I’ve had some bad news this week regarding Caleb. There have been lots of setbacks with him through the years but this one was especially hard, I'm not sure why.....maybe because of my new found hope. What do we do when we can’t change our children or we can’t change our circumstances? We feel like we have to change something, I guess the only thing we can really control is ourselves.
I thought I was doing really well and making some progress with the whole hope thing, but I’ve got more questions now than ever. I know the whole essence of hope is that you have it despite how grim or hard things look, you don’t bail when things get darker. Is my hope that flimsy and pathetic that it can’t make it past the first hurdle? I’m not sure where to go from here though.
I think we’ve been taught to believe that hope is based on circumstances, that what we want to happen comes to pass. Isn’t it more than that though? In a previous blog post I talked about how I didn’t have hope because I was just accepting my reality, don’t you think that has some truth to it too? What about embracing what is....and redirecting hope somewhere else? What if I didn’t attach hope to Caleb's progress anymore? It doesn’t mean that I have lost all hope for Caleb, I still hope for him, but for different things. When is it OK to close the book on hope in a certain area? I know I went on in a previous post about “hope changing the atmosphere” and Caleb responding to that, but have I hinged too much on the circumstances part of it? Caleb tends to take 1 step forward and 2 back.....its very discouraging. I read this quote a while back and it stuck with me:
Never give out while there is hope; but hope not beyond reason, for that shows more desire than judgement.
I suppose the tricky part is knowing where that line is that is beyond reason. Have you seen “American Idol”? There are very sincere people who go on that show and the biggest hope and dream of their life is to be a professional singer.....and they actually can’t sing....at all...not a note on key. What if our desires are for things that just aren’t going to happen? Maybe this is all too fresh and because I’m still processing it all I shouldn’t be talking about it quite yet, but I’m not doing this blog because I have answers, this is simply my journey, and all the messiness, questions and confusion that goes with it.
I am also reminded of the name I decided for this whole blog. Choosing Hope wasn’t a name I came to lightly. It was me declaring that despite how circumstances appear, I was going make the decision to hope. Am I reneging on that now because I’ve hit a brick wall? Or am I discovering that some things we want to happen, no matter how much we hope or have faith just don’t, and that is when we understand again that God is in control after all? As you can see I really don’t know the answers here, I am honestly just asking questions.
I know there is no formula for hope or faith, they are living breathing things that move in and out of our circumstances and are uniquely shaped in all of our lives. I also know that God is God, He is the creator of all things, and is certainly capable of knowing whats best for us and working in our lives beyond our imaginations. I honestly believe with every fibre of my being that I can trust God. Maybe the secret then is coupling trust with hope. You know, I’ve actually been carrying hope like a weight, its been heavy on me. Its been like a pressure and I don’t think its supposed to be that way. So I could actually take the weight of it off me by putting that trust I say that I have in God, giving over to Him the behaviours, the progress, and the things that I would like to see changed. I guess that would mean that I put my hope in God, instead of circumstances and leave it up to Him how they turn out. Sounds great in theory right? Certainly harder to live out, but maybe that’s my answer.....
Monday 28 November 2011
Sunday 20 November 2011
Perspective
I’ve always been fascinated with perspective. How changing the angle and distance from something can completely change what it looks like. A mountain changes depending on where we are, a mile away, a foot away, or on top of it. It’s the same object, but just seeing it from a different position and looking at the same thing in a different way changes our perception of it.
These amazing changes don’t just happen with objects but with everything about our lives. Our individual circumstances to our whole outlook on life can be different depending on our perspective...how we choose to see things.
You want to hear a confession? Sometime I allow myself to have pity parties and get sucked into feeling sorry for myself. I know....gross right? I find the whole thing rather nauseating too but as soon as I allow my attention to focus on frustrations and everything that seems to be going so wrong, the pity party begins. It usually rears its ugly head when I start looking around and comparing my life with others who seem to have it better. Why do we feel justified rolling around in the muck of self pity? Self pity left unchecked can easily turn into bitterness and there is nothing good that comes from a life full of bitterness, absolutely nothing. Bitterness infects and poisons every area of someones life.
This is where perspective comes in, a change in perspective does not necessarily change circumstances, but it changes me. The change of perspective comes when I correct where I put my focus. Focusing on what I am thankful for is the surest way out of the pit. When I start to look around at what I have to be grateful for, then the focus is on the beautiful things in my life, and that list is wonderfully long. A few of the things on the top of my list are the deep, rich relationships I have been blessed with, my husband, my kids, my family, my close friends, there is just nothing like having a community of people around you. There is such a richness in relationships that I am deeply thankful for. This list goes on and on when I start to focus on it, from having a roof over my head and food in my fridge to a good book and a cup of tea .......and chocolate (of course).
