“I Grew in your Heart”

Last night Star and I were reading one of my favourite books. Taken from Psalm 139 and beautifully illustrated, it talks of God’s intimate knowledge of us from before we were born.

It starts “Jesus, you know me so well, you see my heart,”

which is comforting when you have a child born with a heart defect who won’t lie still enough for a clear picture on her ECHO scan!

“You made every part of me and watched as I grew in my Mummy’s tummy.”

How wonderful to think that God made every part of us. He made every part of Star. Her extra copy of chromosome 21 was not a surprise to her maker. This verse can also be translated “you knit me together in my mother’s womb”, I once read that as children with Down syndrome have an extra chromosome in every cell, that God did a whole lot of extra knitting to make them.

“And watched me as I grew in my mummy’s tummy”

This verse brings me pain and comfort. God watched as Star grew in the womb of a lady who could not meet her needs. Star lived in a family which at times was scary and unpredictable.

And God watched.

And God watched.

And Star was afraid.

And one day the authorities who, had also been watching, had enough evidence to act.

“You will always watch over me. Each day I live is written in your book.”

And Star was removed to safety, and some time later, Star came to live with us. As we look back we see the hand of God, the one who made the stars as well as the tiny babies, in every decision that brought us to where we are now.

What a comfort to know, that he has every day, and all of our tomorrows, written in his book.

“You made every part of me and watched as I grew in my Mummy’s tummy.”

Mummy,” said Star, interrupting me as I read and pointing at the picture of the pregnant lady embracing her son:

“I grew in your heart.”

 

 

Photo and words taken from “Alwats Near me” by Susie Poole

Based on Psalm 139, The Bible 

Published by Pupfish

 

 

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When I am Bigger..

Permanence. It is a word we think about a lot as a Forever family.

Recently we watched “Annie” and the line where Miss Hannigan tells Annie:

“You only live here because I get $157 dollars a week” hit us hard.

Our youngest daughter lived in a foster home where the foster carer told me that she would be ringing the office the day after Star left for another child to be placed, because she needed two children in placement at all times to pay the bills.

It nearly broke my heart.

We have tried hard to hide from our older children our belief that Star’s needs were not always met in foster care. We always speak about her foster carer politely. But they have noticed that no birthday or Christmas cards arrive for Star. They do not know that she was shut it a room for 13 hours at night, unable to get out. That she was called a “little b*tch” by one of her respite foster carers. After she moved to our house and was taught to sign , her social worker visited and told us she was a like a different child.

Clearly our attempts to protect Hannah and Ben from this have failed. Hannah was watching a TV programme on CBBC and I asked her what it was about

“it is about children who are like Star used to be – and where they live.”

The program is called “The Dumping ground.”

I wanted to weep. Hannah knows many amazing Foster carers, she knows of their love and commitment to the children in their care however long or short their stay, however challenging their behaviour. She also senses that this was not the case for her sister Star.

For a child like Star, who has known several homes, several respite placements and a number of sudden moves – developing “permanence” – the belief that you belong is a scary process.

“What if I trust these people, love these people and then I move again?”

Typically you have to live in one family for more than the total time you lived elsewhere to believe that this family is forever. So if a child joins their Forever family at 5, they would need to live there until they are 10 before they are likely to believe it is Forever.

For Star we still have 18 months to go before this milestone.

In recent months Star has grown taller. Hannah and Ben are also growing up and able to be more independent. Like all younger siblings Star wants to join in with this and we have had a number of conversations which result in “when you are bigger, Star.”

Cue – sad face.

Star recently stayed with her Grandparents while I was at work. When I got back she sat on my lap in the kitchen and I tickled her and said:

“Have you got bigger while Mummy was at work?”

She giggled and said “yes.”

“Have you been eating, and playing and sleeping and growing?”

Now she was properly laughing:

“Yes, I Bigger and Bigger!” (With Makaton signs for growing taller.) She continued:

“Mum, when I big, I open cupboard (pointing at our treat cupboard – which is currently out of her reach), I get chocolate macaroon and eat it up!”

Star now dissolved in giggles at the thought of being able to reach the treat cupboard and eat the contents unaided!

It wasn’t until a few minutes later , it struck me what she was telling me

that when she is big

she will live in this house

with that treat cupboard

there will be chocolate macaroons inside

and (although she is not meant to)

she will open that door and eat them.

And my name is no longer “Mummy” it is

Mum.”

