No Hero

I've lost him twice now, the son I knew.  The first time I was filled with rage most of the time.  I asked 'why' so many times I've lost count.  I cursed and hated, screamed and cried.  I felt sorry for myself on several occasions and even sorrier for my baby. It was so hard for me to see children his age doing absolutely normal things.  I'd watch parents chase their kids around the parking lot at school with that look of fatigue and annoyance. I read countless facebook status updates about the toils of potty training and temper tantrums.  And I felt the burn each time.  I felt the heat rise within me, fighting against that part of me that was saying, "They SHOULD be complaining about these things.  This is normal.  This is ok."  But in those moments, I don't care.  I'm not rational, and I don't particularly care to be.  I say this because I want people to know that I'm no hero.  I don't stand here and pretend to have all the answers (or any, for that matter).

This time is slightly different, and it has been since the very beginning of this chapter or our nightmare.  First of all, we were only hospitalized because I felt like something was "wrong."  A couple of days into our visit, I felt sort of foolish because he was doing so well.  Obviously as the week unfolded I realized that listening to my gut was the one of the smartest things I'd ever done.  Secondly, I reacted differently as I watched seizure after seizure take my baby further and further away.  Instead of being just afraid and silent, I rocked him and sang to him, telling him that it was ok and I was right there.  Last time, I'd let him lie down on the bed and I held his hand while they gave him drugs and he slipped deeper and deeper into "sleep."  This time, I held him until the last possible second.  Until they came at me with the intubation tube.  I rocked him, and smoothed his hair and told him I loved him over and over.  I cried too, of course, because I knew all too well what was coming.  But, I did NOT let go, not until they made me.  In this moment, I'm grateful for that difference.

We also happen to have had different circumstances this time, and although I've had some lousy days in my life, I wouldn't necessarily have been able to tell which was my lowest point.  Now, I can give that answer and I realize that even as I write this, that could change.  I've now been to "that place."  I thought I'd been there before, but I was mistaken.  You see, there is a fine line between struggling to watch your child suffer and telling him that it's ok to let go.  I never thought I'd be able to imagine that, let alone say it out loud.  But, I've been there and it's real possibility that I'll be back.  I understand what it means to be in that moment.  Where time stands still and races around you on all sides at the same time.  You notice everything, from the heart beating in your chest to the antiseptic smell of the room, but you don't realize it until after you leave the moment because your brain is currently flying.  You run through so many "what if" scenarios and "how to go on if" questions.  And while all that is happening, you somehow channel that part of you that loves this person so much you could burst.  And that's the part of you that talks to him, that tells him it's ok, that you're right here and you aren't leaving.  That's the part that takes over and drives when everything is spinning out of control. You get to some sort of insane auto-pilot mode.

Getting to this place has made me realize that although this is hellish, it's also taught me so much more than I ever would have learned on my own.  I know what it means to run out of tears.  I know what it means to love beyond measure. And I know how important it is to share that, because you never know who might be reading and needing to feel like someone understands.  I've been asked several times why I update people on my son's condition.  Why do I write blogs about his illness and our journey?  Am I afraid that it will be on the internet forever and maybe he won't want that someday? I've asked myself these same questions.  But I realize now that this child doesn't belong to just me.  He's beauty and light, all by himself.  He's love and compassion.  He's grace and kindness.  He brings people together and shows them how to open their hearts.

I've laughed at the idea of WWSZD, but I also find myself answering the question sometimes.  What will I do?  I'll cry.  I'll scream. I'll crumble.  I'll get angry.  But, I will also smile.  I'll laugh.  And I'll hold my son, and I'll sing to him.  I'll smell his hair and read him his favorite books if I'm given that privilege.  I'll cherish the moments we have because they are a gift.  Like I said, I'm no hero.  I'm just a mommy who knows what it means to lose her child and be given the chance to love him again.

"Other" People

The social workers and the "Don't Jump Off the Bridge Team", as I like to call them (actually called PACT, but I can never remember that and the other name is so much more fitting), keep telling me not to take on "other" people's pain.  I ask them, daily, how that is humanly possible.

 First of all, it surrounds me. And secondly, I don't feel like they're "other" people.  Their pain is mine and mine is theirs.  We may have only just met, or as is often the case, have never even spoken words aloud to one another.  But we know.  We know in places that we're scared to talk about that each of us is fighting a battle here.  We have learned to decipher between the newbies and the lifers.  Parents new to our world often have red, tear-stained faces and questioning looks.  They cry loudly and openly.  For those of us who've been here more days than we can count, the look is more like stone.  We've cried more tears than we'd ever imagined possible and lack the energy to produce more tears.  We hear "good" news and fear reporting it because bad news always seems to follow. We've been places no parent should ever have to experience.  We're drained, shredded, and turned inside out.  But, it's those of us who get to be beaten another day that are the lucky ones.

