Friday, February 28, 2014

The sad story

It is hard to relate the story of the day everything changed in our lives. It is painful. There are images burned into my mind that will not go away. I expect they will be with me for some time. It is not the way I want to remember Maggie and I look forward to different images replacing these. But I am going to share it because it is important and because so many of you loved Maggie too. 

Maggie did not suffer. For that I am grateful.

 She was in her bed with her nurse at her side administering medication. Something happened - we will never quite know what. The best guess is that something plugged off her trach causing her to stop breathing. The nurse started screaming for help and I ran downstairs to find her working frantically to help Maggie. I took over, but nothing helped. She was just lying there. The nurse called 911 and got Steve.  I started compressions, but I felt like a chicken flapping my wings. Steve took over on the phone giving me instructions from the dispatcher while we waited (and waited and waited) for the paramedics. It seemed like it took forever, but of course it didn't. They came in and took over. They worked and worked. Steve and I held onto each other and watched in horror. They worked for ever. Finally the head paramedic said, we will work for five more minutes, but then there's nothing more we can do. I wanted to tell them to stop. I knew it was too late. It had been more than 30 minutes. I said it to Steve, but I could not make my mouth say the words to the paramedics. Just when they were ready to stop, they got a pulse.

 I quickly put on some clothes and got into the ambulance with them. Someone helped me into that ambulance and fastened my seatbelt and I sat there for a minute waiting for the driver to get in. I could not see Maggie but I could see the guys working on her in the back. the driver got in and was ready to go but one of the guys in the back said, wait, let me make sure I still have a pulse. I could not believe what was happening. We drove to the hospital with lights and sirens and I was struck by how muffled the sound was in the truck and by how very very long it seemed to be taking to get there. They whisked her into the trauma room and a crowd of medical workers descended on her. Steve arrived within about a minute and we stood out of the way in silence. A nurse came up next to us and said if we need anything at all to ask her. She said her name was Joy. i stared at her but said nothing. Joy. Wow.

Maggie wasn't in the ER for long. We went right upstairs to the PICU, a place we have spent many many days in Maggie's life. I knew the people in there. The doctor covering the ICU was straightforward and kind. After a very short amount of time she looked at us and said simply, "This is a fatal injury." 

The staff in the PICU and in all of the hospital was really amazing. It was our darkest day and they were so helpful and kind. 

Maggie never regained consciousness. Really, she was gone by the time I reached her bedside that morning but she came back briefly so we could say goodbye.  We called the boys. Tim arrived quickly and Eddie made arrangements to fly in from Orange County. It was sad and unbelievable. We all knew what was happening and we faced it together. We said our goodbyes to the heart of our family, the heart of all of our lives.

I feel very honored by and grateful for the amazing outpouring of support and love that my family has received since February 15. I also feel very honored and graateful to have been Maggie's mother and to have shared her amazing life. Maggie's spirit was - and is - so strong we could not contain it. It touched everyone she met, including those who know her only from this blog. The world would be a better place if there were more Maggie''s in it. 


  1. Thank you for sharing. For some weird reason its comforting to know what happened to our girl, and especially comforting to know she didnt suffer.
    Rest in peace lovely Maggie...

  2. Thank you for sharing this... Maggie has been so much on my mind lately. You did such a wonderful job of sharing her life through your blog, that I felt as though I knew her... checking in on her antics has been a part of my daily routine since I first saw a video of her requesting some music (I think 'all the single ladies') on her dynovox... her humor and her determination were a joy to witness. It is comforting to know what happened... to know that she didn't suffer, and that you were not forced to make hard decisions... that you were with her.. I hope it is comforting to you to know that she touched the lives of complete strangers and that we are feeling some small measure of your loss... that she is missed.

  3. Sally, I was a BBF Home Counselor for several years before moving to Australia. I had the pleasure of meeting Maggie and you at several BBF events, and have so enjoyed reading your adventures in this blod.

    I am so very sorry Maggie has left this world. As you know, she has brought so much joy to so many. She is a true pioneer.

    I will light a candle for Maggie and your family.

    Kind regards,

    Elizabeth Bates

  4. Yes Dear Sally, this world would be a much better place with more Maggies in it. Maggie's light will live on in the people who knew and loved her. Shine on sweet Maggie--Shine on!

  5. Thank you for sharing these details of Maggie's last hours. I can't imagine how difficult the telling is, and I will hope for the vision of her as you knew her before to gently replace this one. I miss Maggie -- her light on the earth, emanating from her to you and then to us.

  6. I'm thinking of you Sally, and I hope that writing this all down and sharing with us here will allow those other images of Maggie that you treasure to surface and provide some comfort.


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