Tuesday, December 7, 2010

How it is...

Lucia's health within any given day has been so variable from one moment to the next.  In a single day, she can go from being her perfectly calm, sweet self with great colour, excellent heart rate, a beautiful cry to a completely hysterical little baby with an unusual cry, very pale/bluish even, with a heart rate that goes through the roof, and a breathing rate that way exceeds normal.  It's the kind of roller coaster ride I don't wish upon anyone.  These past few days -- and really as I look back -- I would even go as far to say these past few months, have been like this.  Needless to say, we are exhausted and much more importantly, so is poor little Lulu.  In fact, she doesn't really sleep (this is a horrible thing considering that this is what babies are supposed to do for a good part of their day).  The most she will get is 2 hours at a time, and this is a blessing when it happens.  Also, she has lost so much weight because of all the work she is doing just to breathe.  Her lungs continue to fill up with fluid, and the nurse says she hears alot of wheezing.  The weight thing especially (among many other things) really breaks my heart because she was doing so well before this all happened.  Anybody that saw her that truly knew what T18 "looks like" woud tell me that Lucia looked GREAT...and I would beam with absolute pride (the good kind).

It is heart wrenching to watch her suffer and so we beg for Christ's mercy to take her suffering away.  Please continue to beg Him with us.

On a  final note, I know many of you have only seen pictures of Lucia, so I took a video of her yesterday morning when she was being her delightful self so that you, too, can experience the joy of our little sunshine.  (p.s. please don't mind my high-pitched, whiny baby voice...it may be annoying, but Lulu likes it  ;)  )



  1. Ramia,

    Everyday I pray that Lucia will be relieved of her pain. I pray that you, Father Anthony, and the rest of y'alls family will be comforted, that the Lord may have mercy upon you guys. Remember that I will continue to do so. Brad doesn't even know what he is missing out on;)Lucia is so BEAUTIFUL. Just like her mommy:) I love you.

    Wearing the ribbon with pride,

  2. HABIBTI LULU!!! So Beautiful.

    Lord have mercy.

    Tony F

  3. She is soooo beautiful. So cute! She just melts my heart.

    Love to all of you, and prayers always...

  4. What a beautiful girl! I love the way she raised her eyebrows. Thank you so much for sharing.

    Continuing to pray.

  5. Ramia, I am a friend of Gigi's from waaaaaaay back when. We were in 1st grade together and continued all the way through high school. She posted a link to your blog on Facebook last week. As a mom, I love to read anything baby. I read one blog entry and then, through teary eyes, read the rest. I check back every day, knowing good news is probably too much to expect but hoping to see news of a peaceful, happy day. Like most parents of healthy kids, I forget how lucky I am that my son has a body that works. Since reading your story, I don't forget anymore, and I have you and Lulu to thank for that. I hope you, Anthony, and Lucia find comfort very soon.

    Jennifer Davidow

  6. She is so precious! May God grant her strength and relief from pain. We will continue to pray. The video is adorable. I also watched the video of the churching, which was just beautiful. May God give you all peace during this time.

  7. Thank you so much for sharing this. She really is very beautiful. My heart breaks as I watched her working so hard to breathe; I recognize those chest movements. We continue to pray for all of you daily. I wish there was something else that we could do to help. May God continue to give you the strength that you need to bear this. We love you and miss you all.

  8. Oh my dear Kh. Ramia, Your little Lucia is SO BEAUTIFUL. She is so aware of you and is trying so hard. She is quite the little communicator, despite the challenges she is having! We are praying here and we always remember you and Lucia in every prayer service. My continued love and prayers. You have such a beautiful little girl and she is blessed to have you as her Mother!

  9. Ramia, thanks again for sharing...I loved the video! Praying for you all daily...
    With Love,

  10. So beautiful!! Love all of you so much- and am praying for you!! God bless all of you and give you strength!

    Michelle Morrow xoxoxo

  11. What a sweet video, Ramia! Thanks for sharing :) we continue to pray for you all.
    Much love, Crystal

  12. Lulu looks as beautiful as ever,enjoy every moment with her. We miss you both so much and continue to pray for his mercy.

  13. No words yet she communicates so much: strength, determination, love. She has so much depth to her, like she knows this mystery that none of us will know. It's not something i can even explain, just a sense.

    I love the way she is moving her mouth! Ya deenie!

  14. She looks just like daddy! We all gather around and pray for your family daily. We love you all!

  15. Thank you for sharing your sweet baby girl! You take such great care of her, it shows! Much love to you all from the Thurmans!

  16. It's so good to see her again! I think your 'baby-voice' is beautiful, btw. Keep it up.
    Continued prayers-L

  17. She is so beautiful! What an angel!

    You and I have never met Ramia, but I know Fr. Anthony from the Village and now that I have the link I will be following your blog. You and Fr. Anthony and precious Lucia are in my prayers. May the Lord grant you strength and peace.

    Much love,

  18. How darling she is - and your voice is just as sweet - what an incredible mother you are.

  19. Lucia is beautiful and lucky to have such an amazing mother in her life! We pray for God to heal Lucia! You are constantly in our thoughts and prayers,

  20. No words uttered could comfort you, except the words of our lord, that the children will inherit the kingdom of God!
    You know when you ask her what she wants to say to everybody, it looks as if she's forming the words "I love you!" you probably know all her beautiful words and expressions very well...
    Lucia IS Love, and in God's love we trust Ramia. May our Lord have Mercy!
    On a side note, Happy feast day to Lucia :) I just read St. Lucia's life and its most "enlightening". I felt like sharing this tidbit...
    "Saint Lucia was from Syracuse in Sicily, a virgin betrothed to a
    certain pagan. Since her mother suffered from an issue of blood, she went with her to the shrine of Saint Agatha at Catania to seek healing. There Saint Agatha appeared to Lucia in a dream, assuring her of her mother's healing, and foretelling Lucia's martyrdom. When her
    mother had been healed, Lucia gladly distributed her goods to the poor,
    preparing herself for her coming confession of Christ."
    I couldn't help but draw some parallels...forgive me...
    With all my love and prayers,

  21. Just wanted to wish Lucia a happy Names Day today!! :)