Last but not least, what about God’s perspective? He often uses pain and tragedy to teach things that couldn’t be taught in any other way. Sometimes His perspective is, the pain and difficult place your in now is well worth the invaluable gift of compassion or patience or hope that is being produced in you. Now I know that’s way easier said than done, especially when your in the middle of it, I certainly don’t want to trivialize or discount peoples pain. Believe me, I’ve been in pretty dark places where focusing on anything but surviving is impossible. We will not always see or know the reasons God allows us to go through different things but He sees the big picture of our lives and of eternity. I've been asking God to help me see not only my life but all of life through His eyes. My seemingly insurmountable gigantic issues seem pretty puny when I catch a glimpse of God’s perspective.
These amazing changes don’t just happen with objects but with everything about our lives. Our individual circumstances to our whole outlook on life can be different depending on our perspective...how we choose to see things.
You want to hear a confession? Sometime I allow myself to have pity parties and get sucked into feeling sorry for myself. I know....gross right? I find the whole thing rather nauseating too but as soon as I allow my attention to focus on frustrations and everything that seems to be going so wrong, the pity party begins. It usually rears its ugly head when I start looking around and comparing my life with others who seem to have it better. Why do we feel justified rolling around in the muck of self pity? Self pity left unchecked can easily turn into bitterness and there is nothing good that comes from a life full of bitterness, absolutely nothing. Bitterness infects and poisons every area of someones life.
This is where perspective comes in, a change in perspective does not necessarily change circumstances, but it changes me. The change of perspective comes when I correct where I put my focus. Focusing on what I am thankful for is the surest way out of the pit. When I start to look around at what I have to be grateful for, then the focus is on the beautiful things in my life, and that list is wonderfully long. A few of the things on the top of my list are the deep, rich relationships I have been blessed with, my husband, my kids, my family, my close friends, there is just nothing like having a community of people around you. There is such a richness in relationships that I am deeply thankful for. This list goes on and on when I start to focus on it, from having a roof over my head and food in my fridge to a good book and a cup of tea .......and chocolate (of course).
Last but not least, what about God’s perspective? He often uses pain and tragedy to teach things that couldn’t be taught in any other way. Sometimes His perspective is, the pain and difficult place your in now is well worth the invaluable gift of compassion or patience or hope that is being produced in you. Now I know that’s way easier said than done, especially when your in the middle of it, I certainly don’t want to trivialize or discount peoples pain. Believe me, I’ve been in pretty dark places where focusing on anything but surviving is impossible. We will not always see or know the reasons God allows us to go through different things but He sees the big picture of our lives and of eternity. I've been asking God to help me see not only my life but all of life through His eyes. My seemingly insurmountable gigantic issues seem pretty puny when I catch a glimpse of God’s perspective.
Sunday 13 November 2011
He's in There
I came across a video last year about this time that sparked the possibility of hope again. Its about Carly, a girl who seems to be like Caleb in so many ways. It really made me believe that maybe we could reach him, that he was in there after all....
Here is Carly's story...
http://www.youtube.com/watch?v=U_GXVzZ0Unk
I know this is a long clip, but this was a very pivotal 10 minutes that actually changed my life. Carly opened my eyes and once I opened the door to hope I started to talk to Caleb differently, I began to talk to him like he was in there, and that I expected him to understand what I was saying. You can always tell when Caleb is thinking hard, he gets a very distinct (and cute) look in his eyes. He began to have that look when I talked to him. I started to pray for him differently, instead of the typical, memorized simple prayer I usually did, I began to pray earnestly and deeply with him. What happens is subtle and really hard to put into words, but there are changes, they are slow but they are there. Hope actually changed the atmosphere and it has changed Caleb.
I have to say that this whole thing challenged my faith though. Carly’s family had the money to hire therapists to work with her 1:1 for years. I began to question God as to how He could give me a child with these disabilities and not give me the resources to help him. It made me feel like He didn’t see us or didn’t care. I would like to say God and I have resolved all of this but, well, lets just say its in progress. I am working on my understanding that God is in this, sometimes I really see His hand and feel Him in it and other times I feel abandoned. God and I have been talking about it though and I have come to believe that God is bigger than therapists, He is bigger than our money issues and most of all I believe that God is writing Caleb's story, it will be different from Carly's I know, and probably different than what I ever expected but written by God just the same. I have to make a choice to believe these things because I don’t always “feel” it or see any reason to think differently, but then I suppose that's the essence of faith isn’t it?
In this new world of hope, I am choosing to believe that God sees, hears and knows my discouragement and my ache. I choose to believe that He has a plan.
Since I have moved from living in discouragement to hope, Caleb is responding in ways that I can’t explain, he is using more words and is more interactive than he used to be. It may not be in leaps and bounds but it has been enough to break the hard shell of skepticism that was “protecting” my heart to believing that we can possibly reach him. He is responding to hope, he is in there.
Here is my boy!!
