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!

Sunday, June 6, 2010


I've confessed this a dozen times here I am sure, but I cry a lot. And many different places. I spend about half of any given church service blinking back tears and choking back sobs. On my way to and from nursery school, there are lumps in my throat. At the local fair, when I see the "Make a Wish Foundation" booth, to my surprise. Any time, anywhere and with no warning.

I show my emotions easily. I'm like Meg Ryan's character, in the movie where she says "Happy - smile, sad - frown. The corresponding face for the corresponding emotion." That's me. And I don't like to admit that I also feel a lot of emotion. That I am - gulp - emotional. A word that has mostly negative connotations for me.

Negative connotations. Because the words I mostly think of in connection with the word "emotional" are: illogical, weak, out of control, poor judgement, unclear thinking, weepy.... you get the idea?

Connotations are hard to battle. They are subtle connections made in your brain when words often seem to be found "together" in a situation. But that doesn't mean that one word informs us about another. The word "car" is found together with the word "trip" just as often as it is found with "accident." But depending on your experience and how often you personally have heard/used the words together, will affect how you view driving, and in ways you might not even be aware of.

So I have fought a life long battle with myself over my emotions. I would, even now, much rather say I was a "passionate" person, then that I was an "emotional" person. Two words that mean almost the same thing, but with very different connotations. When someone at work is visibly upset by a mistake, they are "emotional." When the same person shows strong feelings and excitement about a cause like world hunger, they are "passionate."

Whichever word you use to describe me, that is what I am. And I still struggle with how I think other people perceive this quality in me. Which makes it quite difficult when my raw feelings of grief are easy to observe by doctors and hospital staff. Or strangers on a bus. Whomever. It's something I'm working on, this acceptance of who I am.

Lately I've been thinking about how glad I am that no matter how silly I feel around other people when I am emotional, I never feel like that around God. I never feel like He thinks my emotions show weakness or that they somehow make me illogical. Or out of control. Or silly. He never makes fun of me for being weepy. Never makes me feel like I'm less valuable because I feel and show those feelings.

And over the past year I have slowly realized more and more that God loves passionate people. I mean, yes, He loves everyone, but He really seems to have a special appreciation for people who feel. And I can give you lots of examples.

Two of Jesus' disciples, James and John, were known as the "Sons of Thunder." I don't know about you, but only one explanation comes to my mind for that nickname. One thing I really love about the book of John, is that whenever John refers to himself it is always as "the disciple Jesus loved." I don't really think John was saying that Jesus had chosen him above every other disciple to care about. I get the impression that this was a man who felt things deeply, and thus deeply appreciated Christ's love for him.

Or what about Peter? You can pick pretty much any random story with him in it, and see that he was one emotional and passionate guy. I don't think you'd be off the mark even to go so far as to say Peter was hot-headed and impulsive. And chosen by God to do some really important things.

Then there is good ole King David. A "common" shepherd boy that God chose to be a king. You don't have to read too far to see that David was an emotional kind of guy. Like the story where he is insulted by Nabal. David and his men have been out in the hills and came upon this guys shepherd with all his sheep. So David and his men sort of took them under wing, and made sure that no one came along and attacked them, or stole any livestock.

So as was custom, when Nabal's men came home, David and his men sent a message asking Nabal to include them in the feasting and festivities. It sounds funny now, to invite yourself to a party, but hospitality was a lot different back then, and in my opinion, a lot better!

Nabal turned them away rudely and with insult. And David was so angry he started marching out to KILL Nabal and all the men in his household. God sent Nabal's wife out to talk some sense into David, and stop him from making such a mistake.

But whoa! Talk about a hot-head. Talk about being passionate. That's only one example of how David had strong feelings. And God chose this guy!

And should I not mention Jesus, Himself? Does it seem disrespectful to say Jesus was emotional? Well, He certainly was passionate. He was angry and He was sad, and He seems to have felt things strongly and a lot. Always in a way that was good. By which I mean that He never did anything wrong because of His feelings. But He felt things. Read the Bible. You'll see it.

It seems to me, from what I know of God and what I know of the Bible, that God appreciates emotion. Well, why wouldn't He? He's the one who put em in us! And when He is referred to in the Bible, there are often emotions attached to Him.

I'm not saying that God wants us all to go around impulsively acting on all our emotions, both good and bad. I'm not saying that if you are not very emotional, you are less important to God. I'm most definitely not saying it is ok to lose your temper with other people.

What I am saying, is that God likes it when we are people who feel things. I know this, and I'm glad. Because I have got so many of them. I am so glad that He doesn't despise me for being unable to suppress my sorrow, or even for openly weeping. I know, even when I do not appreciate my emotional side, that God does, and that He wants to use that side of me. Because emotions are a strong motivation. A motivation to get off of our butts and do something. That is the positive connotation of the word "passionate." It is usually connected with words like: caring, enthusiastic, motivated, whole-hearted, sincere... you see what I mean?

So if these emotions I feel, even the sadness, the sorrow and pain and frustration and longing... all the things that bring me to tears...

If these emotions will mean that I can let God use them to make me passionate and all the things that go with it, then I'm going to try and embrace that more, instead of fighting against it. If God loves the feeling side of me, then I'm going to try and be more free to express those feelings (in a positive way, of course!), and use them as motivation to do what He wants. And not feel so embarrassed or ashamed.

How about you? What do you do with your feelings? Are you ok with being passionate? Here is my invitation to you. Would you like to join me over here, tears and all? You are very welcome, I sure appreciate the company. Let's feel strongly about things. And love people. And let God use our feelings to motivate us and change something for the better for someone else. If we have tears in our eyes, let's hold out a tissue for someone who is weeping.

1 comment:

  1. Your strength, your emotion, your faith and your ability to convey that in words is so awesome. I often read your blog and get very emotional just trying to put myself in your shoes for a day. I think if you try to bottle up that emotion you would explode....you are passionate about the care of your family and especially for Joel to ensure that his time here on earth is as comfortable and loving as possible....you NEED to be Passionate and emotional to do that. God chose you to be Joel's mommy probably for those very reasons. So you are right...God chooses the passionate and emotional to do great things....and being Joel's mommy is a GREAT thing. Don't hide your emotion, your passion or your pride in being that kind of person...because that is what gets you through, it is what ensures the right decisions are being made for your family....and it is what allows us (strangers really) to glimpse into a life that is extraordinary in so many ways and learn about faith, and strength and how to be good friends, family, co-workers etc. to others who may be walking similar paths. Thank you.