This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Tuesday, April 13, 2010

Wonderful Plan: Part Two

Here's the part where I do a bit of "flash back" to previous events in my life. I think it might show in part why I am where I am today. And the parts I'm sharing here will, I think, speak to why I am so sure that God is good, despite the fact I'm losing my son.

Cause when I look back at my life, I see the marks of a Hand on it. Though I have never believed God caused my son to be terminally ill, I must admit, He has allowed it. I think He had it contained all along in His plan for my life. I think it was something He always knew was coming, and maybe if I share some things about the past, you'll be able to see how I think that God knows past and future, and brings all events and choices together with this knowledge, until "all things work together for good, to those who love God." Tough verse, when your son is dying. But maybe this insight into my past will help explain...

When I was growing up, I had foster brothers and sisters. My parents were foster parents, and many of the children were First Nations children. The last set of foster kids that lived with us were a set of 2 boys and 2 girls. They lived with us for a long time (all together about 3 years). We wanted to keep them.

This part of the story is still painful, and I don't talk details with everyone. So, I'm not going to get into it now, on a "public" blog. I will just say that when I was a teen, Social Services moved these children to another home.

I loved them. They were my brothers and sisters, and losing them was a terrible grief in my life. It was very hard for me to understand, and left me wondering for many, many years how God could let something that seemed so evil to me happen to my family.

But just before it happened, God stepped in. I had grown up in a home where belief in Jesus was always a part of our life. And I knew Him. But just before I was thrown into this period of sadness, God sort of spoke to me. It is hard to explain how this works, if you've never experienced it. I'll just say that I felt Him, His presence, wanting to get closer to me. So I said yes to that.

And because I had said yes, and let God get closer, I could make it through that time of grief. He truly got me through. And when I graduated from High School, I went to Bible School for 3 years. Wonderful years. I said yes to God again, when I went to Bible College, even though some people expressed reservations about how three years at Bible College would stand me, instead of moving on to University.

They were three of the best years of my life and I have never regretted them. I learned so much. I made the best sorts of friendships. But most importantly, I got closer to God. And if I hadn't have done that, I'd have never gotten really close to a friend from Manitoba. And I would never have ended up in Winnipeg.

My life went on, but I'll skip some of the smaller details. Otherwise this will be a book, otherwise known as an autobiography!

So going forward several years: I ended up in Winnipeg, working at the front desk of a hotel. God was still important to me, yes. But life was sort of dry. I felt like the business world was a desert just sucking all the moisture from my soul. I decided to go back to university to become a teacher. The spring before University was to start a good friend, one I had met years previously in Bible College, suggested to me that I quit my job at the front desk and work at camp for the spring/summer to get money for University.

I said no. It was not possible. I could make more money at the hotel. And I had never worked at a camp. And the camp she suggested was far away, and I didn't know anyone out there. It just was not practical.

So guess what happened? Right about that time, the hotel chain was sold and the new owners started to lay out some new policies. The front desk was called to a meeting where we were told the new policies. At one point someone objected "but then we would need to lie to the customer." They were told "Then lie." I sat at that meeting and knew that my job there was through. It was a relief. I didn't have to agonize about if I should quit or not. I couldn't do what they asked, simple as that.

This suddenly left me jobless for the spring and summer!! What other job could I find that would fill those four months until university?? Apparently camp. It seems that working at camp was in God's agenda for me.

So for three spring and summers between university I got to work at a wonderful camp in BC. It was one of the best experiences of my life. I am still so very grateful I could be there. New bosses that ask you to do ethically questionable things, that's bad. Losing your job, that's bad. But God stepping in to give you something that He wanted you to have, even when you said no, that's GOOD.

Let me skip ahead a bit. To the time I had graduated from university, but was not yet teaching. I was working with children with CP. It was a great experience, once again. I was very glad for it. But I needed a teaching job, and soon, as I had a student loan to pay. At that time, I was in love with someone and really wishing they would see the light and love me back. I had my plan.

You see, ever since my foster sisters and brothers who were Native, I had always had this, well, love?? for Native people. It seemed to me that if I couldn't love those brothers and sisters, the one thing I could do for them, was to see them in all Native people. I couldn't be their family, but I could show kindness and love to other Native people and that is what I wanted to do. But in Winnipeg.

In a nutshell, here was my plan: I would marry this young man who also wanted to work with Native people. I would live in the North End (where it is predominantly Native) and I would teach there. It seemed perfect.

But it wasn't God's plan. He came with a big eraser and erased it all. All I can tell you is that it was a VERY painful process, starting with the man I loved falling in love with someone else. And things just didn't seem to work out in any other way either.

So I started to reconsider something I'd already said no to. That was teaching up north, on a reserve. I had considered it briefly but had been strongly warned against it by other people. It was dangerous, I had no real protection, I was a very visible minority, I would be far from people who would support and help me, etc. I had to agree. It scared me.

But when God erases your page of plans, you at first see only a blank paper. It is only later that you realize the blank paper is perfect. Because now God can write on it. So I reconsidered. Maybe God DID want me to go up north, to a reserve.

By this late date I found only one posting for up north. And I was really skeptical that it was even still open. After all, the school year was starting already. But I took the information along with my resume to a friends house to fax it.

We tried to fax it several times, but it just wouldn't go through. Good, I said. Relief. That obviously WASN'T where God wanted me. Thank goodness. But my friend said let's try one more time. I sure didn't want her to, in fact I tried hard to tell her it really wasn't necessary, but what could I say? And that time the fax went through.

A day or two later I came home to a message on the answering machine about the job. And I kid you not, I fell on the living room floor and started laughing and crying. I said out loud "I think I'm going to Oxford House" as I lay there on the floor. I knew the job would be mine. I knew my sneaky God was taking me places I would never have dreamed of. And I was right.

Oxford House was also a wonderful experience. I don't regret any of it, except for the parts where I myself messed up. And that is where I met Steve. My husband and Joel's father. The odds are pretty crazy, of us meeting up there like that. And of us both having that crazy, horrible gene time bomb that we had no inkling of when we first saw each other.

You see, I am sure God has a plan for my life. He knows what to do to get me where He wants me, cause I have already said the biggest "yes" and given my life over to Him. He has never forced me to do anything, but I am also very thankful He has worked around the honest mistakes I have made about what I should do with my life.

If it wasn't for those foster kids, I'd never have had an interest in Native people. If it wasn't for my broken heart, I'd never have considered Oxford House. If it wasn't for Oxford House, I'd never have met Steve. And if it wasn't for that, I'd never have had Joel.

When I look back, I see God's hand everywhere. When I look back I see how God's hand was always trustworthy, even in the really bad things. So when I look ahead, I can say it with confidence. I might not see it all now, or even before I die. But I am sure that God has a plan for my life. And I am very, very sure that no matter how much pain, or even agony I go through, though I may not see it or feel it at the time, at the very end of my life I will be able to say that the plan WAS wonderful, all along.

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