husband that I liked it for a name if we have a girl.  He playfully rolled his eyes at me, standing firmly in his resolution not to discuss baby names until we find out the gender. 

But I tucked it deeply into my heart. 

It was tucked into her heart too.

Photo credit:
http://www.etsy.com/transaction/39221728

Evelyn Hope was born with so many congenital heart defects that at 12 days old, in the NICU of a prestigious research hospital, the doctors told us there was no hope for her and that we should let her go.

I knew where she was going and I knew I’d go there too someday.  I had days that were full of faith, but also days that were full of tears.  Sometimes the line between the two is very blurry, especially when your eyes are puffy, and brimming with a constant and thin veil of salty water that runs down your cheeks at all the moments you wish it wouldn’t.

The truth is I that I had never before really longed for Heaven.  It was a default option because I didn’t want to go to Hell.  I realize this isn’t very spiritual of me, but it’s true.  So much of grieving is learning when to hold on and when to let go.  Having – and losing – Evelyn was God’s gift to me so that I could place my hope in His promise of Heaven. 

Letting go of what I thought my life should be.

Holding this view of Heaven before me every day.

Heaven is where I will embrace her again, and spend endless days by her side worshipping Jesus together.  Knowing this gives me courage that I can greet every morning with faith, and rest in knowing that I am in His hands.  My trials and triumphs are hand-crafted by Him in order to bring me into a deeper relationship with Him.  Even when I want to call it quits in the midst of the dark days and even when I feel that sadness might rend my heart, I hold on to hope.  Knowing Christ more fully is worth the pain it might take to get there.  And spending eternity with Evelyn, compared to the breath that is this life, is just the icing on the cake. 

I did let Evelyn go.

But I will never let go of hope.' 

Stephanie Nelson is the author of “See You in a Breath,” and wife to Chris and mother to Clara and Jonathan. Her passions, in order are: Knowing Christ, loving her family and church, writing, reading, politics, and talking her friend’s ears off."

There's a lot I identify with in that, including her old default position on Heaven and hell! "Having - and losing - Evelyn was God's gift to me..." - that is some statement.

The communion of heaven

I've already mentioned The King's Blog which continues to encourage me. One of pieces under Words for the Journey comes from the letters of American writer, Flannery O'Connor, who suffered from lupus and died aged 38. The excerpt concluded with a prayer to St Raphael. I confess there was a time when praying to anyone but God would have made me bristle, being a sound Protestant. However I now think I was wrong, partly because I reckon I was fixated with the word "pray", which really just means "ask". I seem to remember some Shakespearian plays (such as The Taming of the Shrew using the expression "I pray you"). And I don't have any problem with asking other people, "the saints" to pray for me or being asked to pray for others. Now it seems illogical to believe in the reality of life after death, saints on earth and saints in heaven, and to exclude the latter from my conversations. (It might, of course, give rise to some misgivings as to my rationality on the part of some!)

However, for my many friends who might find the prayer problematic, I recommend simply addressing it to Jesus, who "always lives to make intercession" for us (Hebrews 7).

PRAYER TO ST RAPHAEL

O Raphael, lead us towards those we are waiting for, those who are waiting for us! Raphael, Angel of Happy Meetings, lead us by the hand towards those we are looking for! May all our movements, all their movements, be guided by your Light and transfigured by your Joy.

Angel Guide of Tobias, lay the request we now address to you at the feet of Him on whose unveiled Face you are privileged to gaze. Lonely and tired, crushed by the separations and sorrows of earth, we feel the need of calling to you and of pleading for the protection of your wings, so that we may not be as strangers in the Province of Joy, all ignorant of the concerns of our country.

Remember the weak, you who are strong–you whose home lies beyond the region of thunder, in a land that is always peaceful, always serene, and bright with the resplendent glory of God. Amen.

Tea with tears

David Thomas (centre)

Yesterday a group of us with MND and our families were invited for tea at the Kingswell near Harwell. It was a good time. Four of us were in wheelchairs, and there was Lorraine's new grandson, Max, just a few days old. The one person whom we all missed was our friend, David Thomas. I refer to him in the Diary of a Donkeybody blog as "the herb gardener" because he used to joke about having left his cannabis farm for the afternoon! He died last Thursday at his home. Everyone would comment on his spark and his wit and sense of fun. He was also very brave. The disease affected him severely and rapidly. My picture shows him at a meeting in May last year.

