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Thursday, February 28, 2013

Good-bye Mickey

I was blessed to know many wonderful people at the time of my son's death.  What began as a patient relationship, quickly developed into something much more meaningful.  One of the most influential people during that time was a social worker named Ashley.  She and I hadn't gotten off to the best start the first time around, mostly because I was shrouded with anger and disbelief.  But, Ashley never wavered.  She came in day after day, reading to my comatose son, or simply to stand silently in the back of the room, waiting to be needed.  Eventually I opened up to her, and felt great peace just seeing her face after that.  We had many discussions and laughed and cried together several times.  But, the thing I'm eternally grateful for was her final gift to me.  She said, "I truly believe that no matter what state our loved ones are in, they hear us and feel us near them.  Don't be afraid to tell him how you feel.  I know he hears you.  I can feel it."

That may sound simple enough, but you have to understand that at the time, something in me had already realized where we were headed.  I had some sort of intuitive sense that this would be our last visit, and I just had to wait for everyone else to catch up.  So, I'd subconsciously begun to pull away.  I began to distance myself from my baby.  I did all of the mechanical aspects of care.  I became super nurse and no longer Mommy.  I did, that is, until Ashley gave me permission to grieve before anyone else did.  After that simple statement, I began to reach out to him again.  I moved the cords and tubes and I climbed into bed with him. I read him stories, traced the outline of his little fingers, and I told him how much I loved him.  She gave me the gift of "nothing left unsaid."

What I didn't know was how many ways I'd have to say good-bye.  Of course there is the obvious pain of physically letting go of your child, but it's the subtle, unknown good-byes that continue to hit long after that final day. For instance, I never got to say good-bye to Mickey.  Do you know how many things "stop" when something like this happens?  A typical morning for me consisted of getting my older children ready for school, but quietly so that Easton could have at least 5 more minutes of the precious sleep he so often missed. Then I'd get them in the van and have to wake my baby, which is hard enough in a typical situation, but waking a child with seizures is crushing.  He'd open his eyes slowly as we backed out of our driveway, and he always looked as life had just beaten him repeatedly.  But, as always, he'd have that sweet little smile for me as I checked on him in the rear-view mirror.  And although, I'd like to say I was checking for that smile, the truth is it was seizure counting time.  Forget texting and driving, I was counting the number of times my child's brain was misfiring, and it was nothing at all to get a number near 100 in the amount of time it took me to get from my driveway to the school and back.

Then we'd go inside and I'd plunk him down in the middle of the living room floor and immediately turn on Mickey Mouse Clubhouse.  This was necessary because I had to begin weighing and measuring ingredients for his breakfast.  Everything was made from scratch and baked or fried, so I'd have to keep checking on him by jumping back and forth from the kitchen to the living room.  I'd usually go in and talk to him about something silly that Goofy was doing. He'd "moo", of course, and smile, indicating to me that it was ok to continue with my cooking.  When I finished his meal, I'd try to feed him as much as I could before therapy started at 9.  If we couldn't finish before then, he'd eat while working, and I'd get out my pitch counter for the official hour of seizure counting.  And all of this happened by 10am every day of every week.

But what happens now?  What happens when you get home and it's so eerily quiet that you wonder if you imagined all those things?  Mickey doesn't come to my house anymore.  I can't hear his high-pitched, squeaky voice from my kitchen.  I don't smell the ketogenic eggs frying in the pan.  When I poke my head around the corner, there is no curly-haired baby smiling at me. And trust me, I've looked...a thousand times.

So, when you're wondering how someone gets through this, and if they're finally doing "better" remember that their good-byes will continue long after you've forgotten.  I will never be able to give someone the satisfaction of saying that I'm "better."  I'm doing what I can each and every day.  But, my  normal isn't going to come on anyone else's time.  I'm creating a new life here, and although that makes others uncomfortable, please remember that I'm still trying to say good-bye to Mickey.

