Sunday, 23 March 2014

It isn't all picnics and popcorn.

Life is rich. God is good. I find myself, over the past few months with more opportunity than ever before to leave the house and temporarily walk away from all the worries. And walking, alone or with friends, has been the perfect way to spend time in God's company, appreciating his creation, recognising his awesome power and majesty. 

Standing on the top of a hill, I can see how big this world is, how much bigger the creator has to be, and just how tiny I am. Leaning against a tree in deep woods, I can marvel at the intricacies in the bark, lose myself in a fractal fern, wonder at the amazing diversity even amongst the grubs and mini beasts. 

Seeing how small I am, I can see how minuscule my worries and fears are, in comparison to the rest of this world. And yet at the same time, I can know more thoroughly than ever that God hears me, and is so much better able to carry those concerns than I am. 

It's an exercise in trust, and it is soul refreshing, just as much as it is at times physically exhausting and somewhat sweaty. Walking away from my car, I am increasing the time it would take to get back home with every step I take. That's significant. When Miss Mog (who I think needs her own name back now; I can't pretend this is an anonymous blog any more), Imogen, our beautiful and precious Imi started school nine years ago, I needed to be on call whenever she was there. For nine years, I needed to be no more than thirty minutes away, in order that I could give second and third line rescue medications, and beat the ambulance if I had to. 

And now, Imogen is no longer well enough to attend school. And I am both more tied to home than ever before, and more free to travel further when I do go out. Tthree days a week, nurses take over Imi's care; in pairs they come, and I go out. 

She really isn't well, this most precious child. For two hours last night, and four or more on Friday, I stood over her bed, pouring more medications into her stomach, her cheek, her nebuliser chamber, adjusting her oxygen therapy, running down the battery on her suction pump, calling hospice and community services, and willing her to just slow down and take a few good deep breaths. Horribly aware that this takes its toll on her. That four hours of not being able to catch her breath must be utterly, overwhelmingly exhausting for her - it is tiring enough for me, and I only have to watch. Giving more medication, or knowing I have given all the medication I can, and having to just watch and wait and hope that it takes effect. Knowing each time that this might be the time when it is all too much effort for her, and that this might be the time when she just decides she's had enough. 

We've looked at alternatives. We've had the big discussions. We could, in theory, open a hole in her neck, and attach her to a ventilator, and take these breathing problems away. Except that the breathing issues wouldn't necessarily go away, the ventilator would bring its own complications, and the one certain thing which would disappear forever would be her voice. And Imogen loves to sing. I think it wouldn't be unfair to say Imogen lives to sing. She can't talk, but she can sing in pitch. Before she understood language, she understood harmonies and was soothed by them. Rippling consecutive sixths, variations on the harmonic series, deep deep hums and piercing whistles; she loved them as a baby and loves them still. 

It's not been an easy decision. We have friends with tracheostomies, and we've seen the improvement in life it has given them. TLP (who also deserves her own name now, I think. Amana then) uses a ventilator each and every night, in order to compensate for her brain's lack of respiratory drive when sleeping. 

But, different children, different issues, different decisions. And so for Imi, and with Imi, who has an interest in these kinds of decisions about her, we have decided that we will do all we can to support her where she is, to make her life as rich and deep and meaningful as it can be, and to give her as much help as we can, whenever things get difficult for her. But we have set her ceiling of care at a point where she has to make the effort to breathe for herself - and at a point where she has the option to stop doing so if she needs to.

And the trouble with drawing a line, as a wise friend said, is that there comes a time when you cross it. And whilst we know what that means for Imogen, and will rejoice for her, we also know what that means for those of us who are left behind, and just how impossibly hard that's going to be for us all. 

The temptation to do anything at all to postpone that hour, to delay what we know is going to come at some point, to take charge and to refuse to allow it to happen is overwhelming. I want to be in charge, I want the driving seat, I want to force a way through and to keep on going. But "Not by might, nor by power, but by my spirit" says The Lord Almighty, and that's the verse he gave me for Imi on the morning of the biggest discussions, and it's the verse which is driving these decisions. 

It isn't up to me. There's nothing I can do. Even if we went for full intervention, throwing everything physically, medically and surgically at Imi, even then whilst we might delay her dying, we would do nothing to prolong her life. I can't add a single day or hour to those ordained for her. Not by my might, nor in my own power. I have to leave it for her to settle with God in her own way. 

And so my world shrinks, as I am home with Imogen when times are likely to be worst for her (normally just as the nurses are leaving), and my comfort zone when she is with her regular sitters shrinks until I am no more than a few minutes away, with good phone signal, at all times. 

But at the same time, my world expands, as I am more free than ever before during those times when she is in the care of our lovely nurses. 

