Dear Chronic Lung Disease,

Standard

When I first met you, you terrified me.

I had already met your friend, Heart Disease, the day I met my tiny newborn son.

The word “disease” is scary enough, but throw “heart” in front of it, and then “lung”; well you two were a terrifying pair.

I watched you play your games in my son’s body; the mean tricks you played on him; the way you messed with this momma’s head and heart.

I saw you tighten your grip on his tiny lungs, more times that I can count. You made him turn blue and gasp for life and breath.

You changed my life and made me fight harder than I’ve ever fought in my life.

Loux Family 039

Courtesy of Aaron James

 

You forced me to make decisions that no mother wants to make.

We upped you one, and our son received a tracheostomy.

Loux Family 042

Courtesy of Aaron James

 

Breathing became a little easier, but you still had more up your sleeve.

You caused his weak little lungs to become extra susceptible to illness and infection.

We faced setback after setback, but we fought you tooth and nail.

I learned how to force oxygen into my son’s tiny body when he turned blue. I learned how to operate medical equipment that shouldn’t be part of any child’s nursery.

Loux Family 026

Courtesy of Aaron James

 

But guess what?  You’re not the winner here!

My son fought and lived and loved his life.

He taught us all so much about love and joy and hope.

He proved that miracles happen. Yeah, remember that one time, you just made him quit breathing all together, that one time the doctors told us to prepare for the worst?

20130610-103352.jpg

Well, it seems you’re not stronger than a miracle.

You’re not stronger than faith and hope and love.

I learned a lot from you though, Chronic Lung Disease.

I learned that every life is worth fighting for.

I learned that I can do hard things.

And most of all, I learned that you did not define my child.

 

Loux Family 090

Courtesy of Aaron James

 

Dear Chronic Lung Disease,

I’d like you to meet my son. He is not defined by his organs.

This is Matthias Samuel Loux.

10671237_10152409523668595_553221923933272242_n

Photo by Tracie Loux

 

In the end, one day, his heart would stop because of the fast one you pulled on his lungs August 21, 2014.

But HE LIVED for almost 4 years in spite of you, and he lives on because life is stronger than death.

This is Matthias Samuel Loux. Lover of music and books and Mickey Mouse. Champion of laughter and big smiles. Known to turn heads and turn a dark day into light for those who were downcast. This is my son, Matthias Samuel Loux, my brave, beautiful, handsome son with deep brown eyes and a head full of soft, delicious curls. He had a crooked finger and lots of scars. He couldn’t talk yet, but he spoke loud and clear to anyone who glanced his way.

So you may think you’re powerful, Chronic Lung Disease, but this boy out powered you every day of his life.

You may think you have control of breath and life, but this boy taught us all how to breathe.

He was my daily reminder to breathe in life and soak up every moment with a grateful, joyful heart.

You may have taken my son’s last breath.

But you didn’t win.

Love won.

And Love taught us all how to breathe.

 

Should Have Beens

Standard

1939541_10152754886233595_2387271117105852804_n

 

Three years ago, I wrote this on Facebook. I was dreaming of the day my sweet boy would be free from tubes and machines.

I said I would weep.

I did weep.

And he is free.

But not this was not how I wanted his freedom to come.

Every day I marvel at his freedom.

Yet everyday I miss what should have been.

My friend Anna blogged today on what should have been her son Jack’s 16the birthday.

You can read her story and book review featured HERE today.

Her book Rare Bird has spoken to the depths of this momma’s soul.

10671237_10152409523668595_553221923933272242_n

So many “should have beens” in my heart today.

He should have outgrown his crib and needed a big boy bed. We were so close to that.

He should have had a bronchoscopy this fall that told us he was ready to say good-bye to his trach this spring.

THIS SPRING. NOW!!

That was part of the plan.

We should be freaking out about now, that in 5 months, he would turn 5 and start Kindergarten.

I was longing for the day when Mattie and Aiden would share a bedroom and get into all kinds of mischief.

I imagined it often. Dreamed of it for so long.

It should have been.

