Our peach is gone!

To say that this has not been one of the longest days of our lives is an under statement. Sasha was so uncomfortable in the morning and with the help of Dr. Goldman and some drugs, we were able to make her more comfortable. She was able to rest comfortably and I waited until the drugs wore off to see if we could somehow connect, maybe lie side by side and play. Unfortunately that just never happened. She woke briefly while still working very hard and I gave her some more meds. Lorna came up to visit and Jonny was with her too. I could hear them singing to her and then her take several large gasping breaths. I went into the room to make sure everything was alright and they continued singing. I was in the office and Lorna came up to me and told me she thinks that Sasha had passed. I said that it was impossible and ran into the room when I immediately noticed the lack of life in my peach. I sat next to her and sobbed and kissed her. All I could think about were all my tasks for the evening: prepare TPN, change ostomy and make Sasha comfortable.
From that moment forward, family and Dr. Goldman came by the house. We made arrangements for Sasha to be picked up and when they took her it was very strange seeing her lie in a truck gripping onto her pacifier and baby raggedy and poof! she is gone.
Walking around the house without her sounds and screams is strange. Wanting to touch her and feel her weight on me makes me ache. As I pace around the house, not sure if the pains in my belly are contractions, I enter every room only seeing Sasha. Going to bed tonight knowing I won't hear her vibrant voice makes me so sad. In so many ways I wanted Sasha to meet her sibling and have that moment. We tried so hard for her to experience as much as she could and I wish the last 6 months could have been so much easier for her.
I have missed Sasha for months and now I don't know how I can move forward without her.


  1. Anonymous11:49 PM

    its steph in montreal

    no words, just heartache for you and jonathan and all the stein blumbergs and extended friends and family.

    a candle has burned since i heard.

    sending all the love and strength i can, in an attempt to mirror all the love and strength that flowed between you and your daughter...i pray it continues to feed you through every minute of every day.


  2. Anonymous12:39 AM

    No words can explain the ache that I feel inside me.I am speachless yet I have so much I want to say about our beautiful Bella.

    I had the wonderful pleasure of being there to see Sasha enter this world-and now we have to say goodbye.Her smile will always be in my heart.Her voice always in my ears.Her sweet little kisses always on my lips.Her being will always be with me.

    Pammy and Jonny-we love you!As I go to sleep tonight-my thoughts are with you both.


  3. Anonymous2:40 AM

    Hi Pam and Jonathan,

    You don't know me personally, but I am a member of the Alagille web board and have been following Sasha on your blog since your first post of her being home. My name is Kimberly and I have a almost three year old daughter with Alagille. There are no words I can say to comfort you right now. I just want you to know that you are in my thoughts and prayers. Sasha is a beautiful little girl who I know has brought many smiles. I will continue my prayers for you and your family.

    God Bless,


  4. Anonymous3:37 AM

    What a time of beginnings and endings for your family. I am, however, relieved for Sasha. She has been a feisty, joyful little girl, in spite of the hand she was dealt. But her work is done. She has made your family an even stronger one and has set an example that encourages all of us to value life and look beyond the silliness of day-to-day frustrations and, relatively speaking, minor challenges. Pam and Jon; you have learned, in a very short lifetime, with Sasha’s help, what many parents take much longer to realize. Sasha’s enduring gift to little Mia, and indeed to all of us, was to demonstrate that life is to be enjoyed, for whatever term it is granted. Although her wee light has gone out, her afterglow will continue to illuminate the lives of those who loved her.

    Know that we are thinking of you all.

  5. Anonymous7:23 AM

    I can't decide whether Mia held the door for Sash to leave or Sasha held the door for Mia to enter, but clearly they must have crossed paths. I'd like to think that in a quiet, otherworldly anteroom these sisters privately beheld one another. Pam, perhaps you got your wish after all.

  6. Anonymous7:31 AM

    hi pam and jonny, i wish i could be there in toronto but luckily anita will be there for the 2+1 of us. i am deepenly saddened by sasha's passing. i hope you know that my heart and thoughts are with you.

  7. Anonymous10:52 AM

    Sweet Sweet baby Sasha, you are finally done. Mommy and Daddy - our hearts break with you. We lost our little Emma who also had alagille just 6 months ago. We too are pregnant, and having contractions this very minute. What encouragement can I give to you? A part of me feels that because we have walked through this I should know what to say, and yet because we have walked through this we know all too well there is nothing that you can say to cause the pain to leave. My prayer for you today is to simply be able to breathe, to walk, to somehow make it through the day until tomorrow. My only comfort I had when Emma left us is that FINALLY FINALLY it was only us hurting. While we had her in our arms EVERYBODY hurt, but she did the real hurting. Today, 6 months later I am sooooo thankful that we do the hurting, not her. My heart is so confused these days because of our new baby on the way. I can't even imagine how confused you feel. I would love to talk to you one day, in your own timing, if you would ever like to. We have been through so much of the same, our girls had so much in common, we are both having babies at the same time, and we have both lost our greatest gift. My email is mikeandsummer2003@yahoo.com if you ever need to talk.

  8. Anonymous11:19 AM

    Dearest Pammy and Johnathan,

    I share in your sorrow, even though my emotions must only be a shadow of the depths of your feelings.

    I admire with amazement and compassion your ability to be selfless in this situation - thinking of Sasha's comfort and that she suffers no more...

    Sasha can only be a very special soul to have touched so many people so deeply in such a short amount of time. She is so lucky to have you as parents. Imagine knowing nothing but kindness and love for your entire life?

    No words can describe my sincerest sympathy and respect I have for you. I'm looking for the magic words to make you feel a bit better, if only for a moment, but truly I don't think these words exist. I can't stop thinking of Jack Johnson's "If I Could" lyrics....

    "Down the middle drops one more
    Grain of sand
    They say that
    New life makes losing life easier to understand
    Words are kind
    They helped ease the mind
    Of this, my old friend
    And though you gotta go
    We'll keep a piece of your soul
    One comes out
    One comes in"

    I wish peace for your hearts.

    Much love,
    Leigh xoxoxoxoxoxoxo

  9. Pam and Jon-
    Though I don't know you well and only briefly met Sasha once, I want you to know (though I'm sure you already do) that Sasha touched those beyond her immediate experience. She must have been special to touch so many people, even peripheral ones like me. I was so happy to learn that Russell Goldman, one of my favorite people, was her palliative care doctor, and I know she was in good hands. I hope to make it by the house later this Thursday with Meredith.

    Love, Judith and Ryan