He went to Sandhurst and served in the Royal Artillery. He was a crack shot and had been chairman of the British Pistol Club. Last year despite his illness he completed an MA in First World War Studies at Birmingham, writing a unique dissertation:

He took great pleasure in seeing the weddings of both his daughter last year and his son this year. We all felt his absence as we shared our tea. Because he was above all a lovely man and he and wife Penny an inspiring couple. A mutual friend wrote this morning: "I will never forget his wit and cheeky sparkle. MND is such a cruel disease :( " I have to say her mother, who has it too, is a pretty sparkly lady also. Which is quite something as we're all aware, to one degree or another, of the limit to the Christmases we'll live to enjoy with our families.

Perhaps that's the reason too why none of us was in a hurry to leave that friendly room, where we were able to share, either with laboured speech or via speaking device, with others who just understood and people who cared.

It was dusk as we left and the Friday traffic from Reading was already streaming past. Then it was time for supper and relaxing by the tv. I'd recorded Rev. from the night before, to which I have ambivalent feelings. This episode I thought was well done. There's a brilliant new teacher at the church school of which the Rev is chair of governors. However he's an articulate lapsed Catholic atheist. The head loves him; the vicar loathes him. On the day of the religious inspection Mr Feld is late. In fact he's been knocked off his bike and is dead. The Rev has to give the assembly. He begins, "It's very difficult to know what to say at times like this. We won't be seeing Mr Feld again here, because Matthew's gone somewhere else now. Matthew didn't believe in Heaven, but I do. I don't know what it is, but I do know a story that gives me an idea. It's a story about a lot of little bugs that lived at the bottom of a river. And every now and then one of the little bugs would crawl up a stem through the water, up into the light - and would never be seen again...."

Waterbugs and Dragonflies 

It's not an original story. In fact I used to keep a copy to explain death to bereaved children. The point of the story is that the "bug" turns into a beautiful dragonfly able to fly, but can't reassure the bugs he's left behind because he can't ever get back there. This upset him "until he remembered that all his friends one day would climb up the stems and join him in the sun."

It's clearly not a story for adults. It's a very simple version of the truth, which of course the children (and we) can take or leave. I would say that the metamorphosis is not automatic, but it's certainly God's offer and desire that we should exchange our bodies for a superior model, which won't have the weakness, disease and frustration we now experience and which won't ever wear out. I'd say the picture of nymph and dragonfly is not a bad analogy, except eternity's longer than a month! There's a verse somewhere which talks about the good things that pass our understanding which God has prepared for those who love him.

You're not junk!

This is a post that appeared in today's iBenedictine Nuns' blog. I think it's so good I'm just going to paste it here. I love the sentence, "that, by and large, I stick with being me, trusting that God doesn't make junk and sees something wonderful in each one of us, even me." Amen, sister! 


That's such an important truth in a society which still rejects people with disabilities (even to the extent of aborting them before they see the light of day. I was moved to read Peter Saunders' piece about a mum's bitter regrets at being persuaded to have her Down's baby aborted). God doesn't make junk. We may feel over-the-hill and useless - and yet, think about it, if I were merely a car, I'd be a valuable veteran, getting on for vintage, by now. And visitors would be brought to the garage where I was kept and would say, admiringly, "I must say he looks well, considering." The fact I could only be taken out on a trailer wouldn't matter. Of how much more value are even the most decrepit human crocks! Surely our Heavenly Father cares for us!

On Being Oneself

by Digitalnun on November 12, 2011

A few weeks ago, when I posted some thoughts about online engagement, my friend Tim Hutchings very sensibly asked whether some of my suggestions didn’t cancel themselves out, making us less ‘ourselves’ online than we are offline. I think the specific question he raised was addressed in the comments, but there is a bigger question that concerns all of us, whether we go online or not. How can we be ourselves in a world that, by and large, is always pressuring us to be something other than we are? The world of advertising wants us to be thinner, richer, more ‘stylish’ than most of us could ever dream of being (i.e to buy what it is selling). The world of Church wants us to be . . . what exactly?