I need to leave the house (unless I need to sleep); three adults all with ideas about how things should be done is never easy, and is a waste of resources. And I need to leave the house, because it is getting harder to predict when it will be ok to leave the house with Imogen, and when she just needs to be in bed. 

And I need to leave the house, because I need to be able to get back outside, where the horizon is vast and my own self is so small. I want to say I need to leave the house in order to centre myself properly, but the truth is, I need to leave in order that I can get myself properly back off-centre. It isn't about me, it's about putting God back in the centre and fitting myself in where I am supposed to be as precious daughter and imperfect reflection. 

I started writing this this morning, when the house was silent and still. And then had to stop, and let the day begin. I gave Imogen her breakfast, and she slept. Sorted her nebuliser, and she slept through that too. Changed her, hefted her into her wheelchair, tweaked her position, threw a hat over her seriously wild hair and a lovequilt over her twisted body, and still she slept. We walked to church, where the seating hat been sorted so her perfect spot was perfectly aligned, and she slept on. The band was loud, the sermon like drops of rain to a parched soul (and followed on so beautifully from what is started to write here), the worship was beautiful, and she slept on. But quiet sleep with only a few little twitches. Restful sleep, with numbers on her monitors perfect and reassuring. Gentle sleep,with unlaboured breaths and a delicate, untroubled face. 

A gift, after two stormy nights. And the reassurance I needed in order to be able to drop her off (awake, finally) at respite, where, through the CPAP she hadn't managed without all day, and over the buzz of the nebuliser she decided to demand as we walked through the door, she smiled and created a list of demands for the staff. For the next two days, she wants to use the jacuzzi, have lots of stretches, listen to her choice of music uninterrupted by her little sister, and generally relax and be pampered. I can live with that. 

She isn't, I don't think, at the end of her life just yet. But she's definitely more fragile than she was a year ago. The decisions we've made have not, in fact, changed very much at all. We have reverted to the plan we made for Imi several years ago, when it became apparent that plans needed to be made. And, typically, having signed off on the paperwork which enabled us to opt out of hospital treatments and surgeries, she went on to have one of the best years of her life. Could that be the case again? Maybe. Or, any one of these breathing episodes could be the one where she just gets too tired and stops. 

Imogen has made it very clear she isn't interested in surgery. She wants to breathe, but she wants to breathe for herself. She has an active faith, she walks with God already, and she knows that one day she will be running to meet him with a new body and legs that really work. She will have a lot of friends waiting for her there, and a sister who might just be wondered what took her so long. 

I can't control this. And there's peace in remembering that. All I can do us all I have to do is trust in God and Imi to make it right between them. And in the meantime, we work together to give her a life that is rich and deep and wide, even if it may not be terribly long. Of course, it could be very long indeed. I have no idea. But a life that is rich and deep and wide is going to be good, whether it is months or years or for however long it will be. 

And in the meantime, I will walk. With God, with friends, with whoever wants to come alongside. And I will make popcorn and brownies when I am at home, because life is good, and these are some of the things which make it so. 



pippinsmum said...

Tia, words are not enough, praying for you, and Imi, and her sister too, God bless you all,

Anonymous said...

Oh Tia, Thanks for sharing-I know it probably wasn't easy to write as I am in tears just reading.
What tough decisions you all had to make-Thankful that you all know the Lord and can lean on Him--Both you and Imi---
It is amazing the spirit and spunk our kids have---
Praying for you all

Anonymous said...

Hi, you may not remember me, I'm Erin, I used to be a carer, I stumbled across your blog and have been discreetly following it, I often think of you and your girls, you are a very inspirational woman and a wonderful mum. Love and prayers to you and the girls and I hope you don't mind me following your blog.
Erin x

Anonymous said...

Thank you for sharing your lives and thoughts. We have a Great God who is using you and your family as a blessing to a great number of people. I count it as a great privilege to be your friend.

Caz said...

There's something very moving and powerful about you using your daughters own names. Also in your description of the need and the restoration of being outside, which has also been a huge factor for me in getting through this winter. I don't have a God in the way that you do, but this makes me extremely glad that you and Imi do. It sounds like you're both making excellent choices, including the one to keep breathing for now.

Tia said...

Erin yes of course I remember you! I hope you and your family are well. The girls loved the card you sent when you left; I've never been able to thank you before now.

Anonymous said...

Thanks, we are well, it's lovely to hear how your getting on and of course your welcome for the card. My email is if you would like to stay in touch it would be lovely to hear from you all x

Anonymous said...

Thank you for sharing your two beautiful young ladies with us. Imogen sounds like she is such a wise young lady, and you are an amazing mum to be able to not only share the fun parts of your lives with us but also the hardest parts too. I found your blog a while ago and have I think, now read most of your posts, and pop over regularly to see how your family is doing xxx

Linda said...

You write so beautifully, even when it must be very difficult. Thinking of you all as you go through this difficult time.


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