It's an uphill struggle. Fortunately, the advantage of being three
is that you don't much care what you look like!
Just as well really.Tia
Tuesday, 4 November 2008
Snip
The disadvantage of being three is that your mother cuts your hair.
It's an uphill struggle.
Fortunately, the advantage of being three
is that you don't much care what you look like!
Just as well really.
Tia
It's an uphill struggle. Fortunately, the advantage of being three
is that you don't much care what you look like!Just as well really.Tia
Monday, 3 November 2008
Cry Freedom?
The moment I've been waiting for.
The school bus pulled up, both girls shouted in excitement and we loaded them in.
I turned around and walked back inside my empty house.
The floors are clear, the washing up's done, the shopping is put away and I've had breakfast.
So now what?
There's a silence where there should be little voices, even if those little voices have had me longing for silence all week.
Tia
The school bus pulled up, both girls shouted in excitement and we loaded them in.
I turned around and walked back inside my empty house.
The floors are clear, the washing up's done, the shopping is put away and I've had breakfast.
So now what?
There's a silence where there should be little voices, even if those little voices have had me longing for silence all week.
Tia
Hands
More of Little Fish's photography. I love the composition of this one.Little Fish's hands are themselves a bit of a miracle - the neurosurgeon didn't think she'd be able to use them to the extent that she does. As it is, apart from the minor problem of clicky thumbs, she has normal use of her hands. It's about the only bit of her body which does work normally - hands and arms. And with the use of them, she can do just about anything. She can't quite transfer herself into her wheelchair yet (although she can bump herself out of it now), but once she's in, she's away.
It's amazing really. The nerve damage from her myelomeningocele, if that had been any higher up it could have affected her hands - certainly the surgeon thought it would. And the Chiari Malformation, if that had been any bigger, that would have affected her hands too. As it is, she has problems with everything from her head to her lungs working down, and problems with everything from her toes to her stomach, working up. But somehow her hands and arms were unaffected.
It probably doesn't sound like much of a miracle to anyone else - after all, her legs are still these useless floppy things which dangle around and get in the way and get damaged and torn on a regular basis. And there's the minor inconvenience of having to cart a ventilator around whenever we go away. But there is such freedom in those arms, the promise of independence.
As miracles go, we'll take it.
Tia
Sunday, 2 November 2008
I believe
Someone on one of the boards I spend far too much time reading visit asked
"I'm just wondering how you reconcile your faith with your childs disabilities? ... I'd love to take solace from religion but find it so hard to reconcile [my child]'s suffering and the adverse effect it has had on us all as a family, with the thought of a caring God. "
I replied there, but thought I'd post it here too - I know some of you reading have different views and I'd be interested to hear all of them.
Forgive my faulty theology, but this is what I believe.
God loves us, and he gives us, all of us, free will. He does not step in to prevent the consequences of free will - if he did, then it wouldn't truly be free will. We therefore have the choice to do the right thing or a myriad of wrong things. I have the choice to hit my child or not to hit my child, to drive at 29 miles an hour or at 129 miles an hour, to drink myself into oblivion or to remain reasonably sober.
If I hit my child, and hit my child hard and repeatedly, that child is going to become damaged - if I throw my child against a wall, that child is going to be damaged, and if I constantly hit that child with harsh words, that child is going to be damaged. That damage will not be caused by God, but directly caused by me and I will have to answer for that one day.
If I drive at 129 miles an hour past a school, and a small child runs out, and I knock them down, that child will be dead or disabled again directly as a result of my actions, it will be my fault.
And if I drink myself into oblivion and fail to notice my child choking on a peanut in the next room, I will be responsible for that.
What has God to do with that? Well, He gave me free will in the first place, so I suppose we could blame Him for that. But if He takes away that free will, he also takes away my ability to choose the right thing. By preventing me from doing the wrong thing, I do not choose to do the right thing, I am forced to do it. And I don't think God wants slaves, robots, automatons. He wants people to choose to love Him and live His ways. Perhaps He was wrong there - but I know I'd rather live in a world which has everyone here in it rather than a world of Stepford Wives.
