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Friday, November 9, 2012

Stinky Face Strikes Again

Sometimes I wonder where my next ounce of strength is going to come from. As I entered the picu doors again during Easton's current hospitalization at slch, I felt that fear in the pit of my stomach returning like an old friend. Ahhh, yes. This is the part I remember. The part where you try to continue breathing while doctors rattle off issue after issue. The part where you try to avert your eyes from the children on mechanical ventilation, and those with bald heads, but know that you'll always take that glance in the end. Because you know that you're going to connect with them on some level. I remember all of it, and although we are different this time around, the same nauseating fear threatens to break me on a nearly hourly basis.

But somewhere along the way, somehow new strength is found. It can be from an encouraging test result or from the kindness of a complete stranger. I'm in hell again, but it's amazing to me how many angels seem to be here. The first was our nurse on the Neuro floor. Her quiet confidence and encouragement got me through the day, and then when things started looking worse and we had to get to the picu, she found me after her shift and said, "I just want you to know how amazingly in tune you are with your son. You got him the help he needed exactly when he needed it." she may never fully understand the weight of her words, but I'll carry them forever.

Then there was the time that my charger for my phone wasn't working and I went to find one in the hospital. I couldn't find one to match and the security guard helping me look said, "Will it work with an lg phone cord?" I admitted my ignorance when it comes to most electrical devices and she says let's try one more. She took me to her station and pulled out her personal cell phone. The charger worked. I said, oh thank you. I'll come back down and get my phone after it has charged a bit at your station. She looked at my parent tag and said, "Girl, you in the picu. You gonna need that phone. Just bring the charger back down when it's done charging. I'm here until eleven." I thanked her profusely while trying to walk away before she saw my tears. All of the bullshit hatred and hypocrisy in this country over the last couple of months didn't matter. Love won again. I assure you, that it always does, and happens to be extra special when it comes at the hands of a perfect stranger.

Next, there is Phyllis, who works at the front desk and gives me my new parent tag each morning. Now, she could ask my name, print the tag and be fulfilling her job requirements. But that isn't the Phyllis way of doing things. Every morning I come down before I even speak, she says, "and how is miss Shannon today?" She remembers my name. That is incredible considering. The hundreds to thousands of people she sees a day. One particularly bad morning, I walked to the desk saying nothing and when she asked how I was, all I could do was look at her. She sort gave me a sad smile and said, "I get it, you know? I understand your pain, fear and fatigue. My husband had a stroke in 2001, and he can do nothing for himself. I'm his care provider. Sometimes the worst part is that his mind is completely intact, but he can't speak even though he understands everything going on around him. So I do get it. I hope today is one of the good ones, Miss Shannon."

And then if you're really looking for some inspiration, you go to the Child Life playroom.  There you'll meet many volunteers led by one of the most inspiring people I have ever met in my life. The very first thing that everyone notices about Kelly is her wheelchair, but I assure you it will not be the last. She and Easton have a sort of kindred spirit connection that I just love to watch. She plays with him and encourages him when he's struggling to use his right hand. Last week she said, "Oh, it's my lefty that gives me trouble, but if you keep working it will come around. I wasn't even supposed to be able to eat without a device of some sort. The docs told my mom to institutionalize me. But, she's a nurse and she said there was nothing wrong with me, and she eventually told me the same thing. I now live on my own and I have a master's degree from Washington University. When I was in second grade my teacher was trying to get me to type because they thought my hands would never be capable of writing. When I learned to write, I wrote a letter to that teacher. We still talk today, and she apologizes for putting limits on me.  But I just thank her because telling me that I can't do something just fuels the fire. " Like I said, what wheelchair?

And finally the source of all of my strength comes from a curly-haired, cherub-faced baby boy today after a particularly bad seizure, when all I wanted to do was climb out the window to get away, instead I climbed into his bed. I held my blue-eyed baby to my chest and recited our Stinky Face story to him like neither of us should have a care in the world.  I made silly noises and changed the pitch of my voice as I mentally turned each page.  Then, from some place more beautiful than any other in the world, I heard the faintest rumblings of the greatest sound on earth. A baby belly laugh. This child who could not even find the strength to smile couldn't hold back from laughing at his goofy Momma. And that's when I knew. I'll never meet a stronger person. I'll never know someone with more determination. He had reminded me that the race is not yet over. And one way or the other, we're gonna cross that finish line together.


  1. You are truly an amazing woman and mother!!! Will keep the prayers coming for E and your family!!!

  2. You are truly amazing. I'm not sure I could be as strong as you are. I admire and pray for you every single day.

  3. Shannon, your blog always seems to bring tears to my eyes! You have such a gift in expressing and sharing your feelings. I'm sure that everyone has said the same thing to you, but I wish there were something that I could do for you. I wish I could take you back to the care-fee days of Rhinestone Cowboy ;) I know that someday you will get to have those care-free days again (as care-free as a mother can ever be), because Easton is a fighter and he will pull through all of this hell that you all are experiencing. I hope that it is soon that you can look back on this hump in your life and chalk it up to God making you stronger. Please, if you need anything at all, do not hesitate to ask. Always keeping you in my thoughts and prayers. May God be with you every single, long, painful step you have to walk. <3 Kobi

  4. Shannon,
    I work with Jenny Hays and have been truely ispired buy your story. But yes, I know it is not "a story" to you! You can not shut down the web page and go on with your life. I am praying for your family and peace. I know Stinky face well in our home and I promise to read it tomorrow with my chilren and remember how blessed I am. Thank you for reminding me!