A Non-scare

“Fluff, what does ‘gullible’ mean?” Chip asks her big sister.

“It’s a swear word!” Fluff sounds shocked. “You mustn’t say it!”

Chip looks at her sister. “It isn’t.”

“It is!” Fluff is insistent, although she is smiling. Chip is unconvinced.

“Muuuum?”

“Hmm?” I look up.

“What does ‘gullible’ mean? Fluff says it’s a swear word.”

“It’s not swearing.” I pause. “There’s no such word, Chip.”

“Really? Fluff said it was a swear word!”

“No, it’s not a swear word.”

********

Two weeks later we are waiting in the hospital for me to see the breast specialist about a lump in my *breast. It is the same hospital in which we visited my dear mother-in-law before she died three weeks prior. Emotions hang raw in the air.

I am sitting with my new crochet project and Chip is quietly reading. She is, like her mother, addicted to stories.Suddenly she jumps up and runs over to me, her index finger against a word on the page.

“See, Mummy!” She cries, “It is a word!”

I look at the page to see what she is pointing at. I smile up at her and all of a sudden she gets it and looks at me with dismay, then disapproval and then amusement. There is a gleam in her eyes that I know means she is thinking of a way to get me back (the girls and I love jokes, but Daddy and Prince not so much, so we don’t play jokes on them). Prince wants to know what was funny and so I explain to him, several times, until he understands and grins. A difficult day becomes a little lighter.

*******

*It was just a large cyst, which was drained with an enormous needle. I am prone to them, apparently.

My word I was grateful that it was only a cyst! Not because we wouldn’t have somehow dealt with/struggled through any eventuality (because who has a choice in these things?), but because the last few months have been really hard. This non-cancer-scare actually felt like a bit of a turning point for me. It’s not just the grief of losing someone you love that can cause distress after the event, but the weeks leading up to death during which a loved one is suffering. I had become consumed by my mother-in-law’s suffering. I couldn’t bear to see her like that. I researched strokes and vascular dementia and end of life care, etc., etc., just to try to find some answers that would limit her intense distress. I came up with very little, to be honest. I just wanted to make her feel better. She was clearly distraught and in pain. I eventually realised that ‘the Lord gives and the Lord takes away’ and there was not one thing I could do about it either way, except be there for my husband, and pray. I don’t think I did a very good job of either.

Sometimes a non-scare can give you a bit of perspective.

On Autism, Family, Grief and Kindness

During the funeral for my mother-in-law last week, I made sure Prince stayed with me. I carefully explained exactly what would happen beforehand and although the girls went with my parents, Prince stayed by my side the whole time.

Prince is 17 years old and has autism. He goes to special school. He struggles with anxiety so was, of course, very worried about what the funeral would be like. I think he thought we’d all be wailing and moaning and falling over one another or something, because beforehand he was constantly asking me if it was ok that he was sad, but not very, very sad, and he was glad Grandma was not suffering any more (he didn’t word it like that but I think that’s what he meant). He also said, quite bluntly, that although he liked Grandma, he didn’t know her very well, so he wasn’t as sad as he would be if it was his other grandmother, whom he knows very well. Which is fair enough. I told him not to say that to anyone else, though!

To be honest, when we would take Grandma out (she lived in a lovely care home for the three years prior to her death) I was mostly thinking about how to manage her with her frailty and dementia (make sure she is not distressed or too tired, keep her upbeat and happy by talking to her and constantly reassuring her, even if I’ve already done exactly the same thing a dozen times or more), Prince and his autism (minimise anxiety, keep him passive), boisterous or bickering girls (make sure they’re not forgotten in the need to put Grandma and Prince’s needs first) and a husband who gets easily distracted and might not notice if his mum is about to topple over or something (keep an eye on him). This family time was lovely – my MIL was lovely – but could also be quite stressful, so encouraging anything other than quiet, non-anxious, absorbed-in-his-radios behaviour from Prince was never really the priority. I don’t mean to sound mean towards my husband. He had all the same things to deal with, along with my PTSD and CFS, so we have always had to look out for one another. My point is that I didn’t seek to encourage interaction between Prince and his grandma.

