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!

Friday, May 13, 2011


I have been contemplating an idea a friend has given.  You see, I have quite a few items of Joel's clothing... more then could fit in the size of memory box I was planning on.  And I am finding I have a great reluctance to give any of them away.  They are so much more tangible, as reminders of my son, then just a picture.  Not that pictures are not super or precious.  I'd never give one of the pictures up!

But clothing can be held and felt.  There are memories in it.  But I know in my mind that a box of clothes just sitting in a quiet corner is only taking up space, getting musty, and it's not something you are going to pull out every day for the rest of your life either.  It's not practical.  Not that I think practical is the be all and end all of things.  I can be very unpractical.  Still.  It's a lot of clothing that I can't seem to get rid of.

In fact, I am resisting the urge to ask some of the people whom I gave/lend Joel's clothing to, to give said clothing BACK.  I had some really amazingly nice and cute clothes from his first year of life, and I (maybe wisely) made sure to lend it out as soon as I could.  Most likely the said people don't even have the clothing anymore, most likely they in turn passed it on, or can't remember where it is, etc.  So I am trying to not even GO there.

My friend gave me an idea.  It is a good idea.  She said she knew someone who made a quilt from her child's clothing, after he died.  Now that seems like a perfect solution.  A quilt, which could wrap around me and be felt at any time without sitting in an awkward box.  Useful, and sentimental, all at once.

So I am mulling it all over.  There are a few slight difficulties.  First one being that I'd have to steel myself to cutting up Joel's clothing.  For some reason, this seems hard.  Taking a scissor to his jammies.  It's a point of no return.  Points of no return are hard these days.

And Joel being so small and so young, his clothing is small, and covered in small child stuff.  Dinosaurs, cute aliens in spaceships, cars, and Cookie Monster.  I want it to be MY quilt.  But I sure do want to keep these emblems of my son's baby/childhood.  So this quilt would not too likely be a real "display" sort of quilt.  But then, not sure I want to display it either.

And the colours.  My favorite clothing is red, brown, black, green, and many shades of blue.  Not too sure about the final colour scheme there. 

Or how to work it out practically when some of the clothing is small, and some is larger.  So I'd have make some squares out of two pieces of fabric... and though I thought I had a lot of clothing, when arms are too small to provide fabric, and sometimes legs too, in the end, this quilt might NOT be that big.

But I think the result might be worth it... and maybe cutting up the clothing would be worth it too.  I'm pretty sure I'd be crying as I chopped up the pieces with my scissors.  That sounds painful.  But not necessarily bad.  Sometimes pain is what you go through to get a beautiful and meaningful quilt.  Just like sometimes pain is what you go through to get experience, compassion, and memories.  No love without pain.  No quilt without cutting.  So it is.

I don't know why I like the picture of him with his CPAP machine on, but I do.  It's not the cutest look, I guess, but the sight of him happily drowsy/sleeping with the machine on, the one that let him have such good health and happiness for so long, well, it's a cute picture to me, anyway.


  1. I love the quilt idea. A woman in my grandmother's retirement home had a quilt made of all her deceaced husband's old clothes. It was not for display...it just went between her sheet and her comforter and she got to wrap herself in it every night. She was kind enough to show us....and although the clothing was never intended to make a nice looking quilt...you would be suprised how beautiful it was. I know cutting up Joel's clothes may be difficult...but I bet you, even with different sized squares and smaller ones and funny little prints...the end product will suprise you at how beautiful it will be.

    I actually love the CPAP photo too...I can see how relaxed and comfortable he is and I think he is super cute.



  2. Instead of cutting up all the clothing, could you applique it - at least some of the smaller pieces - onto squares (denim, for example)?

    I have done quilts this way. The squares can be fairly large - you could cut some of the larger pieces onto a template. I did a quilt for my daughter this way, using the design for Sunbonnet Sue and Overall Bill. You can probably get the templates online or create your own.

  3. Karen,

    If you decide to have a quilt made, I know that it will be beautiful and be an amazing thing for you to snuggle and hold.

    I have to admit that although Ethan is still with us, I am considering doing this with some of his clothes from his first year of life. I can't believe he is already 9 and 1/2 months old. I want to make a full size one for me to hug and cuddle, in case Jesus needs Ethan sooner than I am ready to let him go.

    Love and prayers from your sister in Christ,

  4. Years ago I made a quilt for a momentous occasion for a family member. At that time we could take photos and iron transfer them onto fabric. The flaw was that it was not washable or if you washed it, the pics would fade so it was more of a wall hanging than a useable quilt. However, maybe check with a local fabric store or online and see what technology is now available for transferring photos onto fabric. I'm sure that it's improved since then so then you can have a useable quilt that has not just pieces of articles of clothing but your favorite pictures as well. You could use pieces of clothing as the blocks around the pictures. Memory quilts are a beautiful idea!

  5. A quilt is a beautiful idea. My mom made a quilt out of my son's clothes after he passed away. It's the perfect size to cuddle up in and we have it in our living room. We often fight over who gets to use it! I wasn't able to even think about cutting up the clothes myself, which is why my mom took on the task. Even for her, it took almost a year before she could make herself cut them up. But the end product is a perfect keepsake, something tangible and comforting.

  6. Totally LOVE the quilt idea! Don't know that I could cut up Graham's clothes though. But...thankfully for me, David gets to wear all Graham's things and he is just now getting into some of the last things Graham wore. I think I like the picture transfer idea. Some neat memory ideas to toss around though.

    'Angel' Graham's Momma