So, for disabilities which occur as a result of other people's actions, I don't see that as incompatible with a loving God at all.
I don't understand congenital disabilities. I don't understand why children can be born with some kind of faulty off switch causing them to fail and flounder and suffer and fade away and then die whether slowly and painfully or within minutes of birth. I don't understand why cancer. And I certainly don't understand why my daughter was boiled to death.
I'm sure some of it can be explained by the choices we make and the choices generations past made - toxic chemicals in the environment, radiation, and all the rest of it. But that doesn't explain all of it.
I just cling to the fact that we live in a broken, imperfect world. Whether you take Adam and Eve as fact or allegory, I believe our actions globally have caused this global imperfection. I believe that we collectively are to blame, not specific individuals and not God.
I definitely do not believe that God causes children to become disabled. I absolutely reject the idea that disability in a child is a punishment for the parent. And I am completely, one hundred percent certain, that for every tear I shed over my children, Jesus is right there weeping alongside me.
I don't always feel terribly close to God. I'm certainly not always happy with the things going on in my life and in the lives of those around me. I can't understand why God allows truly dreadful things to happen.
But - I trust God. I love God. I have a relationship with a loving Creator; He made me just as I am (although there's quite a bit of work to do; I'm a long way off perfect!), and He made my girls too.
Psalm 130 sums things up for me -
1 O LORD, you have searched me
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 You hem me in—behind and before;
you have laid your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, [a] you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me
and the light become night around me,"
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
God knew me and loved me before I was born. He knows my past (and forgives it), He knows my present, and He knows my future. He knows how many days my life holds and he knows how many days there are left for my girls too. He has a plan, and I am part of it.
I don't understand it, I can't understand it. But God can and does. And so all I have to do is trust in God. All I have to do is concentrate on what's happening today, now, this minute.
When I celebrate, I'm sure God is smiling too. And I know that God weeps at the tragedy in life - I know this because I've heard Him.
When the worst comes, all I can do is hold onto God. There's a song, my current favourite, by Matt Redman.
Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
It's a choice, ultimately. Even when I don't feel particularly close to God I choose to trust in Him. I choose to accept His plan for my life, His wisdom over my own foolishness. And every time, every time, I choose God instead of me then that relationship grows and strengthens.
Tia
"I'm just wondering how you reconcile your faith with your childs disabilities? ... I'd love to take solace from religion but find it so hard to reconcile [my child]'s suffering and the adverse effect it has had on us all as a family, with the thought of a caring God. "
I replied there, but thought I'd post it here too - I know some of you reading have different views and I'd be interested to hear all of them.
Forgive my faulty theology, but this is what I believe.
God loves us, and he gives us, all of us, free will. He does not step in to prevent the consequences of free will - if he did, then it wouldn't truly be free will. We therefore have the choice to do the right thing or a myriad of wrong things. I have the choice to hit my child or not to hit my child, to drive at 29 miles an hour or at 129 miles an hour, to drink myself into oblivion or to remain reasonably sober.
If I hit my child, and hit my child hard and repeatedly, that child is going to become damaged - if I throw my child against a wall, that child is going to be damaged, and if I constantly hit that child with harsh words, that child is going to be damaged. That damage will not be caused by God, but directly caused by me and I will have to answer for that one day.
If I drive at 129 miles an hour past a school, and a small child runs out, and I knock them down, that child will be dead or disabled again directly as a result of my actions, it will be my fault.
And if I drink myself into oblivion and fail to notice my child choking on a peanut in the next room, I will be responsible for that.