Tuesday, February 19, 2013

Silent Screaming

Did you know that the human body can scream without making a sound?  I assure you, it can.  And the "sound" of that scream is more deafening than any audible noise I've ever heard.  It starts as a twist in your gut and bubbles up to your chest where it burns a hole in your heart and rips at your lungs as they try to breathe.  It grips you from the inside and doesn't let go.  The only partial solace is in an actual sound escaping from your mouth.  Sometimes it's a scream, sometimes it's uncontrolled tears.

It makes you feel trapped and alone.  It makes you think things and do things that scare you to death.  It makes you want to cry out for help, but doesn't allow you the voice to do so.  You start to shake with it's intense grip on your soul.  You yearn for it to stop, and beg for it to leave you.  You try to find it within yourself to get past this horrific moment in time.  Eventually you realize that this isn't something to be conquered on your own, and this is the worst part.  How can you ask someone else to join your pain?  How can you actively seek out a friend when you know all you'll be doing is dumping this heavy burden of grief in their lap?

It's an impossible thing to ask of someone else, but the truth is that we're all connected and we're going to share in one another's grief whether we're asked to or not.  I remember a time when Jeff and I were sitting in the lounge of the pediatric intensive care unit (PICU) at St. Louis Children's Hospital.  We'd just had a particularly horrendous morning and for a brief moment, one of the doctors had offered us the slightest bit of hope.  It was a rare occasion for the two of us to be together in a place other than our son's bedside.  We were hesitantly making plans to actually eat lunch together.  This hadn't happened in weeks, and we knew that we needed to grab the opportunity while it was available.

Just then, a fellow PICU mother (the woman right next to our son's room) came barreling into the lounge.  She was tearing at her clothing and screaming, "My baby's dead! My baby's dead!"  She reached out to her mother who'd been sitting next to us and pulled her to her feet while she looked wildly around the room.  She seemed to be looking at everything and nothing, all at the same time.  I'll never forget that crazed look or that guttural cry of pain.  I looked at my husband's face and saw a mixture of fear and hidden knowing that shook me to my core.

I stood there, frozen for a moment.  I was trying to take in what had just happened.  I tried to give a name to the emotions whirling around my body.  How could I be standing here experiencing this?  How was it possible to ACTUALLY feel the pain of a stranger in the span of about 5 minutes?  And why in the hell was it that one of the emotions I was feeling was relief?  What kind of a person does that?  I realized in that moment that the relief was coming from a place that recognized that the scream may have felt all-encompassing, but it hadn't come from me.  I'd been spared that moment at that time.  I felt grateful. Grateful, that the screams had come from room 19 instead of room 18.  Grateful that although they'd closed the unit for awhile, I'd be able to go back into my son's room and kiss every part of his little body because he was still with me.

I could hear that scream for weeks afterward.  I heard it in my few moments of sleep.  I heard it in the elevator when I was alone.  I heard it when I sat next to my son, stroking his hand.  But, it was never more terrifying than the day that I recognized it coming from my own body.  I became the woman tearing at my clothes. I was the wild-eyed person, spinning in circles, searching for anything that made sense.  It had become my own voice, my own body, reeling with the pain that shredded my soul.  And even though that particular moment is "over,"  the screaming hasn't stopped.  I'm shaken with grief.  I'm torn apart every day by little reminders of what will never be.  As horrible as it is to be living and breathing this kind of torturous pain day in and day out, I find myself with another familiar feeling.  The gratitude I felt in that parent lounge, on that cold day in November, is back.  I'm grateful.  Grateful for the pain because it means I'm still here, able to feel it.  Grateful for the love I share with an incredible human being turned angel.  And unequivocally grateful that despite the silence of the scream, someone always hears me.

Thursday, February 14, 2013

The Walk

One of the most difficult lessons I've had to learn in the loss of my son, is that I couldn't protect him.  I'm his mother.  That's my job, right?  Well, not always, and it didn't just stop with him.  My three perfectly healthy children weren't protected either.  They've been hurt in ways that many adults will never experience, and I could do nothing to stop it.  What I've learned about parenting is that it isn't our job to make sure "everything is okay" all of the time.  Our job is simply to walk through this life with them, and to do the best we can with what we're given.

