Acceptance…With A Bit of Humor

On Friday, September 16th, at 10:10 AM, Heather passed away. She was in the company of her parents and their pastor. The tubes and equipment were all removed at 10:05 so my brother and his wife had 5 minutes to hold her for the first time in years without the obstruction of wires and tubes. Within those few minutes they managed to get some touching photographs of Heidi holding Heather (which I hope to post here next week). Heather actually looks like a perfectly healthy sleeping baby girl in each one. Unfortunately, as the series of photos progresses, you can tell when Heather starts to die as Heidi’s face changes gradually from sadness to utter devastation. It’s just like looking at movie stills – each image getting more and more horrific (I won’t post those here).

I arrived at the hospital shortly afterward to drive them back home. My parents left the Cape and brought my niece and nephew back to my brother’s house. Shortly after their arrival, Heidi and Paul asked the kids into the living room to tell them the news. Before the talk could begin, 6 year old Katie asked where Heather was. When Heidi said “Nick, come over here so Mommy and Daddy can talk to you”, my 7 year old nephew responded by saying “No thank you. I need to go into the bedroom to do some work.” (Nick has an entertaining way of saying things).

He definitely sensed something was up and wasn’t ready to discuss it. As everybody started bursting into tears, I heading into the other room to compose myself and to see how Nick was doing. Without hearing the news, he already knew what was going on and was already crying.

After a while, he came out to hug his mom and dad. As we all were wiping away tears, Nick stopped crying, looked at his mother and asked “Does this mean I get my bedroom back?”

That was a typical thing for Nick to say…and it was exactly what the rest of us needed to hear. We all burst out laughing and it lightened up the mood.

The funeral will be on Wednesday and for those readers who know her (and my family), I wanted you to know that a fund is being set up through the Mitochondrial Disease Action Committee (to assist other children and families suffering from this disease). If interested, checks can be sent to:

  • MDAC
  • in memory of Heather Coleman
  • 14 Pembroke Street
  • Medford, MA 02155

While with family, I discovered this rare picure of Heather smiling and reasonably healthy. It was taken over a year ago when she was actually able to walk (with foot braces and a walker). You can see the book bag on her back (which held the machines required to feed her…you can see the tubes sticking out of her shirt).



  1. Comment by Sara on September 18, 2005 9:02 pm

    I am so sorry Karl. Make sure you take care of yourself.

  2. Comment by Ronnie on September 18, 2005 11:24 pm

    Hugs buddy, always, Ronnie

  3. Comment by Will on September 18, 2005 11:38 pm

    Karl, my condolences and warmest thoughts to you and all in your family.

  4. Comment by Bryan on September 19, 2005 12:52 am

    You have my condolences as well. May she live on forver in your hearts.

  5. Comment by karyn on September 19, 2005 9:37 am

    As you know, your family has been much in my heart & thoughts these many days. There’s not much else to say; you know how I feel about this, and that I am here for you. (P.S. Don’t you tell me what I can and cannot handle.) There is much love here.

    Heather brought a lot of people to the depths of despair along her journey, but also to the height of goodness.

    It will be important, and even possible, in times ahead to focus not on the circumstances of her illness and that she died…but that she lived.

    Much love, as ever, snarling.

  6. Comment by Robert on September 19, 2005 11:19 am

    Maybe you did, but I don’t recall you posting a picture up of Heatherb before. Thanks Karl. It’s heartwrenching to see, and what a beautiful baby she was. I’m imaging now she’s taking a nap, just to get ready to finally get to play with other babies like herself.

  7. Comment by Brad on September 19, 2005 12:09 pm

    This picture of Heather is exactly the way you should remember her. It’s really a wonderful way to remember such a sweet child.

  8. Comment by David on September 19, 2005 1:30 pm

    Oh, Karl…
    I just read this today.
    I’m so sorry. Again you and your family are in our prayers.

  9. Comment by Mark on September 19, 2005 3:31 pm

    Hey Karl,

    I just got back from VA. I’m so sorry to hear about your loss, but at least now the healing can begin. You have my sincerest condolences.

  10. Comment by Erica on September 20, 2005 3:44 pm

    Hi Karl,
    Brad told me about Heather on Friday morning, and I’ve been thinking about her and your family ever since. I hope it is some extra comfort to know that, as she passed, Heather had a lot of people thinking about her and wishing her peace. It still makes me so sad and angry to think how short a time she had here, but it’s beautiful to see how much she was loved. And whater you or your family feel about the possibilities of afterlife, I do think she is free and at peace now, cheesy as that sounds. I actually learned on Friday, unrelatedly, that one of the symbols of the heather plant is a bridging of two worlds, the spiritual and the mundane. For a child whose life was so brief yet affected those who loved her so profoundly, that seems really appropriate.
    love, Erica

  11. Comment by Jay on September 30, 2005 5:48 pm

    Honey, I’m so sorry. I know this has been very tough. You’re in my thoughts.

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