….and Mourn with Those Who Mourn

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“Rejoice with those who rejoice; mourn with those who mourn.” Romans 12:15

As a culture we are good at one, but we flounder in the face of the other.

We know how to celebrate new life, a marriage, and milestones in life being accomplished. We throw parties. Bring gifts. We dance. We laugh.

My friend Mary Ellen, in a chat about this on a Facebook thread, pointed out how odd it would be if when someone had a baby or got married all we sent was a note or a text that said, “I’m praying for you.” We wouldn’t do that. We know how to “rejoice with those who rejoice,” so we put on our Sunday best, we show up with a gift and we dance the night away. We stalk Facebook for those first wedding photos. When a friend has a baby, we throw a shower, we show up at the hospital with flowers and treats, we make sure meals come to the house the first few weeks. We know how to  “rejoice with those who rejoice.”

We don’t know how to step into grief.

We shrink back because it frightens us terribly.

We stop at the very thought of it happening to us. It’s too horrifying.

We freeze.

As my journey unfolds in an “out loud” kind of way, many of you have reached out to me in your own paralysis and have asked, “How can I help you?”or simply admitted “I don’t know how to do this with you.”

Several of you have done your own research and I love you for caring that deeply.

Many of you have asked me and my heart is so moved by your honesty.

Let’s figure this out together so we can truly learn to embrace the part of God’s heart that cries out for us to Mourn with Those Who Mourn.

And let me tell you a secret.

You’re not alone if you don’t know what to do. I haven’t always supported friends in grief well. I’ve tried and floundered. I’ve frozen too.

Here are some things that I am learning that are really important. 

1. I  need people to check on me and not just ask “What can I do?” because honestly some days I don’t know what to tell you. But I do need you. Ask me specific questions. Do you have groceries? Can I pick up milk and bread and eggs for you? Have your leaves been raked? Do you know what you’re having for dinner? Can I stop by and take your kids to the playground?

2. Don’t quit checking on me. If I can’t do something when you ask because I’m having a horrible day, ask another day because not every day is horrible. If I don’t answer your text, text me again in a few days, but don’t think that a lack of response is because it wasn’t important to me. Maybe it’s because I’m crying to hard to answer and by the time my emotions clear, I’ve forgotten that you even texted.

3. Please don’t tire of me sharing about my son. Celebrate with me. Talk about him around me. I have to talk about him because all I have left our stories and memories. Hearing you say his name is good for my heart. You won’t make me sad. I’m already sad.

4. If I smile, please don’t think that means “I’m getting better”. I smile because there is still joy in life, but every smile you see is moments away from a meltdown.

5. If you came to the funeral and signed the book or gave me a hug, I might remember that you were there. But now is when I really need to know you care.

6. If you brought me a meal or gave us a gift card the 2 weeks following the funeral,  I am so thankful. But at the moment, one of the most difficult tasks for me is cooking. I still need you.

7. If you think about me or pray for me, tell me, but more than that tell me what you are thinking when you think about me and what you are praying when you pray for me. I  need to hear your words. They need to be more than thoughts.

8. I’m not the kind of friend I used to be. Please have grace for me. I’m a natural caretaker and giver, but the last 4 years my life has been completely consumed by loving and caring for one little boy who needed most of me. I haven’t had time to reach outside of that space, and now with his death, I am trapped in grief. I need your love without strings attached. I need to know that it’s ok that I’m not ok.

9. Be careful. Be very careful that your words aren’t casual thrown out like a bandaid. You can’t fix this with a few verses or cliches.

10. When facing the loss of a child, grief is considered “fresh” for 5 years. Please understand, this isn’t getting better yet. Not even close. The first few months we were kind of in shock and numb. Everything is real now, very very real.

Thank you for coming along this journey and learning with me.

 

PS. If you have had a dream about Mattie that you would like to share, please email it to mattiebreathes@gmail.com 

Also If you have already shared a dream with me, like many of you have, please resend it to email. My facebook inbox is a pool of drowning messages! 

 

Merry Christmas, Mattie

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We had our miracle boy for Four Christmases. Four beautiful celebrations where his life was in the center of it all, swirling with joy and grace and beauty.