On the day of the funeral I made sure Prince was with me, to make sure he was ok. I didn’t want to risk my parents saying the wrong thing to him, however well-intentioned they may be. I sat in the pew first, followed by my son and then my husband. During his sister’s beautiful eulogy, Frank began to tear up and I saw him wiping his eyes and nose. I felt bad that I hadn’t sat in between them both, but I couldn’t move as that would distract from the eulogy. Then came my turn. I stood and walked to the front of the church and read a poem I had originally written after the death of Frank’s dad. As I came to sit back down, I deliberately sat in between Frank and Prince. I took Frank’s hand. He squeezed mine. The tears began to flow. I reached for the tissues and thanked God that I had kept it together until after my poem. Then, to my surprise, Prince took my hand in his. He didn’t say anything, but this little gesture from a young man for whom touch is anathema made me realise what a wonderful boy I have. That simple act of taking my hand meant so much to me that I can’t really describe it. You won’t know what that’s like unless you’re a parent of a child with autism yourself. Prince saw that mummy was sad and he wanted to make me feel better.

I love my boy. I love his innocence. You can take your neurotypical sons. I’m glad they have parents who love them. I’m glad they will have the chance to ‘succeed’ in life, to go to work and have a family of their own. But I wouldn’t change a hair on my boy’s head.

This is a large work I’ve called you into, but don’t be overwhelmed by it. It’s best to start small. Give a cool cup of water to someone who is thirsty, for instance. The smallest act of giving or receiving makes you a true apprentice. 

Matthew 10:42, The Message

I think my boy is a true apprentice, even if he doesn’t know it.

Auf Wiedersehen

The funeral for my mother-in-law went well. It is always a sad time, the farewell of a loved one, but for followers of Christ it’s a celebration, too, of the life the person lived, of the end of their final journey. When a woman devotes her life to serving God, to loving the unloved, the sendoff is always bittersweet.

God was there in the bright February skies, in the new-formed heads of tiny snowdrops lining the lanes. God was there in the musty old church, He was there in the coffin, in the pallbearers, in the tears and smiles of friends and family. It was a fitting tribute to a remarkable woman. I am so thankful to have known my MIL, to have been accepted as part of the family, and most of all for her very lovely son, my husband, who would not be the wonderful, kind, intelligent man he is today without his mother.

I imagine Jesus stretching out his hands in welcome and my MIL stretching out her hands with that big, warm smile on her face.

Jesus says, “You made it!” and MIL responds, in her wonderful regional accent, “I can’t believe it, I’m ‘ere! At last!” Behind Jesus she spots her husband, no longer old or infirm, but remade and whole and happy, and then she sees her parents, her sister, her friends… Hurrah! They all say. Welcome home!

So for us it’s not so much ‘goodbye’ as ‘auf wiedersehen’ – till we meet again.

Thank you, Jesus 🙂

Hope

640px-oedipus_at_colonus

Oedipus at Colonus by Harriet Fulchran-Jean (Wikipedia)

A man desperate for many years of life, not content to live a moderate span, is… obviously a fool, for many feelings stored by lengthy years evoke more pain than joy, but when we live beyond those years that are appropriate, then our delights are nowhere to be found. The same deliverer visits all of us, and when our fate from Hades comes at last, there is no music, dance or wedding song. No, only the finality of death. The finest of all possibilities is never to be born. 

~ from Oedipus at Colonus by Sophocles, 401BC,

translated by Ian Johnston

Love never ends… we know only in part, and we prophesy only in part; but when the complete comes, the partial will come to an end… For now we see in a mirror, dimly, but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known.

1 Corinthians 13:8-12 (NRSVA)

The last enemy to be destroyed is death… 

What is sown is perishable. What is raised is imperishable…

Where, O death, is your victory? Where, O death, is your sting?

…thanks be to God who gives us the victory through our Lord Jesus Christ.

1 Corinthians 15:26, 42, 55, 57

What comfort comes from the sureness of God’s merciful compassion! What hope from the knowledge of His love! What thanks we can raise when all suffering is ended, when, as the Salvationists say, our loved one is ‘promoted to glory’. We are sad because we will never take Grandma out for lunch again. We won’t share a cheeky grin. We won’t share the fresh joy of new-burst daffodils, or the pleasant cure-all of a ‘nice cup of tea’. But we know that –

…the home of God is among mortals.

He will dwell with them;

they will be his peoples,

and God himself will be with them;

he will wipe every tear from their eyes.