I see children with bald heads and beautiful smiles.  I see the ones who can barely open their eyes, but when they do, show you a fight like no other.  I see babies running around units acting perfectly normal, and you know they're headed in for the surgery of their lives the very next day.  My mom heard a 9-10 year old girl walking behind her mom saying, "But, Mom, I just don't get it.  I need a heart right now, if I'm going to get better."  She wasn't whining or complaining.  Just asking her mother why they can't get her the organ she needs.  The mother looks straight ahead with that steel will and continues walking, because what other choice do you have?  

So much pain and sadness.  So many tears and unanswered questions.  So, I ask you to tell me how I'm supposed to forget about "other" people's pain?  It isn't strength or some amazingly  kind and generous nature.  It's just the reality of this place.  It's the need to connect with other human beings.  And above all else, as always, it's the human heart's incredible capacity to love.

Love Enough for Two

Books are his favorites. He likes watching Mickey and Bubble Guppies and Baby TV.  He points for things he wants, and smiles and nods when someone understands.  He crawls over and pulls himself up to be loved.   And he has a special preference for his Momma.

There are so many possibilities in the next few days, and each possibility lends itself to a different set of worries.  For awhile those worries included, "will he ever walk?  will he be able to have a job, or live on his own?"  Recently they changed drastically to, "how do I walk out of this hospital without that baby in my arms?  how do I go into my house and walk over his toys, brush my teeth and not notice his toothbrush hanging in it's holder on my bathroom mirror?  what do I do with his clothing, his diapers, his food?  how do I create a life that isn't centered around measuring, cooking, therapy, snuggling?"  I don't know the answers to any of those questions, but I do know that the need to answer them is still a very real possibility every second of every day.

I have no idea why this child is still here.  Nothing in my scientific, medical background can make any sense of it.  But, for whatever reason, he's still fighting.  If he gets to come back, who will he be?  Will he remember Mickey?  Will he eventually know that he was once able to crawl and can he get back to that place?  If I close my eyes and listen very carefully, I can still hear him saying, "Momma, Momma".  I'm so very grateful that I had a few months of hearing that beautiful sound.  It's one that I'm incapable of forgetting. And I'll hold onto that because I don't know that the child who wakes will remember my face.  I know the little boy who left me last week thought that I hung the moon, but I've been here before and I know that it's possible that he won't remember me.  I remember him, and I'll love enough for both of us.

Fear

Fear.  Let's talk about fear.  I used to think I "feared" many things.  I didn't necessarily like taking my kids to get vaccinations because I didn't want them to hurt.  I hate elevators, and will take the stairs every chance I get whether I'm headed to the first or fifty-first floor.  I'm afraid of heights in some instances.  Every person has a certain amount of fear in becoming a mother, I suppose I did too.  But what I'm currently experiencing is so far beyond any definition of fear that I've ever considered.

Each time I wake up, I'm reminded of where I am.  Lights flashing, machines beeping, parents crying.  These are the sounds of our world.  Certain machine noises can send my stomach lurching to my throat in an instant.  When that happens I have to grab hold of anything near me and keep myself on my feet.  I have to put my hand to my mouth to keep from vomiting.  This happens approximately once an hour.  I've learned to eat as much food as I can when my body is allowing me to swallow, because I have no idea if I'll have that function an hour from now.  Sometimes it's just gone.

When I've left the bedside for any amount of time, I feel as though walking back is like walking to your own execution.  Although they never actually finish the job.  It's like someone is saying, "hurry up and get back to the place where you're blindfolded and someone gets to freely punch you in the gut every 20-30 minutes."  You get beaten to within an inch of your life every single day, but are left with just enough to make you come back for more the next day.  And you do it, because you have to.  Because failure to show up and hold a hand is not an option.  Because your fear is not as important as his life, or his possible fear.  Because even though it turns you inside out and upside down, you know that you're going to be right there, standing on two feet for whatever comes next.  Because that's what you promised him the day he was born.  You promised to love him and to BE there.  And so that's what you do.  Each day, you breathe in and you breathe out.  You put one foot in front of the other, and goddammit...you show up.

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.