May 18, 2010

Friends, next steps and random thoughts

All day today, I just haven't been able to write the blog with the info the Neurologist gave me this morning.  I will.  I promise.  But I need to tell Dan first ... and he's on his way to the hospital soon.  Once we talk, I can then tell everyone else. 

So in the meantime ... thanks for all the friends who have written personally ( or left messages on the blog or on facebook.  I'm not able to comment to all of them but each one is reaching and healing parts of my heart.  I appreciate all the support and comfort.  I don't feel so isolated in this tiny room. I am truly thanking God for my friends!

Enjoy some pics of Manny with his "friends" interspersed in this message.   

I CAN tell you the new things that are going on around here.  They have ordered a sleep study .. I think for tonight.  An EEG (to see seizure activity).  A urinalysis.  And a couple of genetic blood tests.  (Not looking forward to the IV stick to get that!)  But this is all an attempt to help determine the EXACT subdiagnosis under the main diagnosis.  It's also to determine how far the disease has spread and it will help pinpoint treatment possibilities. 

I sit here in disbelief.  One part of me just wants to S C R E A M and run and yell.  Another part wants to completely shut down.  There's a part of me who wants to fight it too.  I know the only ONLY hope of surviving this is a major miracle.  A MAJOR miracle ... and fast!  I know God is completely capable.  And I also know that God sometimes says, "No".  So I tell Him my request.  I beg Him to heal this precious baby.  I PLEAD with Him to take this all away. 

And yet I sit in the possibility that He will decide to take Manny anyway.  And I can't handle that thought right now.  It makes my brain bypass.  It won't compute.  So my brain goes to these completely strange little things.  Like the photo ... I want a great family photo.  (And I have friends who are working on that for me!)

I'm actually quite amazed at how my brain is coping with this by focusing on these tiny, meaningless things.  I'm very thankful for internet, email.  I'm appreciating all the comments and support.  Keep them coming.  And keep spreading word about one of God's precious children in great need.  I know He loves Manny more than I do.  Let's let God know how much we all love him too!


  1. Beth, I posted a link to your blog on my blog. Can I post about this on the yahoo groups?
    I'll be praying for you, Dan and Manny

  2. Beth and Dan, we are praying for Manny and for your family.... wish I lived closer to help.

  3. Said a prayer for ya'll...
    Hang in there,

  4. Beth,

    You are in our prayers. Praying Manny is always free of pain.

  5. Bethie, these are not tiny, meaningless details AT ALL. Family photos--essential. How about a mold of his little hands and/or feet? Handprints/footprints? Videos of his wonderufl laugh? A lock of hair? No matter God's answer, you will want tangible reminders of this part of your life journey. All Mamas do.

  6. I will be praying for you and your little one!
    In Christ,

  7. Hi sister (His Hands His Feet Today) sent me your blog link because you are a foster parent (us too!) and you live in Brandon (us too!) I looked at your picture and realized that you and your husband were in several of our MAPP classes last fall!! We are lifting you and your family up in prayer!! Please let me know if there is anything tangible we can do for your family!


  8. Beth, I am not so good at following blogs but I am good at praying! Lifting you and your family and especially your little guy.
    Sending HUGE hugs to you!

  9. I have many little things and am so glad I do. I have Chelseas hair from her last surgery. It is meaningful and I know you will cherish all of your memories. Pleas e know if you need to talk/vent, anything I am here and ready to listen. God bless you and be with your Manny.