Friday, May 18, 2012

Surgery---Our Reality Summit

Sitting here in ICU with my beloved son (with ONE of my beloved sons!).   I have never hada  child who needed a breathing tube, feeding tube and a catheter.   I have cried a lot and lost my cool at times. I have not been brave when I wanted to be.  But,  I know that Taylor is in good hands any way you want to see that. 
   I am thankful for insurance, for a skilled neurosurgeon, and for the many miracles that got us to this place.  We have met other families here in the ICU with poignant and riveting stories.  This is where the fragile side of life shows up bare naked.  It's amazing to me what families go through. 
   And then I can look out this window at the city of Chicago.  The NATO summit is gearing up---but I don't care.   Maybe I should.  Do any of those delegates have a son in ICU today?  I wonder.  My world seems so small and yet I am being carried by an expansive network of loving friends from all over the world.  We are holding our own summit.
  I KNOW you are  out there because we feel you  IN HERE with us. 


  1. I'm here.....and YOU are brave! (Hi Deanie!!)

  2. I saw this blog on Deanie's FB page, but didn't make the connection until the surgery was imminent. Trust me, you and yours have great strength and courage--and a massive capacity for love. Taylor is clearly a terrific young man who has had great support and love through the years. I've known many Downs kids (and adults) and the key to their thriving is having people around the,mwho love them and who

  3. Oops. And who don't treat them as "retarded." good on you!

  4. Marianne, you may not remember me but you were my UGA supervisor during my practicum in the fall of 2010. I know, I had a lot of work to do,still do, always will, but I am getting better each day and still learning a lot. I thank you for your contribution to teaching me. Anyway, I just found your blog yesterday and reading it made me feel compelled to call you, only I couldn't find your number. Today I looked at your blog again and only then did I see the current entries about Taylor's surgery. I know then that you must still be in Chicago, and I am in awe of your bravery and heart. I am thinking about you both as you go through this challenge and sending positive thoughts your way that everything shall go (or hopefully has gone) smoothly and soon be behind you. I would like, of course, to say something really profound and wise and truly helpful to you, but I am at a loss. I can only say that I am thinking of you and praying (in my own meaningful way) for you both to come safely through and home again.
    Trisse Williamson

  5. I've been thinking and thinking about you all, worrying about how the surgery went and how Taylor is doing... and then today it struck: check Marianne's blog! That sweet photo with the Pooh bear and Taylor's hand, heart-catch. I hope everything is going as well as it possibly can. Can I do anything at all? Feels so far away because I am... but also right there in the room with you. Remember to breathe and drink lots of water. Get your walks in. Store up your amazing strength and goodness. Pull as much love and support in as you can, from anyone/anywhere (sometimes the lady in the cafeteria has some extra). Reid is 26 on Monday, I know he'd send his love if he understood -- he probably is sending it anyway, what do we know? Sending love and hugs and hope. xoxoxannie


Thank you so much for your comments. I know it's scary to put yourself out there. I really appreciate your being on this journey with me. You really are brave..