Our first Christmas, he had only been “home” at Children’s Mercy for a few weeks after his transport to Kansas City from Cardinal Glennon in St Louis.

We were surprise by our favorite nurse to discover our boy was oxygen free.  Little did we know that oxygen was something that would become a natural part of our lives.

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Christmas Number Two was our first Christmas at home! He slept through most of the swirl of the morning, but having him there in our home celebrating with us was our favorite gift that year.

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Christmas Number Three! The miracle continued. He was so strong and getting healthier by the day. A few months later he would be off that ventilator!

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Christmas Number Four! Oh my heart aches that this was a last for us.

He had shown us that Miracles Do Happen that year by coming back to life after leaving us for a moment.

We had much to celebrate.

He helped decorate the tree!

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He loved every magical moment of the season. He made it all extra glowy and perfect.

He filled our home with more love and joy that you can even imagine.

His space in the world was HUGE.

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And he wore his Fourth Christmas Jammies!

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He needed a jammie change that year, so he wore Aiden’s first Christmas Jammies too.

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This year should be his FIFTH Christmas. He should be FOUR years old. He should be going on a family adventure with us.

He should be grabbing things off the tree, hearing Christmas stories every night.

He should be going on drives to see the Christmas lights.

I should be choosing his gifts.

Instead we have a Memory Tree.

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It is a place for us to sit and reflect. It is a place for us to breathe in deeply and remember him.

It is a place to close our eyes and feel him.

So his stocking is hung. And it feels so wrong. So empty.

We miss him more than we could ever express.

We grief deeply.

I am learning that Joy and Grief can somehow hover very close to each other, trading places moment by moment.

A moment of Joy can turn into a moment of utterly grievous pain in a moment.

It takes my breathe and pins me down.

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Oh but LOVE.

We loved a boy. We will always love this boy.

And we continue to love and hold each other and try to find our way.

Would you consider helping us?

This stocking should not be empty.

Would you help us fill it with words?

We would be blessed beyond measure if you would mail written memories of Mattie to our home to be placed in his stockings.

Whether you met him or just followed his story, please share a memory or a story of how our son’s life has changed yours.

We would love notes and drawings from your children who have followed Mattie’s story too.

We plan to leave them sealed and spend some time opening them on Christmas Day.

Mail cards and letters to: Merry Christmas Mattie, 12312 Askew Street, Grandview, MO 64030

 

And as you celebrate this year, please hold your treasures extra close, please make memories that will last forever, please take photographs even if your hair is messy. 

 

 

Organ Donor

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They called his time of death and at some point in the midst of the swirl of nonsensical, chaotic minutes that passed, we were told matter of factly that our son had no viable organs to donate.

We brushed it off. We were clearly not surprised. A child with a patched up heart that had stopped numerous times and lungs that had been forced to work by my own hands, well of course his organs were of no use.

But what about that heart? Was it truly of no value to anyone? Surely someone needed a heart like that one.

You know, that tiny, scarred, battered heart. The one that reached into mine and made it stronger. A heart that knew nothing but love and joy. A heart that fought hard when everything seemed impossible.

What about you? Would you take a heart like that?

Do you need an organ donor? Because I have a beautiful heart to pass on. And guess what? It’s not first come, first serve. There is no pecking order.

You see, I cannot explain how one tiny heart has left such an incredible impact on the world. But it has.

So don’t let that perfectly beautiful heart go to waste. I’m his momma and I tell you, that heart is viable for transplant. It’s a good heart. It beats on.

Take it. Don’t my son’s life become a distant memory if it has touched you in any way. Take it. Don’t forget it.

There aren’t many hearts out there like it.

It’s yours for the taking.

A perfectly viable organ.

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My son. The organ donor.

Mattie’s Memorial Fund: Thanks and Update

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Many of you have asked how to help now and what our current needs are, so I’m sharing here.

We have been so blessed by the outpouring of gifts to Mattie’s Memorial Fund, meals, cards, gifts and words of love and support. We thank you from the bottom of our hearts.

We were able to pay for all of the initial costs of Mattie’s service and burial, and we are now left with the final cost of his gravestone. We have received a $1000 grant but are still short $3000.