Death will be no more;

mourning and crying and pain will be no more…

Revelation 21:3 – 4

Blessed

Comfort, O comfort my people,

says your God.

Speak tenderly to Jerusalem,

and cry to her

that she has served her term,

that her penalty is paid,

that she has received from the LORD’s hand

double for all her sins.

A voice cries out:

“In the wilderness prepare the way of the LORD,

make straight in the desert a highway for our God.

Every valley shall be lifted up,

and every mountain and hill be made low;

the uneven ground shall become level,

and the rough places a plain.

Then the glory of the LORD shall be revealed,

and all people shall see it together,

for the mouth of the LORD has spoken.”

 

A voice says, “Cry out!”

And I said, “What shall I cry?”

All people are grass,

their constancy is like the flower of the field.

The grass withers, the flower fades;

when the breath of the LORD blows upon it;

surely the people are grass.

The grass withers, the flower fades;

but the word of our God will stand forever…

 

He will feed his flock like a shepherd;

he will gather the lambs in his arms,

and carry them in his bosom,

and gently lead the mother sheep. 

 

Who has measured the waters in the hollow of his hand

and marked off the heavens with a span,

enclosed the dust of the earth in a measure,

and weighed the mountains in scales

and the hills in a balance?

 

…Have you not known? Have you not heard?

Has it not been told you from the beginning?

Have you not understood from the foundations of the earth?

 

…Have you not known? Have you not heard?

The LORD is the everlasting God,

the Creator of the ends of the earth.

He does not faint or grow weary;

his understanding is unsearchable.

He gives power to the faint,

and strengthens the powerless.

Even youths will faint and grow weary,

and the young will fall exhausted;

but those who wait for the LORD shall renew their strength,

they shall mount up with wings like eagles,

they shall run and not be weary,

they shall walk and not faint.

Extracts from Isaiah 40 (NRSVA)

My dear mother-in-law died yesterday. We weren’t quick enough to the hospital to be with her, but Frank and I were able to see her, laid out in a private room with a sheet neatly placed over her body, just exposing her face. She was warm when I stroked her hair and said a burbled goodbye. I thanked her for being my mother-in-law and told her I was glad to know she was with Jesus. Later, when we were home, my sister-in-law visited and cuddled one of our newly acquired guinea pigs as we briefly discussed the next steps. Jesus said ‘Blessed are those who mourn for they shall be comforted’. I doubt he meant that guinea pigs would be part of the process, but I am quite sure God uses even the lowliest of creatures!

Please keep Frank and his sister in your prayers as they go about the funeral arrangements. Thank you.

Reblog: #worldwithoutdowns: A Challenge for Christians

My first thought when I heard about the new, safer pre-natal test for Downs was ‘thank God there’s no test for autism!’ Abortion of children with Downs is eugenics by the back door, in my opinion. I know there will be those who disagree. But I also know that we are firmly instructed ‘do NOT judge’ as well as ‘love one another, as I have loved you’ and the way He has loved is without boundaries. None of us is worthy of Christ’s love. So what do we do? I believe this post from Included by Grace makes some very pertinent points.

Then people began to bring babies to [Jesus] so that he could put his hands on them. But when the disciples noticed it, they frowned on them. But Jesus called them to him, and said, “You must let little children come to me, and you must never prevent their coming. The kingdom of God belongs to little children like these. I tell you, the man who will not accept the kingdom of God like a little child will never get into it at all.”

Luke 18:16-17 (Phillips)

NB I have not seen Sally Philips’ BBC documentary as we don’t have a television license. I did catch her on BBC Radio 4 the other morning, speaking about the programme, the Downs community, the current very high rate of abortion for those diagnosed with Downs before birth, and about her son, whom she clearly values as much as I do my own dear boy.

includedbygrace

I was going to write a ranty post about the implications of genetic screening (and it may still work out that way) but in the middle of composing it in my head, I got a message from a friend who is isolated from her church, her family and community because she is a single mother with a severely autistic child. Many Christians would talk about the value of life and speak up against abortion, but then sit in churches that exclude these ‘valuable lives’ because they are so inflexible and inaccessible to them. Changing things for the few is met with horror at the mere thought. So families and adults with disabilities are left out, excluded, not welcome.

Watch Sally Phillips documentary “World Without Downs”

I wanted to join in the throng of ‘all life is sacred’ with the many that have responded to Sally Phillip’s BBC documentary that I…

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