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!

Monday, December 28, 2009

Falling in love

Ok, here is part two. If you didn't read the one before this, I'm starting in the middle of a thought here, so you might want to go back and read it.

What happened to wash out that dark corner of my mind, that insidious voice that suggested that Joel's illness was some sort of punishment?

This is going to sound strange, I know, but it is the only way I can explain it. I have always loved Joel. You wouldn't spend night after night for the first 4 months of your child's life with only one hour of sleep in your bed before you had to get up and spend the rest of the night propped up on the couch. Every half hour to 45 mins you give comfort to the little one resting on your chest... Ok, that is love, yes, I always loved Joel. But strangely, as time has gone on, I have "fallen in love" with him. Which sounds bizarre I know, but I don't know how else to explain it!

There is so much to grieve in what has happened. I have lost so much, and I hurt on behalf of Joel too. Especially in the times where he is unhappy. And also for our family as a whole But there is a very real amount of grief which is for myself alone, for what I have lost.

If you have been blessed with only healthy children, you have no idea how painful it is to be out with your little one who is so different from regular children and see happy families with the two healthy children you had thought you were getting. I can't even begin to list all the things that are lost to us, so I'm not going to bother.

The only way I know to describe that feeling is that it is very like the feeling you get when you see your first love who has "dumped you" arrive at the party with a new love for the first time. The pain and longing that shoot through you as you see the one you wanted so very much and is now out of reach and in the hands of another. That is the way the pain and longing shoot through me when I see those families. And how that longing can linger...

Or the pain I felt when out in public as well meaning people asked Joel's age... I couldn't even meet their eyes. I honestly don't know what expression, if any, was on their face when Joel's eyes started jumping around, obviously not working right. Or that he was so old and yet so small, or not sitting up. I was so afraid of what that expression would be, of how it might cut through me. I really just couldn't look at their faces, an act of cowardice that suprised me as I have usually looked such realities head on.

Well, let's come out of that dark place in my heart. Because things have changed for me somehow... Because as time as gone on, I have fallen in love with my little boy. I really wish still that he could experience all the things he must miss out on. Of course, I long to have him happy and well for the rest of his life, and I know how ever long he has here, it won't be long enough for me...

But I love the way his beautiful eyes "bounce" around. The way they roll back when he is thinking about something, or listening intently. I love the sweet and expressive burbling he makes. His little hands and feet are the sweetest things I have held, rivaled only by holding Steve's hand in a tender moment.

His evident joy when I pick him up. The way he will try over and over and over to say "ma" for me. He is such a patient little man. Yes, I loved those things before too, but?? How can I explain it? I have fallen in love with my little boy!

And so, I can never, ever feel that his illness is a punishment, cause it is part of him, and I love him just the way he is. I have a feeling of awe and privilege when I hold him at times. Sometimes I am overwhelmed when I look at him. I say "You are mine. You are mine, and no one elses." No one else gets the privilege of taking care of him, sick or well. No one else gets the privilege of holding that special place to be his "mummy."

Would I heal him if I could?? Of course, in a flash! Because I want him to be well and be able to grow and experience. But for myself, all that I have lost no longer seems like such a big deal. I am so proud of my little boy. And he is so very beautiful.

Yes, I really feel it. God has blessed me with my little boy. He is a gift.

No comments:

Post a Comment