Wednesday, August 20, 2008

Sometimes I think I’d just like to forget everything and move on with my life. Other times I feel like I’m forgetting too much and want to refresh my memory. There’s no happy medium, for I know that I really don’t want to forget, I love the memories we have, I just hate the pain that comes with them. There are times when the pain is not there, I can simply feel the joy of the memories and the joy of the peace that James has. But often there is pain and sadness and regret.

It seems I travel in an up and down pattern. For a period of time I go about life with James in the background, always there, but not affecting my forefront emotions. I can look at his pictures, talk about him and enjoy the memories without feeling those deeper emotions. Then there come times where I suddenly feel I’m losing touch with my boy and I begin to wish I could do more and it consumes much of my mind and time. I find there is no point in attempting to ignore these periods, but instead to throw myself into them, for after a period of time I then feel like I need to step back as he’s consuming too much of my life and I must focus on the current life. Sometimes it’s just the business of life that pulls me away again, sometimes I just do it on my own.

It is during these times that I find myself back involved in the support groups related to James. Where I surround myself with different projects that help with James’ memory, whether it be the photo album I just added to the side of the blog, or working on a music video of his pictures, or sending his pictures off for various projects the chILD support group and Foundation work on. It during these times I need to watch homevideos again so that I can hear his voice again and revive his character. How I wish our boy didn’t have to suffer so when he was alive, and how glad I am that he no longer does suffer. Knowing that his suffering is gone makes it all just a bit easier to deal with.

On Sunday we sang Psalm 139 at church for the first time since James passed away. It hit like a ton of bricks and brought back some very strong emotions. What a beautiful song that says so much, but oh how it hits home. I’m guessing the emotions ran stronger also because I’m in one of those times where I’ve been busy with James again.

Some time ago I attempted to put together a “music video” of James’ pictures, but I needed to order some music first to do that. I ordered the music and then moved on and forgot about the project, until the music arrived. At the same time I received an e-mail from a Nursing School asking permission to use photos of James’ to help introduce all the medical assistance he was receiving as well as drive home the need for patients to be treated like people, he also asked to use some of my personal comments about our experiences with nursing. The Prof. will follow up with me to let me know how the class responds to the presentation. A day later I received a call from the Ronald McDonald House asking permission to use what we had written in our thank-you letter for their various publishing materials. The other day I received a copy of the DVD used at the 2008 chILD Conference which shows pictures of the many kids with suffer for ILD, it ended with a Loving Memory page for James and Corrina, another chILD who passed away in 2007. James is also featured on the chILD Foundation page (Family Support) as well as recent links to his story on the Breathing is Living website and Kids with ILD blog.

When all of these things happen at once I start to feel more involved with James again, he feels real again and I miss him more again. But I’m glad that his name is still out there and hopefully in it’s small ways promoting awareness and helping others. As I check the Referrals list on his blog counter I see a small but regular traffic arrives at the blog each day usually searching for medical questions or looking at the picture of after his lung biopsy. Our purpose of setting up the blog was to help and educate others on what to do and expect if confront with a similar situation … and since I am not an energetic, outgoing, public type of person I hope that in some small way we are still doing that.

6 comments:

Anonymous said...

we continue to hold you close in our prayers! The pictures you added are beautiful!
Rich and Tracey Stam

Anonymous said...

Oh Steph-I just want to hug you!!
The pictures of James made me cry-I can't even begin to imagine what you are going through! We continue to pray for you and your family.
When we sing "Loving Sheperd" in church(which we sang at our Joshys funeral) it just totally hits me like a ton of bricks! It is definitely hard to control your emotions and not get lost in memories. May the Lord "carry" you close to HIm!
Karen

Lisa said...

Steph, I just looked through the photos of James' last hospitalization and it brought so many tears, and so many memories for us, too.
I really am so glad that you have found an "outlet" for keeping the memory of James alive through the help you can offer to other parents going through what you went through. I wish I had some way of doing that- no one seems to want to talk about Amryn and Rachel anymore, but I still do!!
I also understand your need to throw yourself into the grief. I just read a book about a man who lost his wife, mother and daughter in an accident, and at night he would listen to sad music, pull out the albums and let the tears flow, just to get it out of his system. I found that strange at first (why torture ourselves?) but am more and more understanding the need to let it go sometimes.
We should talk soon,
Lisa

HH said...

Steph,
I went through your albums of James a few nights ago and I was brought to tears as well. Such a gorgeous little boy.
Let your emotions do whatever they are telling you to do. May God's peace continue to surround you.
Big hugs,
Helen

Kevin and Amy said...

Steph, it is so hard to know what to say... Any words I can offer will not take the pain away, especially coming from someone who doesn't know the pain first hand. We continue to pray for you and your family, and that is all we can do.

I also really like the albums you added to the blog. So comforting to know he will never have to be ventilated or in a hospital ever again.

It means a lot for you to share small steps of your grief journey with us, even though you are not a "public" person. Thank you!

Anonymous said...

Thank you for sharing the album of James' last hospitalization. As others have said, they brought tears to our eyes.

We are so glad that you are able to share James' story with others whose children are afflicted with the same problems that James had. Surely you are a blessing to them!

It is our prayer that our heavenly Father will continue to strengthen all of you.

You remain in our thoughts and prayers.

Arend and Willa Dale