He should be almost walking. He was getting so close.

And he is, but I didn’t get to see him take his first steps.

He would have eventually learned to speak.

I should have been the one to hear his first words.

As the days, and months, and soon years go by, there will be many should have beens that my heart will mourn.

I did weep the day the tubes and machines were gone.

I did weep the day my son became free.

And I still weep.

Just not the way I imagined it would be.

 

 

 

His Kindness Reaches In

Standard

I haven’t been able to listen to what some might label “worship music” for many months now- since the funeral actually. I know many of you have sent me links and videos to encourage me and I’ve “liked” them or thanked you; but truth be told, I haven’t been able to click and listen to any of them. It was just too hard for me.

But today for the first time in ages, John put an album on in the car and said, “It’s time to listen to this.” And in moments, I heart the familiar sound that has been my lifeline for several years now. Songs that held me up during my weakest moments in our journey with Mattie. As this song poured through the speakers of our truck today, my heart was able to rest.

Resting in Your promise
I will rest within the knowledge that You care
I put my trust in You

Deep within the darkness
Through my enemies surround I will not fear
I put my trust in You

And when I don’t know what to do
I will fix my eyes on You

You’re my defender
I hide my hope in You
You are the loving arms my broken heart can run to

I will remember that there is nothing You can’t do
For You are God, You are good
And I surrender, You’re my defender

You are strong when I am weakest
You’re the peace that passes everything I see
I put my trust in You

I’m surrendering completely
Laying all my cares here at Your feet
I put my trust in You

A mighty fortress is our God
I will not fear, I will not fear
Safe and secure here in Your love
I will not fear, I will not fear

– Chris McClarney
(listen HERE)

I took a deep breathe of hope and remembered countless times this album had played at the foot of my son’s bed through very dark times.

Times when I was too weak to pray, this song was my prayer.

And then this song came on, co-written by my husband John, his best friend Dave Fitzgerald and Chris McClarney

You won’t back down
Your name is faithful
You never fail
You are able to complete
All You began in me

I cannot hide
You know me better than I know myself
You cannot lie, You know my shame
Still, you call me beautiful

Only You can open my eyes
Through every failure, through every lie
It’s your kindness, Lord
That leads me to the truth

You’re still saving me
When I lose my way in the night
All my fears are lost in Your light

It’s Your kindness Lord
That brings me back to You
You’re still saving me

In You, in You, I delight in You
I lift my eyes to You
In my help it comes from You
(Listen HERE, this version on our Dave Fitzgerald’s album, Hope of Heaven)

His kindness has reached into our hearts these past several days.

He has never failed, even in the depths of the darkness, He has been present.

If you need something to hold on to, something to speak these truths into your own heart, I encourage you to get this album DEFENDER, it has been my lifeline for 5 years.

“The Buddy of Christ”

Standard

I’m going to preface this by saying that I believe with all my heart that sometimes God speaks to His children in very clear concise ways so that others can be encouraged or comforted. I also think that for those who hear from God in this way, “hearing” is a gift that should be treasured and guarded. I’ve seen and heard plenty in my day when it comes to hearing from God. There are times when it is best to be silent and simply pray when you  feel you have”heard from God” about someone’s life, but there are times when speaking is absolutely the most loving choice. It takes a wise individual to know the difference. 

————————————————–

So the other day I wrote this on Facebook:

And then something like this happens:

So at Chick-fil-A tonight a man near us motioned to me and commented on how sweet Aiden was and that Aiden had waved at him etc…. we had a little small talk, but I got the sense he was headed somewhere with his conversation……. eventually he said, “As I saw your family, I sensed a feeling of deep loss, but knew to tell you that you would heal. And I heard the laughter of a child in heaven over you.” ‪#‎missingyouson‬ ‪#‎mattielaughs‬

So there it was. WOW! Words. Just so encouraging and comforting in the midst of our grief and pain.

We chatted there in Chick-fil-A for a few moments with this gentleman and his wife. I found his wife on Facebook and discovered they were pastors of a church about 30 minutes away.

