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Tuesday, November 19, 2013

Thank You, Mr. Larry Fitzgerald

Brothers. I've always been grateful that we were able to give our children what I consider to be their greatest gift, siblings.  There are some things you can only learn from your siblings, and they also provide an understanding of your life that no one else can touch.  When I was pregnant with 3 of 4 of my children I was a gestational diabetic, which means I had SEVERAL ultrasounds.  I would drag my once excited, but now bored three-year-old daughter to every one of them.  The first one thrilled her beyond words, although she tried to articulate her feelings in her adorable baby way.  However, by the time we'd reached what was probably the seventh one, she had resigned herself to bringing a book or toy and occasionally placating the amused technician with a cursory glance at the monitor and correctly named the vital organs being shown there.  I, however, watched carefully each time because there is something thrilling about seeing that little human doing somersaults inside your body and feeling the movement at the same time.  Although my husband and I prefer the "surprise" when it comes to the gender, I'd now seen so many ultrasounds that I was more than positive that this child I was carrying would be a boy.

I remember being ecstatic when I first discovered that we'd have another son.  Obviously, it's a 50/50 shot and none of us can control the outcome of that any more than anything else in our lives.  But, I was thrilled that my son, Logan, was going to have a brother.  I kept the secret to myself (even from my husband), but made sure that we had a video camera ready when the kids came in to meet him.  I couldn't wait to see my son's face when they handed him his new brother.  Just as I'd anticipated, Logan was over the moon.  He held him first and just stared at him as if to say, "Are you REALLY a boy?  You're ACTUALLY a brother?!?"  After years of being surrounded by mostly women, he'd been anticipating this moment more than the rest of us.  He immediately began telling Easton about all the things he was going to teach him.  He'd show him how to throw and fish and bother his sisters.  He'd be there to defend him if anyone were dumb enough to pick on his little brother.  I'll never forget the look on his face that first time he held him.  It's one of my most cherished memories.

Last December, Logan was robbed of all of those moments he'd envisioned with his brother.  He'd already given up so much.  He learned rather quickly that Easton wouldn't be like other brothers.  He wouldn't be able to go on bike rides with him, or run and catch a football.  But, he never gave up on him.  True to big brother form, he simply changed the game.  One of their favorite things to do was a game in which Logan lay on the floor and Easton would slap him in the nose repeatedly.  Logan took it for as long as he could and then rolled away in mock pain, and Easton would throw his head back and laugh hysterically.  This game went on for hours at times.  Watching the two of them together was truly something to behold.  I remember sitting on the couch once and staring in awe at them.  My boys had not been deterred by illness.  They hadn't lost to seizures.  They still found a beautiful way to just be brothers.  I will also never ever forget the look on Logan's face the day I had to tell him that his brother was only going to get worse and that he couldn't come home.  I remember the pure pain and agony in his eyes.  I remember the way he punched the hospital bed and threw his body over his brother's, begging us to be wrong.  I remember standing there, helpless, watching those brothers embrace for the last time.  It's a bizarre mix of emotion when you realize in that instant that you've seen an entire relationship of love with your own eyes.  I had watched as they placed Easton in his arms the first time, and I was there as Logan clung to him for the last.

How do you take that kind of pain from your child?  How do you tell him that everything will "be ok" when he knows better?  We can't.  All we can do is love him through the process.  One of the ways we've decided to take on that task is to take each of our children on their own get-away with Mom and Dad.  Logan chose a weekend of sports, of course.  We saw a great St. Louis Cardinals game on a Saturday, and on Sunday we watched the Rams play his favorite NFL team, the Arizona Cardinals.  He'd worn his jersey that boasts the name of his favorite player, Mr. Larry Fitzgerald.  Before heading into the locker room after warm-ups, Mr. Fitzgerald came over to Logan and handed him his practice gloves as a keepsake. My son's smile lit up the room in that moment.  He put the gloves on and didn't take them off the rest of the game.  The Cardinals lost that game, but he was too proud of his special moment to even take notice.  Jeff and I were so happy just to see him smile a real smile.  We hadn't seen it in so long, and it was beautiful.