Sometimes that walk is easier because you get to lead.  You get to take a position up front and you get to guide just the way you'd always imagined doing.  This is how it's supposed to be.  This is how things are done. I liken this to the typical parenting scenarios.  These are things like learning how to walk, ride a bike, get good grades, look both ways before crossing a street, go on a date, choose the right college, etc.  These are all the things we assume we'll be teaching our children.

 It's when life shows you a different path that things start to get a little rocky.  Sometimes your journey requires you to walk side by side with your children.  They are your equals in every sense of the word.  You experience the same things, even if you handle them differently.  You can't warn them about what's up ahead because you're getting there at exactly the same time.  Your only saving grace in this scenario is that you can still hold their hands.  My children and I have experienced this parent/child interaction a lot in the past 2 years. A sick family member puts a strain on the entire family, especially when there are no answers to the questions being asked:

"Mommy, why is Eastie sick all the time?"

"Mommy, why does everyone else get to have ice cream after school and we can't?"

"Mommy, why do our friends get to have sleepovers, but no one can come to our house?"

"Mommy, will I catch what Eastie has?  Will it make me sick all the time, too?"

"Mommy, why couldn't it have been me that had the seizures?  Can the doctor make it be me instead? Eastie needs a break."

Yes, these are all real questions that I found myself struggling to answer.  Early on in the process, I grew anxious thinking about ways to answer without damaging my kids for life.  But the harder I tried to say "the right thing" the more I realized that the right thing was just the truth.  I spend much of my time telling people to just tell me the truth. Don't sugarcoat it because that's not helpful for me. And then I try to treat my children differently?  I can look in their eyes and know immediately that my answer is not satisfactory, and do you know why? Because they can read people, too.  They know what's going on because they're doing it with me.  So, I may avoid harsh details, but I no longer try to spare their feelings.  Instead, I validate them.

Finally we've come to the most difficult part of the walk. This is the part where your children lead, and you must follow.  Sometimes we have to be willing to let go, and not only watch them navigate without us, but be willing to learn FROM them as they teach us how to walk with a beautiful mixture of innocence and knowing.  I could never have imagined the questions my children would ask, or the things they would say in the face of such a horrific experience.  And I'm talking about all four of them.  My son, my baby,  always seemed to know something that I didn't.  His eyes had a way of making you feel like he was much older than he seemed.  I've felt that way for quite some time but had never been more convinced than in the last months of his life.  I watched as my normally compliant, quiet child began to fight the medical staff over the tiniest things.  This child, who had once looked on with disinterest as several needles pierced his skin, now could not even be bothered to deal with a blood pressure cuff.  His "weak" side was all brute force when he pulled the instrument from his arm and threw it on the floor. I didn't realize it at the time, but he was teaching me.  My beautiful, sweet boy who could never say more than "momma" was speaking volumes with that one movement.

"Enough, Mommy.  I'm done.  And in a little while, I want you to know that it will be ok when you are done, too."

I thank him every single day for that most precious gift.  He showed me the path.  He had already seen what was up ahead and he was preparing the way for me.  Somehow he knew before I did that there would be pain and doubt and fear. And I will never forget the "answers" I felt from him while he was in the coma.  It doesn't matter if anyone ever believes me, and I will never be able to do it justice with words, but the connection between that child and myself was nothing short of miraculous.  Every decision we made was made together, and I'll never be convinced otherwise.

The other three children continue to amaze me with their questions because they're driven by a very adult understanding of the ways of the world, but asked with such an incredible child-like innocence.

"Mommy, when I die, will you hold me like you did Eastie?"

Obviously this question resulted in a sort of knife-to-the-chest experience, but I knew immediately that I had to answer it with honesty.  I couldn't give the knee-jerk, "Oh that won't be for a very, very long time, and you will be very old" response.  Why would I do that?  My children know better.  They know that life is not a guarantee.  But, the one thing I could say with absolute certainty was that if I were still here and it was within my human capability to do so, nothing could keep me from it.

Someday I'll get to guide again, and I'll feel that comfortable familiarity of being able to "protect" my children from some small matter.  However, we as a family, are forever changed.  We will always know that change is right around the corner, and that our roles will vary at each turn. But we also know that no matter who is leading, following, or holding our hand, each step will be taken together.

