My PTSD

It's about 1:00 am. I've been up for 20 hours. So you would think it crazy that I sit here in the dining room, in the still of the night, questioning what we went through nine months ago. And yet here I am. Shaken. Traumatized. Unable to sleep. Tears streaming down my cheek. 

For the heroes of war who come home battered, bruised, and beaten, it's a long hard road. And I do not speak of the wounds you can see. I speak of the wounds of the mind and soul. These courageous few return with scars that are so tender, you are never sure what will set them off in pain. A loud noise. A name, perhaps. Nevertheless, terror, sadness, and fear set in. 

Tonight, I am a soldier who's faced war. I write this hesitantly, having no desire to belittle PTSD. On the contrary. I aim to acknowledge it. 

My war may not have been fought with guns and missiles, but it was fought. My weapons were long hours of sitting, feeling helpless, looking at Molly as she tried to raise her hand to her mouth to eat. The very hand that was drawing chalk on the driveway only months ago. The wounds on the day I had to force my six year old to use diapers again because she could no longer control her bowels. The child that hadn't wet her bed since the day we said "potty trained".

My battle was fought on the forefront, sitting at the window, next to her hospital bed as she lay with very little life left in her. Fingers blue. Grey skin. Beauty gone from her. Because death is so very ugly. 

I try so very hard to not dwell on those last days, but then I snap. A smell, a conversation, a picture... and of these can set me off and then I'm right back there. In the battle. Not sure what is reality and what is not. All I know is the gripping pain and feeling of grasping overtakes me and I can't breath. I can't look away. I must take it in. Sheer trauma and I'm drowning in the midst of it. 

This is my PTSD. This is what I have. I can't help but feel so incredibly cheated from an existence that I made up in my head. A place where my family would be whole and healthy. No one promised that. And I know there are many wonderful promises were made that will never be broken. But I want to hold onto that made up one for just a moment and cling to this fake truth. Just for a minute or two. I'll let it go soon...

Here we are, almost nine months from May 24, and it's being lived all over again, at least in my mind. 

For those of you reading, who have not lost a child, particularly to brain cancer, please know that I haven't gone off the deep end. Or perhaps I have, but I'll get to the shallow end soon. 

But for you parents that have, and know just what I am talking about, all I can say is that I am so sorry. There are no words. 

RIP

So I am starting this particular blog like no other. For it's this morning that I really don't know what to say. I just know that I need to write. 

It's been a very hard few weeks in the DIPG community. And even as I type this, I feel like these words leave my mouth way too often. 

These three beauties have so much in common. They are all girls that loved color, fun, and giggles. They all lived in Florida. And now, they all are healed in the arms of Jesus after a long, treacherous battle with DIPG. 

Really only those who have loved a DIPG child and been by their bedside can know the horrors of the disease. It's very nature is brutal, stealing away all signs of innocence and bringing about merciless madness. 

And yet I find that these little bodies whch must endure such a thing, continue on, fighting hard for every little smile.
We said good bye to Lillian Grace and Emma last week. And now we say good bye to beautiful Keira, all friends, all fighters, and now all together again.
I'll say it, though it needs not to be said: I hate cancer. 

With each loss, the scar that begins to heal is ripped open to expose a bloody wound. The death of Molly is brought up to the very surface and I am reminded how hard those last days were. 

The only good that I can see out of any of it is that because I loved and lost Molly, I can empathize with these families like no other. Not a group I really wish to be a part of, however, I understand. Therefore my hug perhaps, means more. My words maybe won't be wrong. My look is not pity, but understanding. 

Sigh.  

Are you a contradiction?

It's always boggled my mind when I hear stories of great terror, despair, and anguish turn around to ones of peace, hope, and joy. Many know the story of  Jim Elliot, how he was murdered for sharing the Gospel. His wife, Elizabeth, overcame this heartache of loss and went on to lead many to the Lord, whether directly, or because of hearing her testimony years later. 

This brings me to the story of Moses and the burning bush. 

When Moses, really no one but a Shepard at that time, was going about doing his daily tasks, saw from afar a burning bush, he needed to check it out.

Exodus 3:2-3 ~ "And the angel of the LORD appeared unto him in a flame of fire out of the midst of a bush: and he looked, and, behold, the bush burned with fire, and the bush was not consumed. And Moses said, I will now turn aside, and see this great sight, why the bush is not burnt."


 I suppose a bush that is on fire is not the rarest of things to see, but what was truly amazing was that it was not being consumed. Still very much alive and green, it was not dying under the heat of the flames. 

This was truly a contradiction. 

How many times do contradictions in this world get our attention? How often do we see a mother at the grocery story screaming at her child to get some control and behave, and yet, she herself shows no control? (By the way, this refined mother never does this... in the grocery store. In my home, however, that may be another story.) Or how about the very idea of being infuriated by one who breaks the law at our expense, but yet, we don't blink an eye at  driving 70 m.p.h in a 55 m.p.h. zone. Both contradictions. Both get our attention on a normal basis.

But the kind of contradiction I want to focus on and the one that we see here in Exodus is the one that leads to a good thing. The type that gets ones attention and then brings out the good.

If God would not have displayed such a thing in the view of Moses, perhaps he never would have known what God had planned for the people of Israel. Yes, I know. God's plan is always going to come to pass, whether we get involved or not. But even more so my point. Look at what Moses would have missed out on if he wasn't flashed something so unusual, so bizarre.

I'm convinced that God wants US to be contradictions. Walking, talking, breathing contradictions. Not in the negative sense, of course. But in the sense of making heads turn, directions changed, and lives altered because they see what is being done in us. Through us.