I wrote to them later that evening and thanked him for sharing with us and being brave enough to reach out, and I sent a picture of Mattie.

11042113_10152729800188595_1552761464_n

A few days passed and he connected with me again and asked if he could send me an audio clip that expounded on the thoughts and feelings from our meeting at Chick-fil-A. 

I gladly received it and listened this morning in the quiet of my living room after the children were off to school.

I nearly fell off my chair, hearing it again, in more detail.

I need to share this with you.

This is what was sent to me today:

I walk in and sit down next to you guys.

And immediately it’s like I saw that you all carry an atmosphere of the Father’s heart. It’s like this parental dimension of God’s heart. But the best way I can explain it, is this atmosphere that is conducive, that really emanates the Father’s heart and the Father’s love.

I sat down and was thinking, “What is this?”.

And then Aiden waved at me and I thought, “That is so precious and sweet,” and I teared up.

Then I saw your husband, and I saw this mantle of a psalmist, and I could see you unraveling poetry, coming right out of your gut, Like John 7:38 “Out of your belly shall flow rivers of living water.” So I could see poetry flowing out. I could see this flow of life. It was real unique because what I saw was this inverse type perspective where you were able to see such life and such pain. Where you were able to see such depth and such struggle. Where you were able to see such meaning in the midst of perplexing, paradoxical type situations that should break people down, but you were able to find beauty. I felt like all this was stirring in you. The first thing I could see was a guitar that was being played and I thought to myself, “Man, this guy is tremendous, not just musically but in the heart.”

And this was all in a millisecond, and then as I scanned over your family, thinking, “What is it about this family?” And the first thing that I saw was that you had- I knew within the last year, maybe even 6-9 months before- that you had been through some kind of a major loss. And knew in my spirit, I saw you guys, struggling to mourn. Like it was a blindside.

But in this great loss, I felt like God was saying “NOPE, I’m not going to let depression settle in. I’m not going to let hopelessness settle in. I’m going to heal this situation.” God was saying, “I’m going to heal.”

Well, at that time in my spirit I just dig in and was like “Well what is this huge loss? Is it a job? Is it a house? Is it a…” And the best way I can explain it is before I even heard anything technically, I saw, almost in a vision, Jesus in different places in heaven, almost like a real fast forward video of him in different places. And there was a child that was with him. And this child it was almost like he was being spoiled. It was like he had special access to certain things. Almost like people weren’t allowed to go in here, go in there, but you’re just a little baby, you can go in, you can access all these things.

Interjection from me: What I want you to know is that the language of these words is very specific to our family. We joked often about how Mattie could get whatever he wanted because, well because he was “Mattie”. We considered him the “center of attention”, and yes, joked about him being “spoiled”, only it wasn’t much of a joke. One time I gave him a time out, ONE TIME, mind you. It looked like this! 

944615_10151578756733595_424649834_n

 

So to say he could “access anything”, you must understand what it is like to have a child like this. A child who stole our hearts, changed our lives, gave us more than we could have ever given him. 

Loux Family 090

And he continued……..

 

And I had this thing, like there is a child that’s gone to be with Jesus and Jesus gave him access. I could hear him, laughing in a real clear, distinctive laughter. It was really clear and I felt like the clarity of his voice was very significant. And the fact that he had a voice, and there was like this atmosphere of joy just flowing right out of him. It was so cute because the best way I can explain is, that he was best friends with Jesus.

As you know Mattie was only able to “talk” on rare occasions. For a brief period of time, he could talk or “sing” or laugh over the vent. Mostly he sang. It was precious and didn’t last long because as he outgrew the vent, he was no longer able to make sound. One of the things I have thought about the most as I think about heaven, is that Mattie can talk, can sing, can laugh. So to have this man emphasize the clarity of Mattie’s voice was HUGE. 

1230005_10151607469188595_1059336237_n

 

And he went on…..

