Tuesday, December 4, 2012

A Whole Week at Home

Bea has been home for 8 days now and is still doing quite well, all considering. She is by no means living a normal life but it's the closest we can get so we'll take it.

We've set up a hospital bed in the living room so that she's in the mix all day. She doesn't seem to have trouble falling asleep when she's tired so noise isn't an issue. And, this is the center of our annual Christmas decorating and we want her to enjoy the season as much as possible.

It is difficult to tell what she's thinking or feeling because her facial expression does not change significantly, except when she smiles. We have found that viewing old photos of herself does make her very sad so there's no more of that.

She's on a fairly regular sleep schedule, which is good for all of us. Chris and I are taking turns sleeping in the living room. Bea needs constant monitoring as well as a dose of Tylenol every 4 hours. So, it means someone has to be in the room with her pretty much every minute of the day.

We spend most of the day caring for her physical needs, reading her books, watching videos and having occasional visitors.

So, that's what our life is like today. I don't know what it will be like tomorrow. I usually don't even go there. I have today and try as much as I can to focus on that.


  1. Hi, I found your blog and Bea's story through a link from Oana Hogrefe. I have a little girl who is the same age as Bea. I just wanted to let you know that even though I am a stranger, I am holding Bea and all of your family in my thoughts and prayers.

  2. Even though I do not know you personally but I think we don't live far from you I have your sweet daughter the whole time on my mind and my prayers. I have asked my mom to pray for her she lives in the Caribbean.
    Sending you a big hug and know that many are covering you in prayers.

  3. I don't know you but have been following what you and your family are going through. I was at the Zumba fundraiser earlier this year and saw you and Bea. :) My heart goes out to you and your family. You are all in my thoughts and prayers.

  4. I'm so thankful you are getting this time together! Continued prayers. xoxo

  5. I cherish the artwork of Bea's that has been shared. My favorite is the one entitled "I will love." Such simple and beautiful wisdom. We do not know one another personally and yet I hold Bea and all who love her in my heart. I too am the mother of a 7 and 4 year old (+ a tiny tot). May moments of joy be yours today and peace come as a heaping helping as well. In hope, Kate Mosley (Decatur GA)

  6. We have not personally met, but I too am touched every day by the life of Bea, she is such a blessing to so many people and she may not even know it ♥

    I met Bex a few years ago and last year when I heard your story I was immediately touched, as I too have a 7 year old daughter. I think of Bea daily, I pray for her in my constant thoughts, I pray for your strength and I thank God "out loud" daily that she is still blessing you and your family with her lovely presence. Peace be with you ♥

  7. I am stranger too, who heard about Bea thru my daughter. I think Bea is changing so many lives thru your words; those have made me to think different about my family (wife and kids), sometimes one just give everything for granted.

    My (and family) prayers and thoughts for Bea.

  8. We are so happy to hear that you are enjoying the days at home. Tonight my daughter Riley delivered cards to your mailbox. Her homeroom class at North Cobb made the cards. The children hope the whole family enjoys the cards.
    The O'Neill's


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