 

 

 

 

 

 

Power and Glory

When we put our children to bed, we read and then we pray. Star likes to go first. She thanks God for the things she enjoys, her friends, her dinner, her cuddly toys and says a big “AMEN.”

This was until a couple of weeks ago.

Now her evening prayer goes like this.

Thank you God for good walking feet. Thank you God not afraid. Thank you God Mummy, Daddy, Hannah, Ben, Rusty (cuddly dog), Grace (school friend), ham sandwich, the power, and the glory all yours, now and forever AMEN.

 

Maybe like me you feel heavy hearted tonight at the election result. Maybe you feel uncertain for the future of our country. As you bring the events of your day and this week to our Heavenly Father, I pray that like our lovely Star, he would give you peace to say, here is my day Lord, thank you for it, I am not afraid, for the power and the glory are yours, now and FOREVER, Amen

Hope in the Valley

We have been walking through a valley.

Not the valley of the shadow of death, the valley of the shadow of trauma.
Star recognises the changing length of day and as all her big moves have occurred in spring, this is a season full of difficult memories for her.

Her body is telling her that Spring is the time to move again.

We have been trying everything we can think of to demonstrate that she is safe, that she is staying, that our family is forever family and that she stays here.

But like rain falling on impenetrable ground, the truth is not sinking in.
And so with her fear comes regression,

screaming in the evening – wide eyed and terrified,

Saying “NO” to everything

Running off in school, and outside of school.

The teachers, her one to one, the speech and language therapists are at a loss. I sat in an uncomfortable school meeting as they described her behaviour in school. And I could feel the tension in the room.

The staff don’t know what to do next.” I thought.

Eddie and I talked it over. We prayed, lots of people prayed, and a new plan was devised and agreed on for school.

Last week we seemed to be turning the corner.

At the end of our valley was a light. That light is a family Christian conference with members of our church. A few days where we can go away from normal life. Where there is space for bible teaching, for worship with hundreds of others, time to have tea and cakes with our good friends. Time to watch my children grow spiritually and in relationship with the young adults from church, who are family to them.

The man organising Star’s children’s program rang and has someone who is experienced with children with Down’s and they are looking forward to meeting her.

After an exceptionally busy week at work clearing my desk to go away and a 350 mile round trip to meet my new niece. We were nearly ready to go.

And then Star woke up with Chicken pox.

Infectious for the whole period of the holiday, so therefore not allowed on site.

Eddie will take our older two, I will stay home with Star, if she is well enough he and I may swap half way through the week.

I am gutted.

I have asked God how I can keep giving, without being filled?

How I can keeping going without resting?
Why had he allowed this to happen, today, to her. Didn’t he know how much I was doing, didn’t he owe me this one..?

And I cried a lot. Because I am tired, because I will miss my friends. Because I wonder if God is saying “she is not ready.”
And I realise that the bible is true when it says the heart is deceitful above all other things:
Deep down I still act like I can earn God’s favour.

Like God has a heavenly score board where I say “I do this for you, so you do this for me.”

In everyone else’s life I can see this is wrong, ludicrous even.

God has done everything so that I can have a relationship with him, all I bring to the transaction is my sin.

I know that life this side of eternity is not always fair.

I know there are much worse things than missing time and fellowship with my friends due to chicken pox.

Last week at the end of a thirteen hour work day, I went to visit a man, a believer, who had been promoted to glory. My job was to confirm he had died. As I stood listening for the heart beat that was no longer there, as I shone my torch into eyes that no longer responded to light, I thought about hope.

I hugged his wife and confirmed he had died. She asked me if I would disconnect the syringe driver with his pain medication in,
“because he does not need that anymore.” she said.
As I peeled away the dressing and carefully removed the syringe I silently agreed with her.

He does not need that anymore, where he has gone there is no need for morphine for pain, or midazolam, for distress for levomepromazine for nausea.
Because where he has gone there is no more pain, tears or sickness or death.
That is God’s great promise for me and for Star.

One day we will finally exit the valley and Star’s fear and pain will be washed away. She will see her Heavenly Father face to face and he will wipe away the tears from her eyes.

On that day, the longing to be with God and to be with his people, will be permanently fulfilled.

Nothing can prevent that day, the gathering of God’s great redeemed forever family.

