"Well"
Hi Everyone,
Last night Grace was stable, Ian doing from midnight to 5am and then I took over at 5. Today she seemed a little worse than she was yesterday in the morning/afternoon and then picked up at night asking to be brought downstairs and she sat in my arms for 10-15min which was wonderful. The doc came this evening instead of in the morning due to plans with her daughter, but this evening said that she was surprised with how the week has turned out. She said last week this time when she was advising us to make sure we had "everything" in order prior to the weekend, she would not have guessed (due to Grace's deterioration from mid to late last week) that Grace would still be doing this "well" today. Of course I took this opportunity to ask if we needed another scan to ensure that Grace was still considered palliative and she assured me that it was not reasonable to believe otherwise and she knew I knew that in my heart... true but as mother I had to ask. But, believe me when I say "well", we are still living devastating circumstances, far from enjoying the Grace that so many of you know. She is still in bed 24 hours a day, rarely opens her eyes and when she does she is extremely cross eyed and today she lost muscle control of her neck so now when we do pick her up it is once again like handling a new born. But "well" in our world today means stable breathing, stable heart rate, good bowel sounds and still occasionally interacting with words. So today she is "well". However this afternoon we did have a scare as she slept. Her breathing became unstable and Ian and I shed tears and watched over her praying that we were not living the moment that we have been fearing. Although living like this is exhausting, I will do it for as long as it is granted to me given my baby is free of pain and content. This is why... tonight, as I finished singing her to sleep (or I thought she was asleep) out of the silence I heard "nite, nite, Mama", I then replied "nite, nite, baby" she then replied "nite, nite, Mama" and this continued back and forth until we had each said it 11 times. Again I am filled with strength to handle the next medical crises. Ian also told me that earlier tonight as she lye in bed, she lifted her little left arm, pulled the corner of Pink (her favorite blanket) over her eyes (balance of body still exposed) and then in her sweet voice said "Where's Grace Dada?" Again Ian is filled with strength to handle the next medical crisis. This is hard to admit because in my eyes she's perfect, but I have to confess that she's never been good at "hide and seek".
Bless her sweet heart.
Les
Last night Grace was stable, Ian doing from midnight to 5am and then I took over at 5. Today she seemed a little worse than she was yesterday in the morning/afternoon and then picked up at night asking to be brought downstairs and she sat in my arms for 10-15min which was wonderful. The doc came this evening instead of in the morning due to plans with her daughter, but this evening said that she was surprised with how the week has turned out. She said last week this time when she was advising us to make sure we had "everything" in order prior to the weekend, she would not have guessed (due to Grace's deterioration from mid to late last week) that Grace would still be doing this "well" today. Of course I took this opportunity to ask if we needed another scan to ensure that Grace was still considered palliative and she assured me that it was not reasonable to believe otherwise and she knew I knew that in my heart... true but as mother I had to ask. But, believe me when I say "well", we are still living devastating circumstances, far from enjoying the Grace that so many of you know. She is still in bed 24 hours a day, rarely opens her eyes and when she does she is extremely cross eyed and today she lost muscle control of her neck so now when we do pick her up it is once again like handling a new born. But "well" in our world today means stable breathing, stable heart rate, good bowel sounds and still occasionally interacting with words. So today she is "well". However this afternoon we did have a scare as she slept. Her breathing became unstable and Ian and I shed tears and watched over her praying that we were not living the moment that we have been fearing. Although living like this is exhausting, I will do it for as long as it is granted to me given my baby is free of pain and content. This is why... tonight, as I finished singing her to sleep (or I thought she was asleep) out of the silence I heard "nite, nite, Mama", I then replied "nite, nite, baby" she then replied "nite, nite, Mama" and this continued back and forth until we had each said it 11 times. Again I am filled with strength to handle the next medical crises. Ian also told me that earlier tonight as she lye in bed, she lifted her little left arm, pulled the corner of Pink (her favorite blanket) over her eyes (balance of body still exposed) and then in her sweet voice said "Where's Grace Dada?" Again Ian is filled with strength to handle the next medical crisis. This is hard to admit because in my eyes she's perfect, but I have to confess that she's never been good at "hide and seek".
Bless her sweet heart.
Les
posted by Lesley at 8:48 p.m.
1 Comments:
Les & Ian, thank you for continuing to share your (Grace's) story. It shreds the heart a little bit more with every entry I read, but I can't imagine not reading. Please know that I am thinking of Grace and praying for you all. Blessings and love, Cathy Marostica (Karen's friend)
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