Monday, February 11, 2013

Fight Has A Different Face

In my experience, there is nothing more difficult than watching someone you love suffer.  Being a caregiver of any kind is extremely time consuming, and you inevitably lose a bit of yourself in the process.  However, caring for someone whose illness and pain is beyond your control is something you can only understand if you've experienced it firsthand.

I've learned a great deal about life limits, perspective, and grief because I was my son's primary caregiver. For now I only want to talk about life limits.  At some point during your "journey" you have to learn a difficult lesson...YOU DON'T CONTROL ANYTHING.  You can try to hold onto that notion of control for dear life.  You can even continue to make plans for days, months, years in advance.  And you don't have to be experiencing something awful to fall into this category.  That's the thing, none of us have any control.  But, difficult life experiences have a nasty way of teaching this lonely lesson.  The other thing you begin to understand is that hard work and determination don't always pay off.  Try telling that to people who have spent their entire lives devoted to sports. You're told in virtually every aspect of your life that if you just work hard enough and just want it badly enough, you'll get your desired result.  So what happens when life says, "actually, not so much"?

I'll tell you what happens.  You become angry and confused, hurt and defeated.  You look into the eyes of those around you for encouragement and healing.  And although they mean well, they can't give you what you need.  You just keep pushing and trying and "fighting."  And let me tell you something about "fighting." It's wonderfully motivating to have people encouraging you to FIGHT and to WIN!  But, I believe it's also important to know that sometimes fighting doesn't look the way you want it to look.  Sometimes it has a different face, and that's when you really find the fighter inside.  That's when you really have to dig down deep and say, "ok, everything I know to be true must be set aside because I love this person more than my next breath."  That is a nearly impossible kind of fight. The one you do while there is still hope is exhausting and aggravating and seemingly endless, but the one that shows you a clear end in the opposite direction will crush your soul. And do it.

I'm not looking for martyr points.  I'm not expecting a medal of honor. But, I do have a perspective here and I think it's important to share it.  What I'm trying to convey is that sometimes when you're encouraging someone, it's important to do it in a realistic way.  Of course it's  necessary to lift others up and to give them renewed strength for their fight, but it is equally as important to realize that the fight may not be what you expected and they're going to need the encouragement for that part as well.

So, to my fellow warrior moms out there who continue to fight every single day, this one is for you.  Whether you're in the throws of illness and making impossibly heartbreaking decisions, or if you're the one whose fight appears to be over to the outside world, I'm calling out to you to keep going.  Keep going in the direction you feel necessary. Most of the time, in this special little world we've entered, we're forced to make decisions that could potentially end someone's life. And you constantly ask yourself, "How in the HELL am I supposed to come up with an answer that won't destroy everything? Why does every question have to be, which one of these sucks less?"   We already know that there is no right or wrong here. Any decision guided by love is going to be the best option. And sometimes that means love for yourself, too.  Don't forget that underneath all of the martyrdom and the "strength" and the holding up of another life, there is still a YOU.  You matter, too.  I carry all of you in my heart.  I feel for those who still belong to my old club of tireless, yearning mothers.  I feel for your decisions and your heartache, your desire for hope and your constant despair.  I also carry those moms who belong to my new club.  I feel for the heaviness of your empty arms and that burn in the middle of your chest.  I feel for the way you're blindsided by pain each and every day.  I feel for your longing and your guilt, your grief and your angst.  But most of all, I feel for the fact that you very much understand that sometimes "fight" has a different face.

Tuesday, February 5, 2013

You're Only Everywhere

I remember that first day.  I remember the feeling of dread as I walked out the doors of the hospital.  I remember collapsing in front of the car, unable to open the door.  I remember contemplating putting my seat belt on, and nearly simultaneously thinking, "Why does it matter?"  I remember singing the whole way home with your aunt and uncle.  I remember crying and laughing a thousand times.  I suppose I expected some of those things, but what I didn't expect was my inability to hide from you.

