Tuesday, November 30, 2010

A visit from the nurse

It has been a few days since I last wrote, and it's because Lucia's condition really hasn't changed drastically.  Yesterday, we received a visit from a very kind and compassionate nurse (a faithful Christian woman too), and she kind of put things in perspective for us.  We were starting to become hopeful again since being home, but the nurse confirmed in the most loving way possible that it's not looking very good for Lulu. 

Her health is deteriorating.  There is a very bleak flow of oxygen in her lungs and they are continually filling up with fluid (despite medication to counter this),  she is still feverish (a sign of her trying to fight the infection -- she really is a fighter), her heart rate is slowing down (probably getting very tired of all that hard work), she has lost quite a bit of weight and she isn't sleeping very well (the lack of sleep probably has to do with being unable to breathe deeply for very long).  She has been coughing as though she's been smoking cigarettes since birth -- really, it's shocking what kind of a cough comes out of her.  Her sweet cry is back, but is weaker than ever.  It still makes me smile because of its sweetness, but my heart aches at the same time.   She is somewhat herself at times - still swiping at that feeding tube and now the cannula.  Yesterday, she made my day when I tried to tickle her and she gave me a smile.  Most times though, she seems so beaten up by this illness.

The nurse put it beautifully yesterday...there are one of two miracles that can happen.  The first is a total healing miracle..probably the magnitude of Christ-raising-Lazarus-from-the-dead type of miracle.  The second kind of miracle is the one where Lucia goes to be with Jesus in Heaven.  I don't know how to describe the pain of even writing that out.  We know in our minds that this is what we all strive for...but our hearts have to experience the pain of death before getting to that perfect place, where "all sickness and sorrow have fled away."  We pray for a miracle, but only God knows which one we will receive.  Lord have mercy.


  1. You and Father Anthony are strong Ramia. And so is Lulu.

    Lord have mercy.

    Much love,

    Tony Foteh

  2. Praying for you all Ramia.
    Lots of love,
    Cindy Salib

  3. I am constantly praying for Lucia and her AMAZING parents. I love you all so much.

    Sending you a HUGE hug and lots of love.

    Your Cokester

  4. Oh my dear Kh. Ramia. This is so painful for you - understandably so. What a blessing of a nurse. We keep praying here and we love you and Lucia so much. Fr. M continues to remember her and you at every service. I will continue to let our Orthodox blog community know so that prayers will go out from many.

  5. We are keeping you in our prayers, and hoping for an amazing miracle, as Lucia's parents are truly worthy of it. Lord have mercy!
    Keep the strength, you are truly amazing and Lulu is so strong!
    Darine and family

  6. I was a nurse for 13 years and I've had that conversation more times than I remember. What a blessing she was compassionate. I'm continuing to pray for you all.

  7. Please know that your family is in our thoughts and prayers. The Lord is merciful and through Him alone are comfort and healing. May He be with your family through this incredibly difficult time.

  8. Continuing to pray for Lucia and your family.

  9. My heart just goes out to you. I cannot read a single entry without tears. I know what it is like to watch a sick child; I know what it is like to give an infant back to God; and I know what it is like to watch someone slowly fade. I cannot imagine all of those combined together. May God Grant you strength! We pray for all of you every day during our family prayer time. I wish we were there to hold your hand, give you a hug, and just be there.
    Our thoughts, prayers, and love for all of you.
    Cristinette, Bob, and the clan.

  10. Ramia,

    You, Father Anthony, and Lucia are in our hearts. We will keep praying. God grant you guys strength. May your soul find rest in Him. Ya Rabbu-rham.

    With love,

  11. All of you are constantly in my thoughts and prayers.

  12. Beautifully written, Ramia. Thank you for sharing with us, we continue to pray for healing, in whatever form that takes. And for comfort and peace. Much love. Kh. Rachel

  13. You are in our prayers! Lord, have mercy!

  14. Kh. Ramia,

    Father Anthony, Yourself and Lucia are always in my prayers. My family is absolutely heartbroken at the pain you all must be enduring. Lucia must be so strong. Thank you for sharing.

    May God Bless and Keep,
    Peyton Powers

  15. Our beloved Lucia, Ramia and Father,

    Our hearts are full of love for you. Sweet Lucia's name is on our lips constantly in prayer. May our good and loving God hold all of you close. Love, Joanie, David, Anna, Grace and Lily

  16. Hello--the way you describe her suffering has made my heart sink-and you are a strong women to write those words. I think about you and Lucia everyday while we are here in the hospital. I did not have the courage to call or write because I have been scared for both of our children and just can not stand to see them s...uffer like this--but, I am having serious conversations with God and so far he is listening. Just know that he is listening. I love you both.

  17. Dear Kh. Ramia. Prayers for mercy for your family and for your precious Lucia. May the Spirit provide you with comfort and peace in the midst of your suffering.

  18. Lord have mercy. Always praying. She is already a miracle. I love you guys.

    Auntie Gracie

  19. Lulu, you and your sweet, amazing parents are my inspiration. You keep me going each and every single day. I love you all with my whole heart and pray for all of you constantly.
    Love you!
    Auntie Leigh

  20. Oh Kh. Ramia, my heart goes out to you at this hard time. I just happened to find the Canon to the Lord for a Sick Child while rummaging through my in-laws' desk and I'll go through it tonight for your precious little girl. I wish I could do more for you! Please know that the Dalys are all praying for you and love you all very much.

    With love in Christ,

  21. I will pray for your family. I have not been in your shoes but have friends that have been. It is a blessing to have a special child from God. All kids are special but ours are extra special. Love coming your way right now
    mom of Mona Mae T13-11 yrs old.

  22. What a journey!! I'm thinking of you all and praying that everything will be ok! Lots of love!! My eyes teared when I read how you tickled her and she smiled. She must feel so loved and protected!!!


  23. Lord have mercy.

    You all are constantly on my mind and in my prayers. Lucia really is a child of the light. Her story and your love have touched so many people. Like Grace said, she's already a miracle!

    All my love,

    Auntie Erin

  24. God bless you guys. You are always in my prayers and i love you guys. Lucia is a precious angel. Father Anthony and Khouria Ramia, stay strong and keep the faith. Me and my family are always here if you need anything. Whatever it is.