To My Children

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I’ve told you this as you sat at the end of my bed late at night, during kitchen talks with you perched on the counter, and in casual moments hanging out in the Iiving room together; but I’m telling you again. I’m writing it down, because words matter.

I want you to read this when your heart fills with doubt and you allow yourself to be judged by the ridiculous standards the world imposes.

You are loved.

You don’t have to earn that. My love for you is not conditional. I will love you through your life journey and I will always be there. Nothing you can ever do would cause me to turn my love away from you.

You are valued and worthy.

I look at you and find myself moved by the gift your life is to this world. I know you’re still figuring it all out and I know that some days you don’t feel you have a clue. But guess what? I see it!

You are a beautiful creation.

You are exquisite. You are irreplaceable. Your life is a work of art. I look at you and it proves to me that God exsists and that He loves me.

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Here’s what does not matter to me and should not matter to you either:

I don’t care if you get an A in Algebra or a C-. I don’t care if you choose to read a book or if you need to listen to it. I don’t care if you need to tell me what you feel or write what you feel.

I don’t care if you go to college or get your GED. I don’t care what letters may fall after your name or how many 0’s are in your bank account.

Here is what matters:

I want you to love well. I want you to be kind. I want you to change the world because you have discovered what makes you feel alive. Because, my darlings, the world needs you. The world needs your love, your kindness, your joy, your journey.

I want you to be brave. Not in the “tough it out” kind of way, or the “suck it up and deal” kind of way. I want you to be brave enough that you will try hard things, regardless of the outcome. Brave enough that you will believe that you are capable of magnificent things. Brave enough to not fear failing.

I want you to dream. I want you dream BIG dreams. I want you to believe that dreams can come true. I want you to grow up thinking that anything is possible. I want you to go for it and not be afraid.

I want you to look at what the world might call failure and see it as an opportunity to learn and grow and try it differently the next time.

I want you to learn because learning is fun. I want you to explore the world. I want you to shoot for the moon.

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Oh and let me be clear on this, in case I haven’t been clear enough. I could NEVER be disappointed in you. (Unless of course you decided to become a mean, grouchy person who forgets to be kind and loving and in that case I might have to shake you up a bit.)

I will always be proud of you for pursing the things that make you feel alive. I will always be proud of a new work of art, the song you just wrote, an accomplishment at your job, a great business idea, learning a new skill- the things that come from the very heart of who you are.

I will be the first to celebrate your sucesses. I will celebrate the things that make you feel proud. And I will point out the successes that you may forget are the ones that really matter in life: when you encourage a friend, make someone laugh, see someone’s need and become the solution; when you reach out with kind words, try something new, or simply sit in silence and hold the hand of someone who’s broken and in pain.

My children, my greatest gifts, the truest reflection of Love in my life, oh how I love you.

Wavering Faith- with a wide open heart

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Recently a reader wrote to me and shared about her losses, and the struggles she has had with her faith.  She said,

“The reason I’m writing you is because your faith has never wavered…..I guess I just want to know how you do it.”

First, I’m sorry if I have painted a picture of unwavering faith. I am so very, very sorry. It is so untrue. And as I tell my story, I have promised to tell the truth.

This “wavering faith” part of my story is a hard truth for me to tell.

As our therapist explained recently, it is not uncommon during loss to have matters of faith either driven deeper or to become shaken up a bit (or a lot).

So here I am. And I don’t know what to say.

But I’ll just say it.

My faith has wavered, vacillated, and been shaken to the core.

I have asked many questions. Questions that have no good answers. I don’t have to tell you the questions. If you’ve struggled with your faith in any crisis in life, you don’t need me to help you formulate the questions. They are there.

I’m still asking them. I still don’t understand. This still makes no sense to me.

It never will.

My faith is being stripped down to the bare essentials.

I have chosen to believe that God is good even when I don’t get this mess we are in.

I have chosen to believe because my history with Him has shown this to be true.

Yet, trust me there are days when I question that too.

That He gave us Matthias, that one little boy exuded love with such intensity, speaks of God’s goodness. I have that, as well as many other points in my history that clearly cry out to my heart, “Remember that God is good.”

But there are strings of platitudes and trite expressions that fall very short of explaining this great loss. They get thrown around like a bandaid given to someone who’s limb is severed. They don’t work. They are much better left unsaid.

My hand are shaking, my faith is broken, my eyes so weary from searching for answers, yet I try to keep my heart open to hear Him when He’s ready to speak to me again.

For now, it has been very silent, but I sure am ready to hear Him say something.

So to you, my friend, to you who has lost, I’m sorry for your loss. I’m sorry for the pain. I’m sorry your heart has been shaken too. I reach out to you without answers, but with Love and Grace and Compassion.

I’m going to leave you with these thoughts from my friend John Pavlovitz,

Right now, at the core of it all is this simple truth: I so love you and I so hate this for you.