Revelation 7:13-17 NIV
[13] Then one of the elders asked me, “These in white robes—who are they, and where did they come from?” [14] I answered, “Sir, you know.” And he said, “These are they who have come out of the great tribulation; they have washed their robes and made them whites in the blood of the Lamb. [15] Therefore, “they are before the throne of God and serve him day and night in his temple; and he who sits on the throne will shelter them with his presence. [16] ‘Never again will they hunger; never again will they thirst. The sun will not beat down on them,’ nor any scorching heat. [17] For the Lamb at the center of the throne will be their shepherd; ‘he will lead them to springs of living water.’ ‘And God will wipe away every tear from their eyes.’ ”

Star and the London Bus

Star was very excited to be visiting my brother and his wife in London.

Despite growing up in suburbia I have never driven through central London, we always use the train and tube instead.
So we set off one chilly December morning, with our warm coats, hat, gloves and a backpack full of Christmas presents. For the hour and a half long journey to “Uncle Robin’s.”

“Oh that will be so exciting for the children,” said lots of our friends.

And it was exciting.

Public transport is also fairly challenging if a you a child who struggles with transitions.

We spend a lot of our lives thinking about, planning for and dealing with transitions.

On some days, literally

every

single

one.

Going to the toilet, washing hands, clothes off, clothes on, slippers on, slippers off, shoes on. Eating breakfast, drinking juice, finishing breakfast.

On the days when I do the morning school run and then go straight into work I feel like I have done a full day by 9.15am!

We try to use lots of strategies: “now, next” boards, signing, encouragement, giving Star a choice where possible, but there are some days when nothing seems to work.
At school, they have similar issues. And it was strangely therapeutic for us to hear experienced teachers tell us how they had used all the strategies from the professionals (the Ed psych, the SALT, the SENCO) to no avail.

We were sat at parents evening to be told of a morning when Star would not stop playing with the mud kitchen.

For forty-five minutes she had been happily scooping mud from one ladle to other and she didn’t want to stop.

Her Teaching assistant tried everything.

The sand timer.

The now and next board.

Signing “finished.”

Then the teacher was called

And then, Headteacher was called out of a meeting.

She came in her high heels down to the reception playground, to tell our daughter it was time to stop playing with the mud.

And what do you think Star did ?

Completely ignored her.

Another day at school, another transition. She was asked to do something she didn’t want to. So she ran into the toilets, locked the door went under the cubicle to the next stall, locked it too, sat in the far corner and LAUGHED at the teacher.  [It is a mark of how much Star has changed me that instead of being completely mortified by this defiance, I thought – that is actually really clever. She had managed to get the only place in the reception classrooms where they could not reach her.]

So I think you can imagine why, with some trepidation, we set off on our journey of one overground train, two underground trains and half a mile walk.

On the whole Star did pretty well.

On our way home, we decided to board a double-decker bus for three stops to save the children’s legs from more walking. They were so excited to climb to the top and watch the hustle and bustle of Islington High Street below them.

We tried to prepare Star that we needed to get off soon.

But predictably, it was far too short a trip on the top deck for her.

Some of us had made it to the pavement, when the bus driver was about to pull off with an unhappy Star and Eddie still on the top deck. My sister-in-law alerted the driver to wait and Star was told us with some urgency

“We need to get off now, Star.”

At which point she turned around and addressed all the passengers of the top deck of the bus

Off NOW”

 

A Tale of Two Nativities

Two years ago, our son Ben was cast as Joseph for the reception class school nativity. The two weeks beforehand were incredibly nerve-racking. Little Ben would come home from school crying that he didn’t want to be Joseph.

He wanted to be a sheep. I spoke to his teacher and she assured me that he was really enjoying rehearsals and knew all of his lines.

But at home the tears continued. The lines were rehearsed the costume was bought, Ben agreed to be Joseph and then changed his mind, then agreed again.

He was so nervous on the morning of the dress rehearsal that they allowed me to come into to school to watch him.

He was fabulous.

Mary was played by a four-year-old who did a brilliant impression of a stroppy pregnant teenager, complaining, “But I am tired do we have to go?”

In came Ben right on cue:

“I’m sorry Mary but we do, our little donkey will carry you.”

On the night of the main performance I arrived a little distracted. I had checked my phone every five minutes all day, as I was desperately hoping to be called by a social worker, regarding a little girl with Down Syndrome who needed a forever family. Her name was Star, I had seen her picture and spoken to her social worker, who had seemed so enthusiastic, but then had not called back.

As I sat in the chair waiting for the performance to start, I wondered where Star was, who was looking after her and where she would be this time next year.

4 months later, Star came home to us.

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