I have such trouble sleeping now, once all of the day’s noise and distractions are gone and I’m left to my own devices. I can’t fall off into slumber within minutes, or deep breathe my way to dreams. What I do is lay in the darkness and think. And think some more. And before I know it all I want to do is sob, or rip away the part of my memory that haunts me. The last moments with Sadie pervade every other beautiful thing I try to remember about her. I suppose this is grief? What I do know is that up until now I’ve been utterly naive about just how much horrifying pain one person can hold inside.
.::.
“Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle (myocardium), is abnormally enlarged, thickened and/or stiffened. The condition typically begins in the walls of the heart’s lower chambers (ventricles), and in more severe cases also affects the walls of the upper chambers (atria). The actual muscle cells as well as the surrounding tissues of the heart become damaged. Eventually, the weakened heart loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.”
“Cardiomyopathy is nondiscriminatory in that it can affect any adult or child at any stage of their life. It is not gender, geographic, race or age specific. It is a particularly rare disease when diagnosed in infants and young children.”
We were the goddamn needle in a haystack.

15 comments
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May 8, 2008 at 10:02 pm
Marilyn
I hate that needle and I really hate that haystack. It shouldn’t have had to happen to you. I’m so sorry.
May 8, 2008 at 10:28 pm
EWiller
Nothing could be more unfair.
May 8, 2008 at 10:35 pm
summer
hello, I’m not even sure how I came across your blog but I did and I’m so sorry for your loss (I’m sorry that is so cliche and there isn’t something of more meaning or depth that I can say but I don’t feel there is anything that can really be said that would touch this with the meaning it deserves, please just know that my sentiment however cliche is genuine.)
There is a site that was recently started that you may take some level of comfort in, http://www.glowinthewoods.com/home/
My losses were entirely different from yours and yet there is some sort of universal reality in the feeling of waking up from naivety and walking into a world that suddenly looks completely different from anything we could have imagined existed or ever wanted to know could exist.
You are in my thoughts.
May 8, 2008 at 10:53 pm
Steph
My heart aches for you and your husband. I can’t get over what happened and I am truly sorry for you. I can’t even imagine how you must feel and what you deal with daily. I only wish that there was some way to help you. {{hugs}}
May 8, 2008 at 11:04 pm
Jess
My heart hurts for you daily. It’s strange, i don’t know you but i think about you often. Pray for you and wonder how you’re doing. Know that there are people out there who are sending good feelings your way especially when you can’t find any for yourself.
May 8, 2008 at 11:36 pm
Connie
It is so unfair for such a beautiful, wonderful baby girl to have such an unforgiving, cruel disease. You are in my thoughts.
May 9, 2008 at 12:02 am
candicelmartin
It doesn’t help now, but eventually your mind will remember the sweet moments first. You won’t really notice the change when it begins, but one day the memory of rocking your precious child to sleep will surprise you because you realize it is the one that comes to mind first. Right now it is sheer horror to think that life could even go on that far. That is sometimes the cruelest part of it - that life for you does go on.
I am praying for you, still. I know the path you are walking and I know every inch of it cuts deeper into your soul. Your precious little girl is safe now, which doesn’t make it easier for you, but at least offers some comfort, if any can be found. I don’t know you, but I love you because my heart knows your pain and I will keep praying for you.
May 9, 2008 at 1:19 am
Sarah
If you need a distraction in the night… I am just a phone call away. I think about you often and worry about you more. May you always know that I think and pray for you and Stu. I hope where ever you are right now you can feel my arms giving you a hug. much love - sarah huizing
May 9, 2008 at 4:33 am
debbie
Candicelmartin is so right, you do eventually begin to remember the sweet moments first. It takes time, but I promise it does happen. I am so sorry that you, the three of you, were the needle.
May 9, 2008 at 7:22 am
Sarina
I’m so sorry Jen. We were the needle in the haystack too with our little girl. The stats and numbers and what ifs consumed me, and my nights in early grief were full of insomnia or nightmares. Then I became a reading maniac.
When you feel like reading, the books that I found helpful are:
After the Darkest Hour the Sun will Shine Again: Elizabeth Mehren
Empty Cradle Broken Heart: Deborah L. Davis
When Bad Things Happen to Good People: Harold S. Kushner
Echoes of the Soul: Echo Bodine
everything by James Van Praagh
I’d Rather Laugh: Linda Richman
Stillness Speaks: Eckart Tolle
The Prophet: Khalil Gibran
I wish you a path to peace. Thinking of you and Sadie every day.
May 9, 2008 at 5:29 pm
Heather
My heart aches for you, Jen. I think of you every day and wish there was some way to ease your pain or bring Sadie back. I can’t do either, but I hope you find peace. We’re thinking of you here and sending you love.
May 10, 2008 at 8:39 pm
tina
I haven’t slept with true peace since I lost my mother on December 31, 2004. That’s when the tears–and the nightmares–come thickest. I’m so sorry this is happening to you.
May 10, 2008 at 10:16 pm
Jen K.
I don’t know what else to say, but I am so truly sorry for your loss. Your baby girl was beautiful, I hope you can somehow begin to find peace. I check your blog every week or so, but I think of you and your family often. I don’t know if any of our words help, but please know you are thought about by more people then you realize.
May 13, 2008 at 12:04 am
Tamara
I don’t have any thing to say but that I’m hoping some peace and rest comes for you soon.
May 14, 2008 at 6:09 am
Katie
I was having a horrendous time dealing with grief last year. My therapist taught me about cognitive behavioral therapy, which is basically just the principle that ‘thoughts lead to feelings’. I was up, awake at night because I could not stop thinking thoughts that made me feel terrified and miserable. I have learned since then that I need to redirect my thoughts to something pleasant. This was very difficult at first, but has gotten easier with time.
Perhaps this kind of technique could be of some help to you. It will not take your pain away by any means, but it will help you go to sleep at night.
You are in my thoughts and prayers.