What has God to do with that? Well, He gave me free will in the first place, so I suppose we could blame Him for that. But if He takes away that free will, he also takes away my ability to choose the right thing. By preventing me from doing the wrong thing, I do not choose to do the right thing, I am forced to do it. And I don't think God wants slaves, robots, automatons. He wants people to choose to love Him and live His ways. Perhaps He was wrong there - but I know I'd rather live in a world which has everyone here in it rather than a world of Stepford Wives.
So, for disabilities which occur as a result of other people's actions, I don't see that as incompatible with a loving God at all.
I don't understand congenital disabilities. I don't understand why children can be born with some kind of faulty off switch causing them to fail and flounder and suffer and fade away and then die whether slowly and painfully or within minutes of birth. I don't understand why cancer. And I certainly don't understand why my daughter was boiled to death.
I'm sure some of it can be explained by the choices we make and the choices generations past made - toxic chemicals in the environment, radiation, and all the rest of it. But that doesn't explain all of it.
I just cling to the fact that we live in a broken, imperfect world. Whether you take Adam and Eve as fact or allegory, I believe our actions globally have caused this global imperfection. I believe that we collectively are to blame, not specific individuals and not God.
I definitely do not believe that God causes children to become disabled. I absolutely reject the idea that disability in a child is a punishment for the parent. And I am completely, one hundred percent certain, that for every tear I shed over my children, Jesus is right there weeping alongside me.
I don't always feel terribly close to God. I'm certainly not always happy with the things going on in my life and in the lives of those around me. I can't understand why God allows truly dreadful things to happen.
But - I trust God. I love God. I have a relationship with a loving Creator; He made me just as I am (although there's quite a bit of work to do; I'm a long way off perfect!), and He made my girls too.
Psalm 130 sums things up for me -
1 O LORD, you have searched me
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you know it completely, O LORD.
5 You hem me in—behind and before;
you have laid your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, [a] you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me
and the light become night around me,"
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
God knew me and loved me before I was born. He knows my past (and forgives it), He knows my present, and He knows my future. He knows how many days my life holds and he knows how many days there are left for my girls too. He has a plan, and I am part of it.
I don't understand it, I can't understand it. But God can and does. And so all I have to do is trust in God. All I have to do is concentrate on what's happening today, now, this minute.
When I celebrate, I'm sure God is smiling too. And I know that God weeps at the tragedy in life - I know this because I've heard Him.
When the worst comes, all I can do is hold onto God. There's a song, my current favourite, by Matt Redman.
Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
It's a choice, ultimately. Even when I don't feel particularly close to God I choose to trust in Him. I choose to accept His plan for my life, His wisdom over my own foolishness. And every time, every time, I choose God instead of me then that relationship grows and strengthens.
Tia
Saturday, 1 November 2008
I am officially a cantankerous old woman.
So, yesterday we had a doctor's appointment. Standard cold weather practice - waiting room full of coughs and sneezes, too many patients, too little space, no one desperately ill (ourselves included), but lots of misery being spread about.
It's a fairly large practice with a fair few doctors. And the nurses were busy doing a 'flu clinic on top. Lots of elderly patients with zimmer frames and walking sticks. Lots of chesty children flaking out on their parents. Toddlers accompanying sick parents bouncing off the walls a bit and babies dribbling on the floor.
So who on earth decided it would be appropriate to let their child bring their scooter in? And not just bring it in, but ride it around, up and down the corridors and around all the piles of poorly patients?
There's a large pram bay just inside the main door where you can park these things.
I was busy getting outrageously indignant about it, when I realised that I had officially turned into my grandmother.
Oops.
Pass me that walking stick so I can stick it between her spokes and send her flying and let me wear something purple.
Tia
It's a fairly large practice with a fair few doctors. And the nurses were busy doing a 'flu clinic on top. Lots of elderly patients with zimmer frames and walking sticks. Lots of chesty children flaking out on their parents. Toddlers accompanying sick parents bouncing off the walls a bit and babies dribbling on the floor.
So who on earth decided it would be appropriate to let their child bring their scooter in? And not just bring it in, but ride it around, up and down the corridors and around all the piles of poorly patients?
