Thursday, August 31, 2006

"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

10 Comments:

Blogger Lindsey said...

Your strength amazes me. I have felt helpless and useless throughout this struggle that the 3 of you have had to endure. Please know that my silence has not meant you are not in my thoughts, because you are daily. If there is anyhting, ever so small, I can do, please let me know.
Linds

8:15 a.m.  
Blogger Cathy Marostica said...

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)

9:17 a.m.  
Blogger KarenG. said...

Even tho we cant be there in person Lesley, our love and prayers are with you.

Karen G and Family

9:22 a.m.  
Blogger Bowens said...

Ian and Lesley...your strength amazes me during this difficult time. I can't help but pray every night for you and Grace and hope (that when I wake up to read your new comments) that Grace is still with us. Please know that my thoughts are with you always. May God bless your little angel. Angela Bowen - co-worker of Ian's

10:24 a.m.  
Blogger Kristee said...

Lesley, Ian, and baby Grace, You don't know me but I feel as though I know you all. I heard about your story through Grace's physiotherapist Lisa. I have been following with a heavy heart and tears in my eyes, and I continue like you to pray for a miracle for Grace. Just know that your story has touched many people friends and strangers alike. Every day is a gift, enjoy the small things - they mean so much.
Sincerely,
Kristee

6:15 p.m.  
Blogger James Dominick said...

Dear Lesley, Ian and Grace,
This is James Dominick (Dawson Dominick's brother)and family. We heard about your struggle from Josee. I have a 5 year old sister Bella, so I am a big brother to two! Your daughter is beautiful!! We are praying for your family as hard as we can. I remember how much it hurt to see Dawson go through his illness. We don't know what to say to offer comfort but we send our love and prayers and are praying hard for a miracle for your wonderful family. Thinking of you tonight before bed and sending you a giant electronic bear hug! Love, James and family

9:23 p.m.  
Blogger James Dominick said...

This comment has been removed by a blog administrator.

9:25 p.m.  
Blogger James Dominick said...

This comment has been removed by a blog administrator.

9:35 p.m.  
Blogger James Dominick said...

This comment has been removed by a blog administrator.

9:40 p.m.  
Blogger Paula said...

Dear Lesley, Ian & Grace,

My name is Paula (friend of Jenn DePaz) and I have been following your story from the beginning. I know Grace from St. Elizabeth's (Gavin's classmate), and know she is a very sweet little girl. I really wanted you to know, that although Grace only attended school for a short time, she has touched our hearts in a big way. I pray for your family's continuing strength and Grace's comfort.

Paula

11:49 p.m.  

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