And because of that, I too find myself now with only tears and terrible sounds as an offering.

This is far less than what I wish to give you and much less than you deserve, but it is all that I have of worth as you suffer and wait.

Read full post HERE. 

And I tell you this one thing, in the midst of the shaking hands and the wavering of my spirit, I have chosen to keep my heart wide open. And what I am finding is that slowly in precious, sacred moments I am feeling LOVE, and LOVE always points me to Him.

And to those of you reading in, unable to understand this,  I ask you please do not answer back with words that could bring pain. Consider this:

I sit suffering in solidarity with you, here in the absolute wrongness of it all. 

I don’t come with easy, lazy platitudes about the greater plan or the silver lining or the valuable lessons of all of this hell you are now enduring. Those are things that only time can show you anyway.

– John Pavlovitz

Let the Words Fall Out

 

The words are really going fall out in this post.  

Trigger warning: please do not read if hearing about  the night Mattie died will trigger you or be too much to process. 

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I don’t want to forget. I need to get this down on paper, where words live.

I don’t want to forget that day. I want to remember every moment, but from the moment of his death, there are somethings I can’t remember.

I can hardly remember what I did that day before the moment. I sort of know cognitively the things I did, but they are gone from the movie in my mind.

I don’t remember where I was standing when our nurse called for us to come. I just remember being there- in an instant.

I remember seeing him and knowing what needed to be done.

I walked quickly into the room and saw him, he was blue. I said, “John, call 911.”

I told the nurse (who had already done a trach change to eliminate that as a problem and who had cranked up his O2) to hand me the ambu-bag, and I started bagging him. I speed dialed his doctor and put the phone on the floor on speaker.

Dr. G spoke calmly as I gave her an assessment of him- his sats, physical appearance. She ordered a series of breathing treatments which I was administering as the paramedics arrived.

The paramedics assessed him and took over his care. In minutes, we were loading him into the ambulance.

My heart raced as a paramedic picked up my limp son and carried him out. I followed, grabbing his red bag on the way out the door- the bag I had grabbed 100’s of other times that held his to-go supplies.

I got in the ambulance, realized I had no shoes, and yelled out to John to grab my shoes and my purse so I would have my ID at the hospital.

They were situating Mattie in the ambulance and stabilizing him.

I posted quickly to Facebook (a post that was terrifying to many of you, a post that was followed by my silence for over 12 hours), and I sent one desperate group text to family.

I yelled quickly at John to call Nick and Amy and tell them to come be at the house with the other kids to support Taylor and Isabelle. He jumped in the truck to follow the ambulance, as he dialed the phone.

We drove off. The driver asked if he needed his siren (whatever that status is), he was told no, we were stable. I held Mattie’s face. I whispered to him as I always did, that he was strong and brave and kind and good. I told him I was so proud of him. I told him to breathe, and then reminded myself to do the same.

I remember the feeling of helplessness. I remember the feel of his hair in my fingers, the blue of his skin, the stillness of his body.

They drove about 4 minutes down the road and before we hit the highway, everything changed.

Mattie coded. The sirens went on.

The paramedic handed me the ambu bag, and I continued breathing for my son. He started chest compressions, crushing my son’s tiny chest over and over again. The other paramedic was ordered to give epinephrine. He drilled into my son’s tiny leg. It blew in his leg, never making it into the bone.  Again he tried, in the other leg.

I cried out JESUS JESUS JESUS, over and over again.

I told Mattie to breathe.

We pulled into the ER dock, and they rushed him in. Everything in me was shaking. I couldn’t feel my legs. I grabbed my things and followed them.

I ran.

The shoes John handed me were Isabelle’s flip flops. They were too big and were tripping me up. I kicked them off as I raced through the electric doors. I ran bare foot down the hallway where they pulled up a chair for me outside his door.

I was watching my worst nightmare unfold.

Seconds after I sat down, John raced in and my face surely told a terrifying tale.

I don’t remember what I said.

Possibly something like, “This is not good.”

They worked on our son, shouting out orders that I understood. Each new order more terrifying than the next.

The paramedic walked out to leave. His face was sunken. He said, “I’m sorry.”

I wanted to say, “I’m sorry for WHAT! He’s not dead. He can’t be dead. Don’t tell me your sorry,” but I was silent.

I remember John and I saying, “This cannot be happening. This is a nightmare.”

And then it happened, the doctor came and said, “One of you can come stand by the head of his bed.”

“WHAT THE HELL? What the hell are you talking about?” I screamed inside my own head!

I sent John in. I had already put my hands on his sweet head and John needed his turn.

Moments later, they made room for me.

Then they stopped. Everything stopped.

“Time of death, 9:30PM.”

Everything inside of me revolted at the sound of those horrible, horrible words.

The machines became silent, and I watched as my son’s lungs voluntarily released the last bit of oxygen that had been pushed into them.

I cried out, “Oh, my son, Oh my son. My son. My son! No!”

