Mattie’s Memorial Fund: Thanks and Update


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.


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.


There are numerous styles available at Mattie Breathes

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″


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



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)


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.


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.


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”.


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.”


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


 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


October 20, 2011



October 20, 2012



October 20, 2013



Almost 4



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.


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



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.


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.






Leaving Normal


Leaving Normal Sign

There is nothing normal about any of this, yet normal rages all around me.

I’m walking around in a “normal” world with a gapping hole in my heart.

I get on Facebook and the “normal” world makes my head spin.

I walk around Target, I stop to get gas, I go to the gym. All normal things in my very abnormal world.

I can’t watch the news.

I have no space in my brain for politics or ethical controversies.

I have to do normal things.

I have to make dinner and run the vacuum.

I have to try to run a business.

I have to help kids with homework and take them to swimming lessons and gymnastics.

I have to take a shower and get dressed.

I have to get kids on the bus on time.

And some days those normal things make me want to scream.

Normal RAGES all around me.

They tell me I will find my “new normal”.

I assume they are right.

I sure haven’t even come close to finding it yet.

I left “normal” 2 months ago.

And I feel like it’s going to be a long journey to find my new home.




Why Are You Here?


988679_10151587989483595_738925914_nI’m not sure how this works exactly, but I’ve been told it gets better.

Not easier. Just better.

I’m sure if you’re here for the long haul, you’ll see the shift, the slow and sure change from deep, unbearable grief, to sadness that lingers on for long months, to an empty spot that will change me forever.

I’m sure you’ll watch me transition from being totally broken, to being healed a little each day.

I’m sure you’ll watch me smile more and cry less.


We’re not there yet. We’re at the “holy sh**, this gets harder and harder each day” stage.

I’m not sure why you’re reading this.

Part of me fears that my blog is suddenly depressing, and you’ll tire of my naked heart.

Why do you read the ramblings of a broken woman?

Why do you?

Sure some of you know me intimately and you love me.

Some of you are my family.

Some of you are dear friends.

You won’t get tired of me. You don’t get to. You love me.

But what about you? You’ve never met me.

Why are you here?

Maybe you’ve followed our story for so long that it has become part of your own.

Maybe you fell in love with a little boy because of the words I’ve penned on these pages.

Maybe when I told you he was gone, your heart sunk to the bottom of your feet and you couldn’t catch your breath.

I don’t know why you’re here.

But I’m glad.

Thank you for listening.

Thank you for letting me grieve out loud.

If you want to tell me why you’re here, I’d be glad to listen.

It helps me.


It does.


From Ann Whiston-Donaldson’s blogpost on What You Can Do To Help A Grieving Family, #19 is really important to me.

19. Even if you didn’t know the deceased, consider sharing what the deceased means to you NOW. Eternal life is, well, ETERNAL. Jack’s life is affecting people in ways we could never imagined, and we are blessed that so many people are making the effort to let us know, through emails, blog comments, letters, or person. This helps ease the sting. Have you had a dream about the person who passed away? Tell the family.

 I’d love to hear your stories. How did my son change you? How did his life impact you? 



No Good Reason



There is no good reason why I randomly chose to rake up last year’s dead leaves from beside the front steps in my white sneakers,

Wearing a flannel shirt I grabbed off the floor this morning, not realizing it had smears of BBQ sauce on it from last Saturday,

In jeans that Aiden declares are old and should be thrown away.

It was something to do I suppose.

And who needs a good reason anyway.

I rake and think about the last time my boy sat in these leaves, these dead, crushed to the ground leaves,

Or had his picture taken on the front steps,

Or the last time he was carried down these steps to the ambulance while I ran after him in my bare feet.

There’s no good reason for any of it.

No mother should have to bury a son, and spend weeks and years of life with just memories.

No mother should have to, it’s just not natural.

Mary Beth Chapman said,

No mom can come up with words to express the ripping pain of losing a child . . . and no words can do justice to the mysteries of God in the midst of tragedy.

There are no words to describe what its like to have part of your heart torn out of your being.

There is no reason that a woman should be able to keep on walking and breathing when her son is no more.

There are things we will never know, never be able to explain, “whys” that will be asked, yet answered with deafening silence.

I don’t expect answers.

I do expect to somehow figure out how to walk and breathe again.

I expect to find a way to put one foot in front of the other and traverse across these twists and turns, these dips and divots, these hills and valleys.

The Eternal is my shepherd, He cares for me always.
He provides me rest in rich, green fields
    beside streams of refreshing water.
    He soothes my fears;
He makes me whole again,
    steering me off worn, hard paths
    to roads where truth and righteousness echo His name.Even in the unending shadows of death’s darkness,
    I am not overcome by fear.
Because You are with me in those dark moments,
    near with Your protection and guidance,
    I am comforted.
Psalm 23:1-4 (the Voice)

Yes somehow He is near. Thankfully He is there as I inhale and there as I exhale.

I don’t have much to say to Him right now other than, “Oh God, please help me.”

And I’m not hearing Him but I am feeling Him.

For if I did not feel Him, I would be not survive.