Wednesday, May 23, 2012

Left turns and Rugged Roads

I never ever in my whole life thought I would be praying for my son to have a tracheotomy.  But today, that was exactly my prayer.  Sweet Taylor has been on the vent for eight days now.  The tube in his trachea is keeping him swollen and very agitated.   If, by any chance, you have just found your way to this story of Taylor, he had a full anterior and posterior fusion one week ago-----seems like a lifetime ago.   I know we've been here at Rush Medical Center for a year now---ok, maybe just a week of years.

We were told this morning that he would be given a trach today at 2:30. As much as we had dreaded ever hearing those words, it was evident that a trach would be an improvement over what we have now. 
At the very last minute, a critical emergency came up for another patient and Taylor was put on hold.  I fell apart.  I am a big baby.  I forget that sometimes---but I am.  I just start crying and calling people names.   I say bad words.  It takes me a while to process disappointment.  Thank goodness there were no 12--packs of Reese's peanut butter cups hidden under pillows or pocket books.  I would have swallowed them whole.  As it was, I just cried. 
    In this past week I have learned what Propopol is.  I have seen a Picc line inserted.  I have learned to read monitors and know what oxygenation numbers mean----all the while being able to gaze out of the hospital window  at The Sears Tower.   Two worlds slammed up against each other that seem to not know one another even living side-by-side.
     This has been a rough and rugged road.  We have had to make left turns when we wanted to keep going straight.  I have lied/lay/lain on the intensive care "bed" asking myself how on earth we got to this place with our son.  And then........AND THEN.....there are glimmers of light that come bursting through---and I remember.   Darkness and light----light and darkness.
I am terrible with Bible verses, but somewhere in my head, I hear these words from the Psalms that I memorized years ago.  I think I will sing them to myself tonight:
"Even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you."
And tomorrow will be better.  I know it.


  1. Dear Marianne,

    I have been where you are now. I have collapsed on the cold floor of an ICU. I KNOW.

    There is nothing worse than helplessly watching your baby suffer.

    You are stronger than you know; but when you can't go on, let yourself be carried.

    I can attest to the truth of your Psalm. And to this one: "Weeping lasts for a night, but joy comes in the morning..." (Psalm 30:5)

    I'm praying for healing for Taylor, and for some irrational joy for you. Sooner than later.

    love, Kim

  2. Woke this a.m. thinking about Taylor, hoping there would be a new post with more details and good news. Oh, sweetie. I wish that I could be there to take a shift or rub your shoulders or cry with you. Or feed you Reese's cups, what the heck, you deserve them. I can't imagine how scared and frustrated you must be. Hug Martha. The line that has comforted me the last two years comes from a Lucy Larcom poem: "There is light in the shadows and shadow in the light, and black in the blue of the sky." xoxoxoxo anndy

  3. Found your blog by way of "Margery", and read most of it. What an amazing story! I never knew a mother of a child with Down's Syndrome would have so many difficulties, and joys and life changing ways of facing what we all fear. I am so glad I read your well written and funny blog! I will never look at a special needs person the same way again. I feel so much smarter, and understand a bit more about the struggle. I'm your age with 4 kids- 31, 27, 16, 14,... a widow for the last 10 years. My journey has had it's share of tears, but yours to me was much harder. I respect your stamina! I loved reading your story and I know that God loves and is watching over your precious Taylor.


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..