Jeff wrote a long thank-you to Mr. Fitzgerald so that he would know just how important that moment was to our family.  He spoke of Easton's life and death and how much he'd meant to his brother.  He thanked him beautifully for giving us that moment.  Today, a couple of weeks after Jeff had sent the letter, I received a package.  The return addressee said, "Larry Fitzgerald."  I assumed my husband had bought something for Logan, so I opened it.  Inside was a signed 8x10 of Larry Fitzgerald and on it, a note to Logan:

To Logan,
I'm proud of you for your courage and perseverance.  Losing your brother is not easy.  My heart goes out to you and your family.  I know you will always keep him close to your heart.  I got a letter telling me that you were a fan of mine.  I want you to know that I am a fan of yours and that I am proud of you for just being you.  Keep working hard in class and be a good big brother to your sisters.
Best Wishes,
Larry Fitzgerald    Faith, Focus, Finish!

I don't know about you, but I consider this to be one of the greatest achievements of a professional athlete.  He reached out to a young fan in pain, with no expectation of accolade or acknowledgement.  I couldn't wait for Logan to get home and read what his hero had sent him.  I video-taped him as he opened it.  I don't ever want to forget the look of awe as he opened that package.  He was beyond thrilled, and called everyone he knew in the next ten minutes.  He ran to neighbors' houses to show them.  His smile was back tonight.

If I could tell this story to every person I know for the rest of my life, I would.  We've already written the thank-yous that we're sending back to him, but I wanted to tell as many people as I could about this amazing man and his beautiful soul.  So, THANK YOU, Mr. Fitzgerald.  Thank you for my son's smiles.  Thank you for giving me happy memories of his face as he opened your gift.  I have entirely too many pictures in my mind that are formed by pain and suffering, and in this simple act you've replaced them with something truly inspiring.  Thank you for giving him a reason to continue to strive for success in his life.  And most of all, thank you for showing him what it means to be an incredible human being.  We'll forever be grateful to you for your kindness, for your "love for the sake of loving" (as is written on our ETO cards).  He'll know what it means to be generous.  He'll know what it means to be kind.  He'll know what it means to love.  And that, sir, gives him back a little piece of his precious brother.

Monday, November 11, 2013

One of Those Days

Today is one of those days.  One of those mercilessly frequent days when we feel the entirety of our brokenness as a family.  Today my husband mourned the last day that he had "his boy."  The last day that he held him and played with him before that horrible seizure led to the coma that stole him away forever.  He mourns in silence because the enormity of his pain is too much for any of us to bear.  Who can you possibly reach for in those horrifying moments, if you can't even bring it to your own family?  He only wanted to reach for one person, and that little person is gone.

It's one of those days where, in the midst of my husband's grief, I was doing things that kind of looked like functioning.  I went to the grocery store.  I prepared a dinner.  I gave medications to our sick kids.  I was sort of reeling over my utter ambivalence about the fact that two of our kids had very high fevers and had been vomiting all night.  I kept thinking about how easy this "illness" was.  No need to pack a bag for a potential hospital stay.  They would simply get better.  Did that still happen?  Was that was this new world meant for us?  No need to fear that the vomiting would result in the expulsion of vital anti-seizure medications, or that a high fever would encourage more seizures.  Was this possible?  Did I only need to sit back and watch as their bodies healed themselves?  As I sit and write this, they each have their own books and are smiling in their own little worlds.  So, I guess the answer to all of these questions is "yes."  At least that's today's answer...

This day encouraged my husband to ask me for my phone because, as of right now, it is the only device we have with recorded videos of our forever baby.  Like most of the pieces of our grief lives, we view these videos differently.  He watches them to remember and to help soothe a need.  I don't watch them at all.  I did for a time, but today upon showing him how to retrieve them from the phone, I started one and the sound of my son's laughter filled my ears and shattered what's left of  my heart.

Like I said, it's one of those days.  One of those days in which my skin feels like it's barely strong enough to keep me from going everywhere at once.  One of those times where all I can do is lie down and lose myself in a book in order to take my thoughts anywhere but that searingly painful place.  And it all started with a laugh.  A beautifully rhythmic baby giggle that at one point would have seemed like the sweetest music, but now burns an irreparable hole into my soul.  My physical relationship with my son has been reduced to a video.  While I know that the blessing of this video is a true gift, I wonder, would it be enough for you?  I don't just hear the laugh when I watch it.  I see the toy he was sitting on and I remember the first time he manipulated it successfully.  I remember our cheers as a family in the middle of our living room floor, and his look of wonder at what we could possibly be so excited about.  I remember the feel of that fleece Old Navy pullover that he wore all the time.  I remember the smell that wafted up from the collar as his body snuggled against mine.  I remember the frayed ends and how it became too short during his last autumn in my arms.  I see that baby laughing at his sister and I remember the woman on the other side of the camera trying desperately to enjoy the moment, but ever vigilant as she waited for one of the harder seizures to take his right side by storm and slam his body on the concrete.  I remember her need to stop the camera and take him inside to prepare his third meal of the day, and I remember his reluctance to eat it and the frustration that brought.