John wrapped his arms around us both.

We wept.

John told me, “You’re not going to lose me.”

Significant words, a promise that he has kept.

And there was silence. Nurses who loved him came down from the PICU. They lifted our sweet boy into our arms and we rocked him for the last time.  I held him, then John.

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We made phone calls. The chaplain made phone calls for us.

We arranged for our children to come, so we could tell them something that would change their lives. So they could say good-bye to the boy who changed us all.

I’ll save that for another day.

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As I write this I stop every few moments to sob. This is the story I that has tormented me for a year. The story that has woken me in the night, drenched in sweat and tears. The story that has greeted me many mornings. The story that I have to will myself to stop replaying. This is the story that I must tell so that I don’t have to keep playing it over in my mind. So that the written words will somehow take the place of the movie in my head.  

If you listened, I’m sorry. If you listened, I thank you. 

I needed to tell the story. My story matters.

This is my truth. And it must be told. 

 

Nurture

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I was talking to John the other day about grief and lonliness, and I said to him, “I just want to be nurtured.” That’s a very vulnerable statement for me to make. It means admitting that I’m weak and needy.

Walking around with the weight of grief is much like battling an illness or a sudden handicap. You are stripped away of many of the aspects of what made you strong and functional before. You are now the needy one.

It’s kind of like the first time you got the flu when you were out on your own, either away at college, newlywed, or in your little one bedroom apartment all alone. And you whined, “I just want my Mom!” You want chicken soup and a cold rag on your head and the feel of her hand on your face. You want her to bring you books and magazines and put soft clean sheets on your bed.

You just want to be nurtured.

It’s an awkward, uncomfortable transistion to make when you are previously the strong one and suddenly you are so very weak.

You want to be “cared for, looked after, encouraged, assisted, helped, strengthened, fueled.”

Not fixed. Just nurtured.

And to be honest just like when you’re newly independent, away from your family and your mom can’t be there. There are times in grief when no one can be there. Times when it’s very lonely.

I am grateful for those who find moments in their lives to extend arms, words, and acts that nurture. A few of you who seemed to appear right on the heals of my cry, “I just want to be nurtured.”

Funeral Food

I was thinking about what to do for dinner on Friday (8/21). We set the day aside to be home together as a family and remember Mattie.

My lovely Amy is making bruch for us. We decided as a family that going out to eat that evening, being in public, would just be too hard. We decided take out would be in order since no one wants me to have to cook either.

In pondering take-out, and we still haven’t landed on this, we did determine that Jack Stack- one of Kansas Cities most popular BBQ spots and easy family style take out- is no longer an option for us. We made that mistake this summer and ordered it once.

It brought up all sorts of knots inside. One of us couldn’t even stay in the room while we ate because the smell was too big of a trigger.

Why? Why would we ever say “no” to this goodness.

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Doesn’t make sense, does it?

But this was our “funeral food”- what we had brought in for the post funeral dinner for family and close friends. And now and forever it will always be funeral food. I drive by this place multiple times a week and the whoosh of smell is still a grief trigger.

So there you have it, without being too snarky, if you are planning a funeral dinner (and I’m sorry if you are), don’t choose food from one of your favorite restaurants and ruin it for life.

Crawling Out of My Skin

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That’s how I feel, like I’m crawling out of my skin. Like I’m a snake trying to shed off this dry layer of skin and scales.

A year without him? How is that possible? How did we live? How did I remember to keep breathing in and out. Thinking about this loss in terms of a year- 365 days, 8,760 hours, 525,600 minutes, 31,536,000 seconds- is dizzying. It simply makes my head spin.

I’m not ready to face August 21, 2015. I’m just not ready. I’m not ready at all.

Did I say I’m not ready?

I’m not ready to look back on what it really felt like to live a year without him, and ahead to a year where he will not be here at all.

It’s not like I’ve been in shock or denial all year. Oh no, I’ve felt all the feelings. Every single one. The feelings are as real as my skin.

And here’s the kicker, it doesn’t stop here. One year is not a magic moment when suddenly everything is all better.

But I did it.I lived a year. I woke up, breathed in, and loved my family even in my utter weakness. I promised him I would and I did it. I kept living.

And somehow, I will do it again for another year.

Oh God, help me be brave.

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*there will be several very raw posts this week, I am sure. Thank you for caring and reading.

#rememberingmattie

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When life is lost, those grieving need to know that the one they love has not been forgotten. That the live that changed them, still matters.

8/21 is around the corner. It’s a day that I’ve been dreading. It takes my breath away to think that we have lived for a year without our sweet boy.

Please help us honor his life and remember him on 8/21.

I’m giving you a heads up now because I’d like to flood Facebook and Instagram with Selfies (you or you and your children). If you can include a Pinwheel in your Selfie that would be simply lovely!!!

Use the hash tag #rememberingmattie and please tell us how our boy touched your life.