The BIG Thing

I grew up in a great church community, but one of the things that was communicated to me over and over as I was growing up was that God had a BIG amazing plan for my life. For those of you who also grew up in the church, I’m sure you heard the same message. There was an amazing plan for me that was BIG and it was from God and I was excited. I couldn’t wait for the BIG thing to be revealed.
 

Through my 20’s and beginning my 30’s I was busy raising kids but was still waiting for the big reveal from God – that the direction and skill, talent would all come together. I had a beautiful daughter and son Megan and Joshua. They were great kids and I loved being a mom. Well, as I got a bit older and started my 30’s, I had my last child.  Caleb was a beautiful baby but there were some developmental problems in that first year and the doctors decided to get more serious about looking into them. I knew there was something not right – I just didn’t know what or how bad. It was a scary few years of knowing something was wrong but not knowing how serious it was.

After many years of trying to find the answers of what was wrong with Caleb, he was diagnosed with autism and a developmental disability. So my life became managing therapies, doctors appointments, cleaning up after tantrums, changing diapers on a growing child. Trying desperately to communicate or find ways to communicate with a child who wouldn’t and couldn’t talk to me. The stress was overwhelming and exhausting. Caleb is 13 years old now and not much has changed since those early years. He is still in diapers, still can’t communicate well and is cognitively at a 2 yr old level.

I  felt so hurt by God. The BIG thing I was waiting for was to be stuck at home with a disabled son? Was that all I was good for? To clean up after tantrums and change many diapers a day? I felt God had put me on a shelf, or that my worst fears had been acknowledged by God - that I really didn’t have anything valuable to offer the world. My isolated life with Caleb and trying to manage was my “BIG thing”? I know all this sounds horrible for a mother to be thinking and feeling, but its the process I went through, as ugly as it is. I really was brought face to face with my selfishness and entitlement issues and all kinds of horrible things that were hidden under the surface.

I rode the roller coaster of loving my son completely and knowing he was a valuable person and worth my time and energy to feeling sorry for myself and not being able to function. I often thought that I just couldn’t do this one more day, I was done. However, the next day I would get up and continue. I loved my kids, they were my life, and  I wanted to be the one to look after them. I should stop and mention here that I have had the most amazing husband  through all of this – Randy has been on this journey with me, on the same roller coaster. We have loved and supported each other through the frustrations and sadness and stress, it certainly hasn't been all bad, there has been fun and laughter and beautiful lessons we have learned along the way.

I find perspective crucial to my survival, Its so easy to drown in the everyday frustrations and sadness. If I can change my perspective I can continue day by day, but that is not as easy as it sounds. Why is perspective so easy to lose? What is Gods perspective?   

Jesus said when you do these things to the least of these you do it to Him.  He was talking about giving a cup of water or feeding and clothing the poor, taking care of people who were valued least in society – the least of these. People who are typically valuable to us are people who contribute, beautiful people, rich people, smart people, talented people. But who are the least? Homeless? Drug Addicts? Disabled? What about those who need to be looked after and have to have everything done for them. Jesus said that when you do something for one of them you do it to Him. What a thought! What a perspective!

That’s the perspective I need. I love Caleb with my whole heart, but would I find that it was more noble or valuable if I chose to go to the other side of the world and take care of someone else's child? In the eyes of the society and church that sounds much more noble. So I struggle day by day to find value in the eyes of everyone else.  I’m not sure why I care so much about other peoples opinions. I understand that Gods value system is different from ours, and I am working on having His, but those old attitudes and perspectives have their hooks in me and when I have finally shaken them off and “get” my new perspective they reattach to me when I’m not looking and I have to fight to get them off again.

So then maybe Gods plan for me was BIG, it was just Gods version of BIG, not mine. The BIG thing in Gods eyes is not success, fame, talent and recognition, but its to focus on the countless little things we can do everyday to make a difference, to love, to make someone elses load lighter and to see ourselves and others through His eyes, His value system, His perspective.

Processing....

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.....

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.

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!!

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.

Beginnings

I am a woman in process, I have a son with special needs and my journey has been tough so far, I have not always coped very well. I have always found it fascinating that joy and pain, love and despair can be so closely connected, its that paradox that I live in all the time. Caleb is one of the greatest gifts and joys of my life, but also from time to time has brought me to the end of myself and has left me in deep despair. I lost hope for a very long time and just recently made a decision to try to find it again. I’ve made some progress, I am finding ways to hope again but have a long way to go.

I am not a “writer” but I love words. I have loved words for a long time and loved to read. I love how authors can arrange words like art to say something beautiful and to transport people to another place and time or to cause deep emotions. This is my feeble attempt at sharing my journey through writing. I think being open and authentic about our lives, the struggle, the ups and downs, and the messiness can be a very powerful thing.

There is one experience during a summer several years ago, I remember often, that is pushing me forward to begin this blog.
I was dropping my son off at a summer day camp for special needs kids, I was feeling particularly down that day, overwhelmed and stressed.  I went through the dropping off process and and was rushing back out to the car to go to work, as I was leaving I saw a woman in the parking lot who was also dropping her special needs son off at camp as well.  I held the door open for her and looked up at her as she passed, I will never forget the look I saw in her eyes. To this day, I can see the hopelessness, the deadness, the exhaustion. I got in the car and started praying for her, I felt helpless but wanted to do something. It was then that I looked in the rear view mirror at myself and saw the same look. I was at a loss as to how I could help these parents, that woman, myself. How could I help anyone when I was drowning too? 

Over the years, I have often thought of that woman and that look in her eye, thinking that if I ever “got it together” I would try to do something to help. Well, I have waited a very long time and am still waiting to “get it together”, I have come to the conclusion that I could be waiting a very long time.  So I have decided to move forward afraid and without perfection and answers. I don’t think many people can relate to perfection anyway so, as I try to find hope again, my prayer is that you would be encouraged and find hope whatever journey you are on.

I don’t have a lot of answers, but I love authenticity and would love to open the dialogue of struggling through the hard stuff, finding hope despite pain and discovering Gods hand in it all.

Here are my beautiful kids!