Jesus was walking with this child and he was holding his hand, and it was like this “best friend” friendship. This child was an adventurer! At the time I couldn’t tell the gender (he or she), but obviously now you have told us it was your son. In the vision, I couldn’t make it out, but what I sensed in heaven was that the child was made of the same nature as Christ. It’s hard to explain, I’m not trying to bunny trail here, but it was the strangest little detail that I remembered. It was like what gender is this child, well no, this child is like Christ. He belongs to Jesus.

Again I must share. The love and adoration that we had for this little boy is unparalleled. We would almost joke and say, “Son, I know it’s sacrilegious and all, but you are quite like the Christ child.” We would in biblical language tell him he was “the fairest of 10,000″ and we nick-named him “son of sons”. 

I mean, come on, do you see what I mean?

988679_10151587989483595_738925914_n

 

And then…..

This child has special access. Almost like he was his right hand man, like the right hand man of Christ. (Chuckle) I know that’s not technically a position, and I’m not trying to create bad doctrine here, but it was like Jesus said, “Come on, you’re my Buddy and I’m gonna hold your hand!” And I could hear this child laugh, I could hear laughter and I knew that it had to do with you.

I about FELL OFF MY CHAIR!!!! He could have had NO IDEA that our sweet son was called “Buddy” by Aiden, ALWAYS, as well as us, much of the time.

As a matter of fact, the term “Buddy” is only used at our house in reference to Mattie. Aiden stops us quickly (and always has) if anyone else is even momentarily called “buddy”

11024677_10152717695338595_4529633860129747123_o

And I say all that to say, yes I saw all this, but it’s not until I can stop and kind of study that panoramic picture as my mentor puts it, to explain what I see and more is drawn out. But basically this child is the “Buddy of Christ”, not the Body, but the BUDDY. He’s Jesus’ Buddy. It was like this comforting thing that there was a voice that could be heard, a voice that could be understood, a voice that could be used speak to Christ, and he and Jesus communicated a whole lot.

11026077_10152717693603595_3816382396426490188_n

I felt like this whole thing has been used to set a fire in me to share these types of visuals, but I felt it infused me with a lot of insight on how close heaven is to us, how close an answer from heaven it to us and how powerful one snippet of perspective from heaven’s view, what all it can make a difference. The church of heaven and the church of earth are so connected, and your little guy is now the church of heaven, and he’s connected to the church of the earth. And I felt like in this case, God was wanting to comfort you.

553349_10152717695143595_5432643835822876714_n

 

So let this be an encouragement to you, as it has been to us. God is there. He is listening. And sometimes, He brings heaven to earth, if but for a moment to give us hope.

Our deepest thanks to Pastor Ceasar Nieto, who we now are blessed to call friend. 

Thank you for loving bravely. 

Much Love,

The Loux family

Skinned Knees

Standard

A question was posed for discussion online recently about prayer, it ended with “….Is He incapable of moving with out man’s prayers?”

I know that we have been given prayer as a gift, a way to communicate with God, but I’ve learned a lot about prayer over the years.

And my views have shifted as I have learned to view God as “Father”.

What I do know is that God’s love for me and His ability to intervene in my life, to lead and guide, to help and care for me, is NOT dependent on the length of time I am able to devote to prayer, how spiritual my prayers are, or if I even have a clue what to say to Him. I have had seasons where prayer was active and alive in my life, where I was able to devote large chunks of time to prayer; and I have had seasons where my prayers are more like a breath or a groan, occasionally a “Help, God.”

He is a Father and He loves like a Father. He moves in our lives like a Father.

If one of my children trips at the playground and falls, followed by tears and that familiar grasp of the knee, I don’t sit by and wait for them to come to me. I don’t sit there for 5 minutes to see if they will cry out for me an appropriate amount of time before I respond. I leap up at the first cry. I leap up at the first sign of a fall.

It’s simple. That’s what any mother or father would do.

I’ve tripped and fallen, my knees are battered and bruised. They are bleeding and I am in pain.

Many of you have fallen in your own way. Many of you are hurting and in pain.

Guess what? We have a Father who comes running right away.

The minute we utter the first groan, the minute He sees our body hit the pavement.

