Star and Paddington Bear

When we used to visit Granny she enjoyed reading bedtime stories with the children. For Christmas she often used to buy them books and the Paddington Bear series was a favourite.

Since Star joined our family two and a half years ago she also enjoys the adventures about the Bear from Peru. In this time, Star has learnt to do so much, Granny on the other hand has developed severe dementia and has had a rapid decline.

Over the course of just under a year Granny became unable to care for herself and now she lives in a nursing home. We have had the painful job of sorting through her house, possessions and selling the family home.

The lady we love is still physically there, she walks the corridors day and night, but the person has now virtually gone. She enjoys red flowers, she enjoys her puddings, but she no longer recognises her son and her grandchildren.

If it weren’t for the staff, visits there would feel very hopeless. Last weekend a theatre company visited the home to perform the pantomime of “Jack and the Beanstalk,” which happens to be Star’s favourite story.

Eddie took Star to watch the pantomine. On arrival Star asked the names of several other residents.

“What’s your name?” she said. And looked perplexed when people were unable to reply.

The carers responded “she doesn’t know, Star – but it is Betty.”

Star was engrossed in the pantomime and when Jack returned from market and his mother was asking what price he got for the cow, (and was trying to build the suspense)

Star shouted out

“Beans, it’s Beans”

This led to some unplanned extra audience participation as Jack tried to “shhh” Star which she loved! At the end Star had photos taken with the cast.

Later Star and Eddie went to find Granny, who was not able to enjoy the show, but for the first time in many months she sat with Eddie and Star and ate some sandwiches. The staff were over the moon to see Star and kept trying to give her seconds and thirds of chocolate pudding!

Then Granny got up and has is her custom started to walk the corridors again.

Most of us would find this very hard to handle. The smell, the calls from the other residents, the fact that Granny needs so much help and does not know our name.

But Star just got up, followed her Granny, took hold of her hand and started to walk the corridors with her.

When Eddie showed me the photos, we agreed that no one else brings such joy to this situation like Star does.

The next day we watched “Paddington” the movie as a family. Eddie and I were struck by the scene where Mrs Bird tells Mr Brown:

“The thing you don’t seem to realise is that this family needs that Bear as much as that Bear needs this family.”

Yesterday was exactly three years since I first saw Star’s face. A photo of a little girl, with Down syndrome with a mischievous grin and hair standing on end, sat on a trampoline. Her social worker had put her photo on that website  looking for adoptive family for her.

We were approved as adoptive parents looking for a child to join us. We felt God had asked us to offer a home and a family to a child who did not have one.

We hoped one day to be the family she needed.

We had not expected in return to receive such joy.

I sent a text to Eddie to remind him of this anniversary and he replied:

🙂 This family needs that Bear….

 

 

 

 

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“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

 

 

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 starts Ballet

Last week did not begin well.

I was called into class after school, to say that Star had been more tricky than at any point so far this academic year.

The teacher and I chatted for a while and I am sure that Star is triggered. I believe she recognises the changing day length and as we are approaching a difficult anniversary for her, she is worried that she is going to be removed again.

The result is a child who oscillates between defiance and (usually in the evening) a child who is clearly very, very scared.

Someone described it to me as believing she is going to be removed so pushing us as hard as she can, so that we will reject her -to just get the pain over with.

Like taking a deep breath and holding it, before jumping into cold water.

It is very, very hard.

A month ago we decided Star could start ballet and Hannah volunteered and had been accepted as a helper in Star’s class.

The ballet teacher has been so welcoming, she knows that Star has Down syndrome and she invited her to start ballet almost as soon as Star joined our family through adoption. The girls have been so excited that it felt wrong to stop this plan despite the difficulties of the last few weeks.

Last week Star went in to her first ever ballet class and the teacher said she spent a lot of time looking at herself in the mirror !!! The teacher thought she was getting used to being in the room.

This week, after 10 minutes or so, I was called in, and my heart sank.

The kind ballet teacher was concerned that Star wasn’t joining in and invited me to sit in and watch. (Hannah told me later that Star had been asking for me.)

And yes she was right, there were times Star was not joining in – I quickly realised that it was often when she knew she could not do what the rest of the class were doing.

However, once I was in the room, there were lots of times she did.

And I find myself amazed at how children develop. At how one instruction might require 5 or 6 skills in order to complete it and how most children just manage this.

And I can see just how many hurdles Star has to overcome.

For example the instruction: “Girls, walk in Demi- point.”

This assumes that:
the girls can hear this instruction
that they understand the need to continue walking in a circle,
that they continue to hold our their skirts,
that they understand that “Demi-point” means “tip toes”
and that they are able to do this without falling over.

Before this morning did I know what Demi-point was? – Nope.
Did Star know? – No.

Did she do it?
Yes.
Brilliantly.

She copied the rest of the class and walked around the studio beaming!

Did she manage every instruction in the class? – no.
Did she attempt most? yes.

As I watched her sat with the class trying to listen and clap out a rhythm or join in with a series of steps, (which at the moment is too hard for her), I could feel sad.

But I don’t.

She was there, included and happy.

At one point the girls were practicing jumping from first position, pointing their toes and landing in first position again. The older girls were helping the younger ones.

Around the room there were twenty little girls springing in the air, trying to land nicely, sometimes succeeding, sometimes wobbling, faces concentrating hard on what they were attempting.

In the centre were two sisters, completely focused on each other. One, aged nearly 9 demonstrating the move with skill and patience, the younger watching and attempting to copy.

I can honestly tell you that in that moment I was so proud of my two girls.

As I watch I realise that Hannah is translating the instructions perfectly to Star’s ability to understand, she is praising Star’s every attempt to try. She gives her one simple instruction to try to improve next time.

And Star, looking intently up at Hannah with a rapturous admiration for her big sister. Trying so hard to copy her movements.

First position, jump, point toes, land.
And again.
First position, jump, point toes, land.

Then they joined hands, facing each other, feet in first position and jumped together, smiling.

I realised, that my girls had just snatched victory from the jaws of defeat.