I can no longer hear that laugh without the sting of pain.  That toy has been banished to his room where everything else is piled around it like haunting relics of what will never be.  The little girl in the video has lost her best friend and her eyes are forever changed.  And that fleece pullover...that wonderfully soft piece of baby sweetness that used to be a regular part of my life has lost its sweet scent.  I'm always amazed at the millions of ways in which we are capable of losing one person.  And although the heaviness of that loss is always present, today was particularly grief-laden.  Once again I've lost my son, and this time, at the hands of laughter.

Thursday, November 7, 2013


It's the season of germs.  Every school in the midwest is experiencing the joys of vomiting, feverish children leaving for various doctor appointments.  Today was my turn, and although this is an "annoyance" most of the time, for me and my family, it was our first trip back to a very familiar and very painful home away from home.  I dreaded this moment from the time I confirmed the appointment for my oldest son. In fact, when my oldest daughter found out that he had to go, she asked with tears in her eyes, if he was going to die.  My children don't fear shots as much anymore. Doctor's offices are much scarier than any vaccination could ever be. While I was quick to assure her that his was a minor illness, I, too, feared the worst. My reasons were just a bit different.  I imagined being taken to the same room and seeing the same Nurse Practitioner that marked the beginning of the end.  Each time I thought about the possibilities, my stomach would turn and I'd try to distract myself.

I ended up needing to take both my oldest son and my youngest daughter, because she'd been acting a little under the weather as well, and I wasn't about to take the chance in needing to come back to this place.  By the time I got to the office, I'd conjured up every possible scenario.  However, when I walked through the front door, nothing happened.  Nothing.  No breath sucked from my lungs.  No racing heart.  And you know what the truly amazing part was?  I got to watch my two "sick" children walk through the doors on their own.  And when we were taken to the room, which was mercifully different from the scary one I'd anticipated, I listed their symptoms with no fear.  Do you know how many times I got to answer "No" to the potentially scarier questions?  I was absolutely aware of how blessed I was in that moment.

I also had some questions about a possible issue with my son, but even in that moment, I wasn't afraid.  And do you know why?  Because NOTHING surprises me.  This is one of those hidden gifts given in a situation like this.  I hear seemingly horrible news all the time, and it isn't that I don't care that "this" person has cancer, or "that" person was in a car accident.  It's that I'm never surprised by that.  I realize how terribly morbid that probably sounds to some, but I can also tell you that it's completely freeing.  I know I have control over nothing, so I don't stress about trying to make it all work according to some plan.  That's a complete 180 from my previous personality.  And quite honestly, a piece I wouldn't give up.

After the appointment, we had to get lunch before going back to school because they'd missed it.  We went through a drive-thru.  Again...BLESSED.  I could NEVER do that when Easton was here.  You cannot have normal food around a 2 year old on a ketogenic diet.  Especially not when his siblings are the ones getting to eat it.  Now, obviously, I'd rather have my son here and would avoid ever eating out again if I had to, but he isn't here and the little people who are don't have the diet restrictions he did.  So, I got to feed my children horrible, grease-filled, deliciously indulgent fast-food.  I'm grateful for that.  The next time you chastise yourself for shirking your "dinner responsibilities" and driving through somewhere, try to consider the blessing in that.  (It makes fries taste lots better, too) :)

I dropped my son off at school and he went in on his own, to his wonderfully supportive school family, where he does very well.  Blessed a thousand times with that moment.  Do you know how many things have to go right for a ten-year-old boy to be able to do all of those things, while simultaneously being relatively happy and fulfilled?  I do.  I'm very much aware.

I'm not better, and I won't ever be better.  Not today, not tomorrow, and not 20 years from now.  However, I do have moments where I see the beauty in the life I'm experiencing.  I always have.  But, now I have a heightened sense of appreciation for what used to seem like the small things in life.  I'll continue to have these moments. Just as I'll continue to have the periods of time when I can't seem to breathe, but they're my moments.  They're my life, and they're mine to experience.  I know he's with me.  The signs are too ridiculously obvious to ignore or explain away.  And while I'd readily  have given my own life to have been able to create a different earthly existence for my son, I'll honor his memory by seeing the beauty in the small moments.  He continues to show me daily, that they're the big ones.