Today God is not waiting for me to get up out of the dirt and drag my hurting self to Him.

He has come down into the dirt with me.

He is not asking me to talk, He is just here.

He is not waiting for me to explain to Him how much I need Him to rescue me, carry me, hold on tight to me.

He is just there, being a Father.

This healing isn’t going to be a quick one. I’m bleeding still.

I know He is there, even though it’s kind of quiet.

He lets me yell at him and tell Him the pain is too much.

He is familiar with my pain.

I know God loves to hear from us, loves to have us express our hearts and ask Him questions. But as a parent (and since He is a Father), I also know that sometimes children don’t have words. Sometimes children just need us to be there.

Sometimes this child just needs her Father to be present in the pain.

Grief can’t be fixed. Grief must be felt.

So here I am with my skinned knees.

And He is here.

 

 

Oh, My Son

Standard

11009864_10152708090198595_2152909138401986364_n

Holding a child’s broken heart in the palm of my hand may be one of the most difficulty parts of my journey through parenthood.

Yes, I have 6 children who are all carrying grief in different ways; and in the midst of my own pain, I carry theirs as well, yet never has the job of loving my children been a burden.

How could it be? How could I ever begrudge rubbing salve on bleeding hearts and bandaging up torn spirits.

My Aiden’s grief is like a gaping wound at the moment and it feels like there isn’t enough salve in the world to ease the pain in his heart, nor enough gauze to wrap around his torn and bruised spirit.

He speaks of his pain in simple words, “I miss Buddy”, countless times each day. But his tears and his sweet sad face speak volumes. His best friend is gone. Buddy, who knew him intimately and had the key to his heart, is no longer by his side, wrapped in his embrace; arms tangled in love, so connected that they seemed as one.

8560_10151502701128595_1709127285_n1378850_10151708239998595_310375249_n424067_10151223764098595_373908188_n998117_10151483553033595_2050105308_n

Unspeakable really. A relationship that involved few words. Aiden would chatter away with his beautiful broken speech and be fully understood.

Mattie would answer back with his eyes, a tilt of his head, a furrowed brow, or a head fallen back in laughter.

And Aiden knew.

Aiden spoke Mattie’s language.

Mattie knew Aiden’s heart.

1004510_10151578578928595_829983009_n537130_10151392658393595_1663414071_n6082_10151044008868595_1436672941_n61448_10151629176768595_89759138_n

And here John and I stand with a jar of slave and a roll of gauze, and it just feels like it’s not enough.

This is real.

This is honest.

This is the pain of parenting children through loss.

 

Please no advice, just please trust us that we are walking through this together and getting everyone the help and support that they need. Just keep praying and sending thoughts of love our way.

“The Castle and the Crane” guest post by Nicholas Dean Loux

Standard

Today was our trip to Magic Kingdom and though my words are still stuck in my head, my son, Nick, shared this today.

image

“I haven’t written much about my little brother Mattie, and I haven’t cried about his death for months. But  today, as I’m greeted by a parade of smiling, dancing Disney characters, and a chorus about dreams coming true, I feel a familiar pressure rise underneath my eyelids. The kindness of Mickey Mouse, Goofy’s playfulness, Stitch’s mischievousness, and the quirky gurgle of Donald Duck’s voice rush together and spark memories. Each unique characteristic sculpts a transparent image of my little brother.

I bare down and tell myself “Don’t cry, you’re at the ‘Happiest Place on Earth’.” The character filled caravan passes, and I see in the distance the ever majestic castle with an unfamiliar addition. A construction crane juts out behind the beautiful spires. At first it’s just an eye sore. Then it becomes a perfect representation of how this day feels; a beautiful and fanciful sight, juxtaposed with the reality that all is not right in our magic kingdom.

But I embrace the beautiful things with broken ones and I ride “Thunder Mountain”, eat over-priced food, see faces I’ve only seen on television come to life, and I believe that, even if all my dreams don’t come true, I have a guarantee that I’m gonna see my brother, Mattie, one day in the most magical kingdom of all.”