I often ask myself what the homilist thinks he is doing (in the Catholic Church, the sermon is always preached by a priest or deacon, who must be male). Do the admonitions to be more prayerful, more generous, more this or that really affect us? When I’m exhorted to act in a certain way ‘because you are a nun’, does it ever change me? I have to say that, by and large, I stick with being me, trusting that God doesn’t make junk and sees something incomparably wonderful in each one of us, even me. That isn’t a pretext for not trying to be more prayerful, generous, etc (see above), I think it is to recognize a fundamental truth: we go to heaven, if we go at all, as ourselves — smudged with sin, only half-understanding, full of contradictions, the person God created and redeemed. Being oneself is ultimately the only way in which to give God glory.

Help, I need somebody's help

Last week I had a dream which left me thinking about death - not in a morbid way, more about our relationship with those who have died. I wrote to my friend Elizabeth to ask what she thought. Part of her reply was: "And as for the Community of Saints; well....I suppose it is a notion to which I have increasingly warmed, in that it involves our sharing across time and space with those striving for holiness and the life of the spirit, past, present and future....  It provides a sense of solidarity of prayer, purpose and companionship with those who are preparing the way by going before us on the journey of life and death."

© Jane Wenham 2012

I must say I don't see the logic in asking living saints to pray for us and our concerns, and not those who are no longer with us but "with the Lord". That's not the same as being an intermediary between us and God, of whom there's only one (1 Timothy 2.5). But sometimes, it's true, it helps when others support us in prayer; sometimes we run out of words, or energy, or the will to keep on praying. We need others to stand alongside us. That, I guess, is one reason why Jesus invented the Church, which in one old prayer is described as "the Church militant here in earth" as well as triumphant in heaven. I wonder whether some of us limit our vision in a way the Bible doesn't; whether we're just too earthbound. Is the boundary between here and hereafter as impenetrable as all that? And that's what the writer to the Hebrews implies when he talks about us being "surrounded by so great a cloud of witnesses", isn't it?


When I was writing about dying and heaven for I Choose Everything, I searched high and low for a story I'd heard which I thought came from Henri Nouwen, the Dutch priest and writer. It was to do with the process of dying. I never found it. Until recently I heard it referred to again - and tracked it down. It's a conversation between twins in the womb. Here it is:

The sister said to the brother, "I believe there is life after birth." 

Her brother protested vehemently, "No, no, this is all there is. This is a dark and cozy place, and we have nothing else to do but to cling to the cord that feeds us." 

The little girl insisted, "There must be something more than this dark place. There must be something else, a place with light where there is freedom to move." Still, she could not convince her twin brother.

After some silence, the sister said hesitantly, "I have something else to say, and I'm afraid you won't believe that, either, but I think there is a mother." 

Her brother became furious. "A mother!" he shouted. "What are you talking about? I have never seen a mother, and neither have you. Who put that idea in your head? As I told you, this place is all we have. Why do you always want more? This is not such a bad place, after all. We have all we need, so let's be content."

The sister was quite overwhelmed by her brother's response and for a while didn't dare say anything more. But she couldn't let go of her thoughts, and since she had only her twin brother to speak to, she finally said, "Don't you feel these squeezes every once in a while? They're quite unpleasant and sometimes even painful." 

"Yes," he answered. "What's special about that?" 

"Well," the sister said, "I think that these squeezes are there to get us ready for another place, much more beautiful than this, where we will see our mother face-to-face. Don't you think that's exciting?"

The brother didn't answer. He was fed up with the foolish talk of his sister and felt that the best thing would be simply to ignore her and hope that she would leave him alone.

Henri Nouwen, Our Greatest Gift: A Meditation on Dying and Caring (Harper: SanFrancisco, 1994), pp. 19-20.

There's a lot I love about the analogy: the simple parallel between being born and dying, the recognition of the painfulness of dying, the womb-like limitation of our perspective, and the excitement of "another place, much more beautiful than this, where we will see our mother (the one who's carried us and cared for us) face-to-face".