Monday, October 24, 2011

How am I?



Can't think straight. 

Feel like I can't breath.

But not despairing.

I know that God is still in control.  He must just have a different plan for Ashlea's transplant.

One of my first thoughts was "God must have a plan B".  But in reality, His plan is always Plan A.  I don't know what the new plan is, or why this has happened but I do believe He is still in control.

It's funny, because I always say that one of the biggest lessons I learnt when the girls were in the nursery was that God is in control.  He is the one that determines the number of our days - and as our creator it is His right to do so.  Yet even though I say that God is the one in control, over the years I have slowly been taking back control.  I have made it my mission to not just be Ashlea's mum, but to be the one responsible for keeping her alive.   Not just by being a vigilant mother, but now by giving her a kidney to ensure her life continues.

I feel like this is one of those reminders from God about who is really in control.

I know many people will find this idea very unpalatable - but as a Christian I feel that I need to go on the record and say that in spite of things not turning out the way I want - I will continue to trust God.

I know there will be people who will read this and think "I don't know how you can believe in a God who could let this happen".  All I can say is that I couldn't get through this without knowing that God is in control and without knowing that there is something better to come.  Christians believe in heaven - where there will be no more death or mourning or crying or pain.  God is looking after Ashlea - not just for this lifetime - but for all eternity.  I couldn't do this - live this life with Ashlea - without that hope.

There have been many times God has looked after Ashlea in the past - in spite of my best efforts to interfere. This week I got back the results of a medical trial the girls were involved in when they were in the NICU.  It was called the INIS trial and it studied whether giving IVIG (immunoglobulin - antibodies) to sick, premature babies resulted in better long term outcomes.  At the time of the trial we agonised over whether to be involved - not because we didn't want to take the risk of being involved - more because we didn't want to take the risk of Ashlea not  getting the IVIG.  We were so hopeful she would get it and that it would help her.

She got the placebo.

Audrey got the IVIG.

When I first found out I was gutted. 

What if Ashlea had got the IVIG?  Would it have made a difference?  Could it have helped even a little bit?  How frustrating that she - the one who needed it most - got the placebo.

After awhile I started thinking about it though and I realised (and the kidney specialist confirmed) that it may have actually been a bad thing transplant-wise for Ashlea to have received the IVIG.  IVIG is basically other people's antibodies - antibodies attack infections - but they also attack transplanted organs.  If Ashlea had received it she would find it very hard to find a kidney she wouldn't reject.

I believe that God was looking after her through that.

What do you think?  Do you believe there is a God who is in control of this world?  Or do you think everything that happens is totally random?


mandy said...

Alison, my faith has taken a heavy battering in the last 6 years, not only for my family, but for others as well. I suppose if your faith in God helps you to be a wonderful mother day in and day out, then thats a terrific presence to have in your life. What I do believe is that God doesn't intervene from a heavely place, but people intervene, people help, are kind and remind you that they care.

Anonymous said...

Hi Alison – I'm right there with you, hoping, praying... trusting. All of which seems fairly easy for me to say from where I'm sitting, but I have to say it's incredibly encouraging to hear you say it. Parnee xx

Anonymous said...

I think we all need reminding sometimes that God is God - not us, for a reason! All my efforts are full of human frailty and error, His are perfect. I would never have visited this on you for anything...but I am thankful that God has a plan for Ashlea, that He is in control and that through all of this you guys are learning more and more to rely on Him, to trust Him and to live in the firm knowledge of a beautiful eternity to come. One day Ashlea will run, dance and sing with a perfect body! What a wonderful picture to remember in those dark times when being human is all we can be. Love you xx

Kellie said...

Alison, I haven't gone to church in a very long time, but I was brought up in a born again Christian environment. I do understand everything you have written on a fairly deep level.

I believe there is a God who cares for us and we will return to him when we die.

I think that believing that he can intervene in our lives helps us to make it through the difficult times, and to take a deeper look at ourselves and life.

I think that in a time of crisis it is really important to hold fast to your beliefs.

I believe that God has his hand on you and Ashlea, and that together you will make the most of every situation you find yourself.

I think events in life are random, but life isn't really about events. It's about how you deal with them. And that's where your relationship with God starts. Dealing with random events.

Deb L said...

We live in a fallen, broken world where God's good plan has been spoiled by man's desire to live in independence from him. The brokeness shows itself in people's sinful wilful decisions but also in the collatoral damage of suffering through sickness, disease and random disasters that affect all of us in greater and lesser ways.

I think sometimes we don't know the way God is caring for us. We can see that God hasn't made it possible for you to have this surgery and so it's natural to think he hasn't been gracious. But maybe his mercy is in not letting you have that surgery - what might the ramifications have been that we will never know about? It maybe a similar situation again to the IVIG that you mentioned. We see the plans before us and sometimes we feel sure we know the best path to take. But God sees a longer, bigger picture.

Then again, perhaps this situation isn't like the IVIG. Perhaps it is not going to help Ashlea's health or your own. Perhaps it's just another horribly-not-good thing to happen. God's still in control. Those that are in his care can trust in his kindness and mercy and his ability to hold all things together. Sometimes God's grace shows itself in the removal or absence of some kind of suffering. Often though his grace is shown through his sustaining of us while we endure that suffering. Each day is God's gracious provision for us until the day we see him face to face. Because this life is not the end game.

Praying for you today. I can't imagine how hard the road before you must seem at present. And yet we can pray because we know He is in control.

Sarah said...

Oh Alison, such hard questions to ask of me...I could write an essay! Here goes...

I was brought up religiously until 18 when I chose not to continue with it.

I have had numerous things happen in life to my family in regards to health i.e. Violet, Myself and my gorgeous nephew who passed away last year at the age of 7 after a long 3 year battle with cancer and we miss him everyday.

Personally, after all the things that have happened just in our life, I feel I wouldn't want to know a God that watches on as others suffer and go through this kind of life and loss.

Casey said...

That our God is infinitely more qualified than we are to care for our children is absolutely true.

Living that out as a parent is absolutely terrifying.

Love and prayers always

ferfischer said...

Alison - I wish I could come right through the screen and give you a big hug. I am thinking of you during this time as you wait for some answers. As fr religion and God - it's complicated - I think you know how I feel - but I do believe that somehow, some way, you all will find the support to make it through, and I am one of those people for you. I don't know why bad things happen, and I don't think God does either (if I believed in God) but I believe that God will help you through whatever life gives you (at least that's what I would believe if I believed in God).
Hugs hugs hugs.

Lacey said...

Allison, I'm so sorry about the crossmatch! If you could test me, I would so give a kidney to her!!

My faith has been tested so many times. The biggest problem is that the religion i grew up in, I don't believe now as an adult. So while I say I'm a Christian, I'm easy swayed with things that happen. I know that means I'm weak, but its true.
Watching my grandmother, who loved God so much and did everything for him, suffered unbelievably in the end of her life. Jax having one problem after another, where is his break? My dear friend, who lost her 8 year old daughter with DS when she just dropped dead 18 months ago, now her house burns down, not only losing everything, including Carlys things, but her teenage son died as well. Enough is enough for one person!

Susan, Mum to Molly said...

Hi Alison

I think my faith journey is probably best described as opposite to yours since our 'defining moments'...

However, your faith journey is your faith journey and noone should criticise you for that or even find it unpalatable.

It is your faith, your feelings, your heart & soul - and therefore, by definition, cannot be 'wrong'.

I'm just glad you have something to give you a little bit of comfort/peace of mind through this upheaval...

Big, big hugs, Susan xx