There's a large pram bay just inside the main door where you can park these things.I was busy getting outrageously indignant about it, when I realised that I had officially turned into my grandmother.
Oops.
Pass me that walking stick
Tia
Friday, 31 October 2008
Perfect Moments
The light outside is fading, it is cold and windy. Inside, the house has been made shiny and clean during our absence this morning. A Matt Redman CD playing. I sit on the settee, one small ginger cat purring quietly into my ear, and a small super-soft grey cat purring more loudly in my lap. Cuddled up beside me is one small child, snuggling in full of love and trust and sleepiness. Opposite me a taller girl singing along to the CD in her own fashion.
And it strikes me, this is perfect. I would not change a single thing. This, right here, right now, is the best place we could possibly be, and the best thing we could possibly be doing.
Life is good.
Tia
And it strikes me, this is perfect. I would not change a single thing. This, right here, right now, is the best place we could possibly be, and the best thing we could possibly be doing.
Life is good.
Tia
Thursday, 30 October 2008
Good news
Today we were up at our Orthopaedic Hospital, to see Little Fish's spinal consultant. We got there on time, impressing the receptionists by turning up not just at the right time but also on the correct date. It's been a while since we managed that. And, a mere hour and a half later, we got to see the doctor.
Little Fish's scoliosis has not progressed at all in the past six months. In fact, May's Xray showed a 31 degree curve, today's showed a 26 degree curve. Her kyphosis looked worse but measured the same. They think it is not aggressive (although that may change), they hope to avoid surgery until she hits puberty (in May we were told she wouldn't be able to wait that long, it's better to wait until puberty if possible because once the rods are in, the back doesn't grow any more), and in the meantime, and in a complete turnaround from our last appointment, Little Fish is to be as active and as mobile as she possibly can be. The more moving around she does, the stronger her back muscles will become.
Good news for Little Fish - one less op to worry about for now, and no restrictions on mobility and independence.
Good news for me - I can let her use her manual wheelchair as much as she likes without worrying that she's damaging her back by doing so.
Good news for nursery - she can carry on using her manual chair there too, and transfer to other chairs as necessary.
Big thanks to our physiotherapist who gave up what would have been a day off to come to the appointment.
So, one condition we can stick firmly to the bottom of the list of concerns. Won't necessarily stay at the bottom forever, but I'll take good news for the next few months over bad any day. Now to figure out why both girls have been puking tonight, and why Little Fish has been choking on all her food today. It can't possibly because I told her paed yesterday that she had been doing really well, can it?
Tia
Little Fish's scoliosis has not progressed at all in the past six months. In fact, May's Xray showed a 31 degree curve, today's showed a 26 degree curve. Her kyphosis looked worse but measured the same. They think it is not aggressive (although that may change), they hope to avoid surgery until she hits puberty (in May we were told she wouldn't be able to wait that long, it's better to wait until puberty if possible because once the rods are in, the back doesn't grow any more), and in the meantime, and in a complete turnaround from our last appointment, Little Fish is to be as active and as mobile as she possibly can be. The more moving around she does, the stronger her back muscles will become.
Good news for Little Fish - one less op to worry about for now, and no restrictions on mobility and independence.
Good news for me - I can let her use her manual wheelchair as much as she likes without worrying that she's damaging her back by doing so.
Good news for nursery - she can carry on using her manual chair there too, and transfer to other chairs as necessary.
Big thanks to our physiotherapist who gave up what would have been a day off to come to the appointment.
So, one condition we can stick firmly to the bottom of the list of concerns. Won't necessarily stay at the bottom forever, but I'll take good news for the next few months over bad any day. Now to figure out why both girls have been puking tonight, and why Little Fish has been choking on all her food today. It can't possibly because I told her paed yesterday that she had been doing really well, can it?
Tia
Subscribe to:
Posts (Atom)
LinkWithin