We pulled into our neighborhood, and drove past all the familiar houses and trees.  You remember, the ones that I used reach up and hit their leaves on our bike rides? You would laugh and kick your legs out to make me do it again. Remember the little seat you rode in, directly behind me?  Remember how you used to reach up and pull my shirt up and tickle my back?  I'd turn around and give you a look and you'd just smile, totally intent on doing it again.  And remember the adorable little Spiderman helmet I got for you?  Well, I just remember retrieving it from the road about 7 times per ride.  It always boggled my mind that you wouldn't stack two blocks for me, but you'd somehow manage to Houdini yourself out of that helmet!

Then our car pulled into the driveway.  This is the part that hit me hardest.  I couldn't fathom walking into that house without you.  Our neighbor, whom you adored, was nice enough to come over and all but carry me into the house.  We walked in through the garage and I touched the plastic top of the bike helmet.  Somehow we made it up the stairs to the living room.  I sat in the middle of the couch right on the edge of the seat.  I sat there for three straight hours without moving.  I couldn't make myself leave that spot.  I thought I'd be "safest" there.  But, when I looked around I saw your eyes staring back at me in all the pictures.

Eventually I did move, and the walk down our very tiny hallway was one of the longest, most painful walks I've ever taken.  I turned toward your room, preparing to go in, but when I looked in and saw your little shoes, your toy cow, the blankets of your crib, I stopped breathing.  I couldn't go in there.  Not just yet.  I needed to stay "safe".  But, the truth is nothing is safe.  I went into the bathroom and your toothbrush still hangs there next to mine.  I put my coat on and found a spare diaper in the pocket.  I go into the kitchen to get a drink of water and your sippy cup falls into my hand as I open the cabinet door.

Everything had already been so hard.  Why did I think this part wouldn't be?  I felt like we'd been tossed into the middle of an ocean with no way out except our own determination to swim for shore.  It was never easy, and sometimes we inhibited each other more than we helped.  Many times all we could do was tread water.   We fought and fought to reach the shore, only to discover that our "oasis" was made of quicksand.  I realize now that I may never feel safe again.  I understand that hard work and perseverance don't always mean victory.  I know we have no more ocean to cross together, and I have to try and do this on my own.  But, instead of trying to hide away from you, I find myself looking for even the tiniest glimpses of your laugh, your smell, your touch.  Luckily for me, you're only everywhere.

Sunday, February 3, 2013

Soul Sister

She can be someone you've known since you were little.  She can be someone you've grown and changed with over a span of several years.  Or, she can come out of the most seemingly, unlikely places.  She just shows up, says, "Here I am, and I'm not going anywhere, so you'd better freakin' get comfortable."  It doesn't matter if you've known her for a minute or for a lifetime, because your connection runs deeper than time.  We all have them.  We all need them.  They are our soul sisters.

She SEES you...not as a mother, a wife, a sister, or a daughter. She sees you for you. She GETS you on a level you didn't even know you had.  She holds your hand when you need it, and pushes you out to walk on your own when she sees that it's the best thing for you.  She's the one who laughs with you, and isn't afraid to see you cry.  She may even cry with you at times. But, through her tears, she's still able to will you stronger with her eyes.  She can show you compassion and tough love all in the same look.  She lets you vent and complain and hurt, but she also isn't afraid to call you on your shit once in awhile.  She sees "where" you are, even when you don't.  She speaks volumes without saying a single word.

She hears the pain in your heart or the joy of your soul, and feels it too.  She's a part of you, and you of her. She always seems to know exactly what to say and when to keep quiet. She doesn't have to try too hard, because on some level she already knows what to do. No matter what's going on with you, she ALWAYS shows up.  She's there every single time, even when you wonder why she would continue to make the effort. She makes you feel safe and complete.   No degree of separation can break the connection.  She's here for life, and probably longer.

I thank her for being that for me.  We're supposed to walk this life together for whatever reason.  We're supposed to learn these lessons together.  It's not necessarily a conscious "choice" the first time you connect, but you realize rather quickly that just being near her feels like home.  Thank you for laughing and crying.  Thank you for making me safe.  And thank you for loving me.