Here is Carly's story...
http://www.youtube.com/watch?v=U_GXVzZ0Unk
I know this is a long clip, but this was a very pivotal 10 minutes that actually changed my life. Carly opened my eyes and once I opened the door to hope I started to talk to Caleb differently, I began to talk to him like he was in there, and that I expected him to understand what I was saying. You can always tell when Caleb is thinking hard, he gets a very distinct (and cute) look in his eyes. He began to have that look when I talked to him. I started to pray for him differently, instead of the typical, memorized simple prayer I usually did, I began to pray earnestly and deeply with him. What happens is subtle and really hard to put into words, but there are changes, they are slow but they are there. Hope actually changed the atmosphere and it has changed Caleb.
I have to say that this whole thing challenged my faith though. Carly’s family had the money to hire therapists to work with her 1:1 for years. I began to question God as to how He could give me a child with these disabilities and not give me the resources to help him. It made me feel like He didn’t see us or didn’t care. I would like to say God and I have resolved all of this but, well, lets just say its in progress. I am working on my understanding that God is in this, sometimes I really see His hand and feel Him in it and other times I feel abandoned. God and I have been talking about it though and I have come to believe that God is bigger than therapists, He is bigger than our money issues and most of all I believe that God is writing Caleb's story, it will be different from Carly's I know, and probably different than what I ever expected but written by God just the same. I have to make a choice to believe these things because I don’t always “feel” it or see any reason to think differently, but then I suppose that's the essence of faith isn’t it?
In this new world of hope, I am choosing to believe that God sees, hears and knows my discouragement and my ache. I choose to believe that He has a plan.
Since I have moved from living in discouragement to hope, Caleb is responding in ways that I can’t explain, he is using more words and is more interactive than he used to be. It may not be in leaps and bounds but it has been enough to break the hard shell of skepticism that was “protecting” my heart to believing that we can possibly reach him. He is responding to hope, he is in there.
Sunday 6 November 2011
The Truth Of Hope
Hope and I have not had a great relationship for the last several years. I have found though that living without hope is a sad existence. When I talk about not having hope, it really is specifically about Caleb, but essentially I have tied hope and faith for my life to his progress, probably not the healthiest idea, but my reality nonetheless. I’m in the process of untangling that mess.
Caleb has just had his 13th birthday, and has been assessed cognitively at 18 months to 2 years - essentially he is a 2 yr old in a 13 year old body. I have been in the process of trying to toilet train Caleb for about 10 years now, there has been no progress. Do I accept that its not going to happen? Do I keep trying and believing that one day it will “click”? I just can’t admit defeat with this one, but I feel like I’m banging my head against the wall, literally and figuratively :)
Hope hurts sometimes, it can be so discouraging, it was painful to have it, so I let it go. Isn’t it natural to give up something that constantly hurts? I know it sounds horrible to give up hoping for your child, but it helped me to live safer, or so I thought - more emotionally healthy. You know, accepting my life, my reality, living everyday as it came and not in a fantasy of what I wanted it to look like, waiting for the miracle instead of living today. I thought that was what was healthy emotionally. I was wrong, that didn’t work so well......maybe my idea of hope has been misguided or not the full truth.
I guess the choice is, you can live safely without hope and protect yourself from the chance of getting hurt but the exchange is that life is never what it could be, you’ve accepted the lowest common denominator for your life or that of your family. Or you chose hope and faith, put yourself at risk of getting let down again and again but you keep the door open to possibilities. In the end, hope is the better way. I guess that's why I’m still trying to toilet train after 10 years of no progress, I know it can be so discouraging but settling for less than what could be for your life or your family is just tragic. So, here I am, trying to find the truth of hope and faith.
Caleb has just had his 13th birthday, and has been assessed cognitively at 18 months to 2 years - essentially he is a 2 yr old in a 13 year old body. I have been in the process of trying to toilet train Caleb for about 10 years now, there has been no progress. Do I accept that its not going to happen? Do I keep trying and believing that one day it will “click”? I just can’t admit defeat with this one, but I feel like I’m banging my head against the wall, literally and figuratively :)
Hope hurts sometimes, it can be so discouraging, it was painful to have it, so I let it go. Isn’t it natural to give up something that constantly hurts? I know it sounds horrible to give up hoping for your child, but it helped me to live safer, or so I thought - more emotionally healthy. You know, accepting my life, my reality, living everyday as it came and not in a fantasy of what I wanted it to look like, waiting for the miracle instead of living today. I thought that was what was healthy emotionally. I was wrong, that didn’t work so well......maybe my idea of hope has been misguided or not the full truth.
I guess the choice is, you can live safely without hope and protect yourself from the chance of getting hurt but the exchange is that life is never what it could be, you’ve accepted the lowest common denominator for your life or that of your family. Or you chose hope and faith, put yourself at risk of getting let down again and again but you keep the door open to possibilities. In the end, hope is the better way. I guess that's why I’m still trying to toilet train after 10 years of no progress, I know it can be so discouraging but settling for less than what could be for your life or your family is just tragic. So, here I am, trying to find the truth of hope and faith.
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