Tuesday, November 5, 2013

The Date

Yeah, yeah, yeah...that "date" is coming.  It's going to be December 8th soon, and while no date in the last year has been a good one, I think most people assume that this one will be the hardest.  Will it?  Hell if I know.  In my experience, the days leading up to "the date" are actually worse, and it's nearly impossible to shed even one tear on the day that everyone expects you to be a heaving mess.  You want to see that?  Come over a few days before, or now for that matter. Why does it work that way?  Who knows?  I know it doesn't make much sense, but the beauty of grief is that NONE of it makes any freaking sense.

In fact, do you know what day scares me the most?  December 9th.  Why?  Because then the "date" will be over.  A year will have officially passed and the last day that I'm allowed to be visibly upset will have come and gone.  I know, I know, "there is no time limit on grief," "take as much time as you need", etc.  Sure, except that isn't true.  The truth is that even those with the best of intentions assume that at some point, this part will pass.  I don't believe that, and maybe it's just because I'm in the beginning stages and it only happened five minutes ago.  Does time even matter in this situation?  I think, no.  I recently heard a woman say that she didn't want to let go of her grief, because it was the last thing that connected her to her daughter.  Thank allah for that woman because I was beginning to think that maybe I was a little crazy. (No comments necessary on that one.)

I was having a seemingly innocent conversation with a friend a couple of weeks ago, and I remember saying, "Oh yeah, Easton was Superman last year for Halloween."  That was right before the punch in the gut.  I felt like I'd literally had the wind knocked out of me.  It's a very physical experience and it happens all the time.  Immediately after saying that simple line, I realized that it would be the last time I'd ever be able to start a sentence with, "Last year he...".  Never again will that be true.  None of my years or "last years" will involve a story in which Easton was alive.  How is that possible?  I have no idea.  It makes absolutely no sense.  These moments happen so often that it's almost become routine.  Wake up, brush teeth, get punched in the gut.  Exercise, eat something, punch in the gut. Smile, laugh, gut punch.  Over and over and over again without fail.  And as awful as that sounds, this is not the worst part.  Insane?  I know, trust me.

The part that makes your head spin, that brings you to your knees, that surprises you on a daily basis, is the loss of self.  I'm no longer the same person.  That may sound cliche, or even "expected", but the truth is that you could never expect to know what it's like to wake up in a completely different body that's guided by some new person's brain.  Is all of it bad?  Of course not.  Of course there are parts of this new person that I'm eternally grateful for.  She's much slower to judge and quicker to love.  She has no expectations of anyone or anything, so everything that happens is pretty much a "roll with the punches" situation.  She no longer fears any of the things she used to because nothing she experiences now will even come close to what she's already seen.  However, I don't KNOW her. She's broken. She's foreign.  A stranger.  And she never goes away.  She's still there when I'm supposed to be compassionate about someone else's "dire" situation.  Hers seems to be the only perspective that matters.

Anyone who knew me before, doesn't know this woman.  Anyone who knows her now wouldn't recognize the person I thought to be me.  A particularly poignant moment in my recent experience came as I was remembering the first Christmas that my oldest son was old enough to care about presents.  I was working nights at the time and had been up all night Christmas Eve, but stayed up the next day so that I could see him enjoy the day.  I remember telling my husband that although I was a nurse, I didn't care what I had to do in whatever job I happened to have at the time, I would never miss a Christmas morning with my children.  But that was the old me.  This new woman hates Christmas, and all other holidays, or any family gathering for that matter.  I can't imagine anything worse than sitting around a tree, with a room full of family, passing around gifts that mean nothing.  So, like so many other things, I've also lost Christmas. How many ways can you lose someone?  You'd be surprised...

So what's the point of saying all of this?  Why do I keep re-hashing pain that isn't going to go away or change?  Because, like I said, she doesn't go away.  All she knows is pain and grief.  It's the air she breathes and the water she drinks.  The woman before her has died, and to expect her resurrection is as futile an expectation as that of Easton's.  She's not coming back, so say your good-byes to her and move on or don't, but know that no one misses her and simultaneously loathes her existence like I do.