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This is the photo that will be on his stone. 

For anyone wishing to give further to this expense, here are some ways that you can give.

The GoFundMe account is still active and able to receive funds. CLICK HERE

If you would prefer a tax-deductible donation, checks written out to Tekoa 211 and mailed to our home: 12312 Askew Street Grandview MO 64030

In addition the proceeds from the sale of Mattie’s Book and the “Don’t Forget to Breathe” apparel will also be put into this fund.

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There are numerous styles available at Mattie Breathes

DESIGNS FOR MEN, WOMEN and KIDS!!!
Our T-shirt sales goal is 300 shirts, we’ve only sold 30 at this point!! 300 shirts will cover the cost of Mattie’s gravestone!

FREE SHIPPING CODE for orders of 3 or more t-shirts!!

AND 20% off KIDS SHIRTS: Grey “MerryMattie” Black “MerryMattie2″
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Discount code for Mattie’s book is 10% off using BookForChristmas

 

Thank you all!

(and please, this was hard for me to write and share, so please no mean comments on this post)

 

 

My Big Hero

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This is not a movie review. It’s just me sharing a “God showed up and spoke to me moment.”

(and take note of the Spoiler Alert please)

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We went to see a movie last weekend. “Big Hero 6″. Maybe you’ve seen it.

Maybe you teared up a few times.

“Big Hero 6″ is the story of a boy named Hiro who loses his brother Tadashi. Tadashi and Hiro had already lost their parents and were being raised by a loving aunt.

When Tadashai dies, Hiro grieves deeply. He has faced way to much loss for a boy his age.

His brother Tadashi leaves behind a robot named Baymax.

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Baymax has been programed to heal.

He senses Hiro’s grief and tries to help him.

It is tender and moving and real.

As with any good movie there is a bad guy and he has an evil plan.

He steals Hiro’s invention and plans to use it for harm, not good.

In short, Hiro and his friends team up and use their scientific abilities to make themselves into super heroes to conquer the bad guys.

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They save the day, but in the end at the expense of Baymax losing his robot life.

Hiro is torn as he has to say good-bye to his friend in order to save the world.

But Baymax has only one purpose programed into him, to heal and save until his job is done.

As they face this climactic moment Baymax says,

“Are you satisfied with my care?”

Hiro knows that he has been well cared and is forced to say, “Yes”.

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And herein lies where my heart turned into a puddle, and I could hear my sweet boy say,

“Momma, are you satisfied with my care?”

You may think that Mattie was the one who needed my care. He was, however, the one with a very, very long list of medical needs, even labeled “medically fragile” by professionals.

He was, however, the one who was not quite four. He was the one who spent well over 500 days of his life in the hospital. He lived his days even at home needing 24 hour care.

Surely I was the caregiver, and he was the one in need. 

But that is not how it worked out. Mattie came to care for us. In many ways, we often say, “He saved us.”

He entered into our lives when we were grieving the loss of a brother. He took us in and with nothing but his pure existence, he loved us and change us.

I cannot recount the times, spoken and unspoken, when one of us would say, “I just need some Mattie time”.

What did that mean?

It simply meant that sitting in his presence brought light and life and hope and healing. 

This little boy was close to heaven so many times. He had be brought back to life several times, the first time when he was just 9 days old.

I know his spirit had tasted and seen what beauty was just ahead, and he carried that knowledge with him on this planet. He would often look into the distance at nothing in particular and just laugh deep belly laughs.

“What was he seeing?” we would ask. Angels? I think so. Something of another realm. The heavenly? I am quite certain. 

So when I close my eyes and imagine my sweet strong son ask me, 

“Momma, are you satisfied with my care?”

How could I ever say to him, “No son, you needed to do more, you needed to stay and love better.”

I could never. Never.

I have to say,

“Oh, sweet son of my love, yes I am satisfied with your care. You loved so perfectly well. You touched the deepest parts of me and made them whole. You changed your father and I and made us closer and stronger. You gave me back your daddy because your loved healed him. You change each of your brothers and sisters and taught them how to love. Oh sweet, beautiful, handsome, perfectly wonderful son, of course I am satisfied. So very satisfied with your care.”

