Dec 5, 2011

Facts and Feelings

2pm ... Infectious Diseases doc just left.  He is greatly concerned.  He wants to pull this central line ASAP.  (Is upset it wasn't already done.) 

Once the line is pulled, they will see if his labs immediately improve and if so, that's good news.  If not, there's already another colony set up somewhere and then we have to go hunting. 

There are signs that this is already in his bone marrow though.  (Clearly, NOT good news.) 

Once the infection is clear for at least a week, then they might put another line in.  But he has to be infection free for 14 days before they will let him out of here.  SERIOUSLY?? 

My brain is spinning and I cannot get my head around this. 

Meanwhile, his pain level is increasing.  He's refusing to be touched.  He doesn't want to sit, only lay down.  He doesn't even want to lay on his side.  There's only one semi-comfortable position for him.  He can't stop screaming. 

His stomach looked a bit distended so they ordered a KUB xray.  They're going to have to do another one as that one showed "something" but it was inconclusive. 

Then tonight, his weight is up 1 Kilo (2 pounds) in 2 days.  (VERY concerning). 

These are all signs that the infection is kicking his butt. 

The only "good" news of the day is that the results of the blood culture are in.  He has Candida Albicans and Staphlococcus Epidermis.  These are both very common and found in/on most people.  But for some reason, it just got ahead of him.  And these both have treatments.  (The bad news is that he has already been on those treatments and it's not working so far.)

So those are the facts ... what about feelings? 

Can you handle the feelings?  If not, stop reading here.  (NOT looking for people to tell me I'm wrong or I shouldn't feel this way... just sharing my feelings.)

18 months ago I was sitting in a room just down the hall from where I am now and we were being given the news that he wasn't going to live to his first birthday.  We begged and pleaded with God and somehow, God heard our prayers and let him live. 

I knew then that if/when God takes Manny, that he will be better off.  He will stop suffering.  He will be able to run, and jump, and dance and eat.  So when I begged God to let him stay with us, I was like "Unless he's going to suffer." 

That was always my line in the sand. 
I want him here with me, unless he is going to suffer. 

And guess what? 
A lot.

So there's this huge part of me that feels guilty and selfish.  (Yes, I know I can look at it as all the love and support we've given him, all the wonderful experiences he's had and the love of the family.  I get that ... I USUALLY live in that moment.) 

But right now, as I sit and hold Manny and can't comfort him
As I watch him in severe pain
As I listen to him scream for hours and hours on end
As he is slipping further and further away from us
As I beg God to help him
it's hard not to feel responsible for this. 

And I feel completely selfish. 

The Mama in me wants what's best for him.  I still believe to the core of my being that his life is still worth living.  That he is supposed to continue to bring more joy to the world.  That it's worth fighting for him to continue to stay with us. 

But I also want him out of pain. 

And the question haunting me all day is:  If I can't have both, which do I choose? 
And I'm in tears because I know the answer. 


  1. The good news is...God won't make you choose. He will, and that choice will be the choice made. Hugs to you. I can only imagine how hard this is.

  2. Bawling and praying Beth! I soo wish I could come and just hug you! Few mothers will ever know the agony of having to ask these questions. God loves you so for your honesty and for your love of Many. I am praying for a Christmas Miracle! I pray God's perfect will for Manny and for you all and know that you are being lifted up all over the globe in prayer to God! God is ABLE!!! I LOVE YOU and am here. I know that NO WORDS can even begin to comfort but I pray you know that you and Manny are being held up before the throne!

  3. I am praying for peace and grace for you, and your family.

    And healing and no pain for Manny. I'm hoping and praying for this to happen on Earth for Manny...

  4. Beth
    I am so sorry.....I "get" every word :(.
    Praying in Alaska

  5. Beth
    You are so brave to share yourself so unselfishly with Manny and all of us who are lucky enough to call you friend. You inspire us all. We all want you, Manny and your whole family to find peace and happiness. If there is any way we can help, please ask. All our love,
    Jeff Shimer & the Dale Carnegie Tampa Bay Team

  6. I will be laying my head on my pillow in just a moment, and want you to know that my prayers will be for Manny and for you and your family. I HEAR YOU. Your feelings are so so loving, and honest and raw. God be with you, God hold Manny in your arms and bring him relief from his pain. Hold this mother who is hurting, and wanting what is best for her child. The pain is so deep.....Heal this family, bring peace and comfort dear God. We are with you here in Massachusetts, Beth. Loving prayers for you.

  7. Oh, Beth...I am so sorry. My prayers continue to be with Manny, you, and your entire family. You are such a wonderful, loving mother and it is so hard to see the child you love so much suffering from so much pain. Sending lots of prayers from Washington.

  8. Beth, I am so sorry. I pray that God comfort you like no one else can at this moment. I pray that He makes Himself so real to you in this moment. I speak balance to the levels of both Candida Albicans and Staphlococcus Epidermis. I pray that they would return to normal levels and that his immune system would fight them off appropriately. Most importantly I pray for God's will for Manny's life, whatever it may be, and that in that will you and Dan will find peace. I love you guys and admire you so much. I can only hope that I might one day be the mother that you are.

  9. As always dearones we are praying for you.

  10. Through this blog you have shared with us this dear and delightful little boy. It is heartwrenching to hear of his suffering and pain, so I can't even imagine how hard it is to be there watching it. Manny is in my prayers and so are you and the rest of the family. We will pray that pulling the central line will help him stablize. I would also hope that they have a plan to give Manny some pain relief. Maybe hospice can provide some guidance in that area. They seem so much more able to deal with pain.

    Carolyn (in Las Vegas)

  11. Beth, I pray that God's peace and wisdom would shake you to the core. That you feel a peace you cannot explain in man's terms. I pray you would visibly see Manny's pain subside and that the germs of these bacteria would begin responding to the meds. I pray that the Lord of all creation reigns over your doctors and nurses and instills insight in them as they try to help Manny. Most of all, I pray for your mother's heart and that you be free of any guilt that comes from Satan. God bless you and keep you in His care. lean on Christ like you never have. You have a mass of prayer warriors that BELIEVE Christ is at work in Manny's precious life.

  12. I pray that God will do what is best for little Manny. He knows the situation. He is holding you all. May His comfort be with you and may you feel His presence always.

  13. Beth,I have been following Manny's (and your) miraculous story here on your blog for awhile. Sorry for not commenting until now. I just wanted you to know that I am praying like crazy for precious Manny, you, and your whole family right now.

    Anita (Sanford) Herrick
    (AU Class of '95)

  14. We are praying for Manny and you all on this side of the Atlantic Ocean.

    Sandy (Galo) Sanso

  15. Dear Beth, I have been following your blog and praying for Manny for many months now. I will continue to pray, and just wanted to post tonight to let you know that I really can relate to the battle you are having about suffering. My husband Rob was diagnosed with a fatal brain tumor 3 months ago and that has been my worst struggle.I do not want him to suffer. I will pray that Manny will find relief from his suffering. Debbie