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As Hiro says goodbye to Baymax, Baymax presses something into his hand. It is the computer chip from his chest that carried his “robot DNA”.

In the movie Hiro is able to recreate a new robot with this chip.

I can’t build another robot.

I don’t get my son back, but he has truly pressed his DNA into my hand, into our hearts, into the very fiber of who we are.

With his coming into our lives, he changed us; and with is departure, he is still changing us.

I believe the day will come when this present weight of grieve will lighten just enough that I can feel his presence in my life begin to outweigh his absence.

I can’t build another robot, but I can build a life where my son’s spirit is reflected in what I do, how I feel, the way that I love and the reason I keep living.

Happy Birthday, My Son

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 This is about all I can muster up at the moment, but there will be more to come.

We are celebrating Mattie’s 4th Birthday today, breathing in and out, celebrating the gift that we were given and mourning deeply that he is not here.

October 20, 2010

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October 20, 2011

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October 20, 2012

 

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October 20, 2013

 

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Almost 4

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Oh son, I celebrate your life every moment of every day.

I wake up and breathe in the pain and the miracle all at the same time.

My heart will be forever changed.

You gave and gave and gave, and you left your very spirit emblazoned on my heart.

I’m certain today that all of heaven is rejoicing and celebrating the silly brown eyed boy with the wild curls that blow in heaven’s breeze.

I’m certain today, the angels are rolling back their heads in laughter at the crazy faces you make as you chase them down.

I’m certain the Father of All has tossed you in the air just like your earthly father did and is whispering beautiful love songs in your ear.

I just wish I could see it all.

I wish there was not this great divide between heaven and earth.

Until that day, I close my eyes…… and I love you.

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If you would like to celebrate with us,  I would ask you to take a photo today with a cupcake, a balloon or a pinwheel to wish our little man a HAPPY BIRTHDAY!!! Use ‪#‎happybirthdaymattie‬ please on Instagram or Facebook.

I’m Not Mad At God, I’m Just Kind of Mad

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I’m not mad in the “crazy furious, angry” kind of way.

I’m not mad in the “out of my mind, insane, lunatic” kind of way. (at least not most days)

I’m really mad in the “this is not what I had planned, I feel gypped, this is not fair, scream at the sky” kind of way.

It’s not directed at God, this anger of mine.

It’s just there.

Mingled with overwhelming sadness like a casserole of emotions and everything is touching.

I can’t always separate sad from mad.

I wanted to see him walk.

I wanted to hear him talk.

I wanted to celebrate when he outgrew his need for a trach.

I wanted to see him get on the school bus. (ok, not really!)

I wanted to watch him kick a soccer  ball.

I wanted to see him make friends.

I wanted to watch him put his arm around a little girl and give her a kiss.

I wanted to take him to Target.

I wanted to go swimming with him.

I wanted to go to his first school program.

I wanted to take him to see his first movie.

I wanted to chase him in the back yard and hear him laugh.

I wanted to watch him go on a date.

I wanted to see him get a job.

I wanted to see him do so many, many things. 

I wanted to see him experience so many, many things.

I feel really mad.

Gypped.

We fought so hard just to live.

And we did.

So when I get mad. When I feel unbelievably sad.

Or when I feel like that emotional casserole is just freaking dumped on my head

I remember.

I got to read him so many books.

I got to watch him learn to crawl.

At one of his sickest moments, he woke up from death and signed “Momma”.

I got to teach him how to sit on a bike and work on pushing his feet.

I got watch him cruise around the kitchen in a walker.

I got to push him in the swing at the playground.

I got to take him on his first vacation.

I got to lay on a blanket with him at the park.

I got to give him his first bottle. 

I got to give him baths and put lotion on his sweet little body. 

I got to feel him touch my face. 

I got to watch him belly laugh over the silliest things. 

I got to celebrate four Christmases with him.

I got to throw him three birthday parties.

I got to put icing on his tongue. 

I got to see every silly face he made.

I got to watch him learn to clap his hands.

I got to be his mom for 1402 days.

And that is good. Very good.

But I’m still very sad.

And I’m still very mad.