What if, like the burning bush, we all did what was not expected of us when under fire.

Maybe your burning bush looks like a smile when really all that person deserved was a slap in the face. (Or at least that would be your initial thought. ) Or perhaps your burning bush looks like a woman, staying in a marriage that doesn't always feel like heaven, in fact, it rarely does. But she does it joyfully and lovingly because she made a commitment.

Or as I have seen in so many this year, maybe, just maybe, your burning bush looks like a thankful heart in the midst of crushing devastation.

I have no idea what you are going through, but I can't help but think that God desires all of us to be a contradiction. Why? So that they that draw closer to you will see the real reason you are not being consumed by fire. God is in the midst of that fire and He's got you. 

Trimming the tree

The girls asked to put up the Christmas tree earlier than we normally do this year. They have been eager to see the lights, hang the ornaments, and let's be honest, get some presents. 

I wasn't so sure. 

Pulling out all the Christmas boxes wasn't the problem. Neither was putting together the big, heavy tree. What my issue was stemmed from the heart. 

As we began to unwrap each ornament, the excitement increased. I am pretty sure the volume jumped up a few hundred decimals. 

And then, there it was. The very ornament I thought would break me. 

Wrapped in the box was a note from myself that I wrote last year as I packed it away. It says, "It's going to be alright. God hasn't left you. <3" 

Last Christmas, as we decorated, we knew deep inside that it was our last with her. I actually wrote about it here. But you are never quite sure what that day will bring. I'm glad I wrote the note. It was a sweet reminder of how God was holding me in His arms then and I am in the same exact place now. Still 100% dependent on Him.

We finished decorating the tree and as we stood back to admire our masterpiece, Clara smiled and looked at me. "Mom, don't judge me. But I might cry. I'm just so happy it's Christmas." 

Ah, there it is. The delightful though, out of the mouth of babes, that we will have joy this season. We will get through it all. Yes, we will be sad, and if I was honest with myself, I have already shed a bucket full of tears. But that's OK. Because once I pull myself together, I am able to sing a song, tell a joke, and even bake a cookie. 

We will make it. 

RIP Julie

Julie Beth Little, as we once knew her, left this world on June 17, 2014.

Due to an unforeseen illness, a beast of a cancer, her life was taken away as she watched her baby girl slowly fade. 

Once the life of the party, she now dreads social events and really has to pull all her energy out to endure them. She often would feel comfortable talking to people in large crowds, but no longer. Instead, her appeal to social situations in large crowds has left her. She enjoys the quiet, one on one situations of truly getting to know one's soul. It's all she can handle. To focus in on one person and see who they are and where they are at. 

Before, she was blind to the world of pain around her. Oblivious to others suffering, she happily lived in her bubble of  security, assurance, and routine. But now, she no longer is blind. Death has brought to her light. And she can not look away. 

Never one to cry in public, she no longer is who she was. Gone are the days of holding it together. Now, tears freely fall and she doesn't care who sees them. 

Julie was notorious for enjoying the moment and living in the now. She loved to fully enjoy the happiness of it all. No longer. Forever will sorrow be intermingled with happiness. Now, she knows what true joy was, and what it could be again. With that sorrow comes a gift of hope and appreciation. 

Previously, she did not know what true living was. Not until she died, did she understand life. For in death, she sees that life is about Him. Hope, love and mercy are the foundations of all things. 

So even though we mourn the death of Julie, she is in a better place. She knows that even though there is suffering, healing is around the corner. Even though there seems to be hopelessness, it's never forever lost. And even though everything is mingled with pain, there will be one day a time with no more pain. 

Heavenly minded

The conversations around our house have drastically changed since Molly went to heaven.

"What is heaven like? What are they doing in heaven? Do you think there are cockroaches in heaven?"

Never before was my mind so heavenly minded. Singing hymns about heaven and hearing the trumpet blow immediately send tears down my cheeks. I was never like this before. Of course, I felt emotion when singing, but now, it's so much more real to me. 

It extends so much further than this, however. It has spread to my entire family, including the girls. They constantly talk about heaven. How they can not wait to see all that Molly is enjoying. How they wish to be there now with her. 

Clara constantly wants to send things to Molly. From artwork, to pancakes, she is always on her mind. 

What a blessed gift we have received from our Lord. Not only the hope of heaven, but the constant placement of heaven in our hearts.  I of course long to run into the arms of my Savior and bask in His love and grace for eternity, but I would be lying if I didn't say that these days, I am just as excited to run up to Molly and give her a hug. 

When we look back at all she endured and the suffering that she had to go through, I feel somewhat guilty that she had to face that so that I could freely enjoy these amazing lessons. But I remind myself that God has a plan for every soul and I can imagine Molly telling me that she was so happy to serve Jesus however He decided.

So as I go about my day, my head may be in the clouds, but I don't think that's necessarily a bad place to be. 

I wish...

I wish…

…you could have seen today with us. The sun was shining and perfect. The clouds were white and fluffy, just how you like them.

I wish…

… you could have come down the stairs like you always do, excited to see how we decorated for your special day. Bouncy. Hoppy. Giggling. Messy haired.

I wish…

… I could have watched you open your birthday presents with the same twinkle in your eye and gratitude you always possessed.

I wish…

… we could sing ‘Happy Birthday’ to you just how you liked it, including smelly monkeys, silly faces, and cha cha chas.

I wish…

… I could hug you, even for a moment, and tell you what an amazing person you are.  If only I could share with you the countless lives you changed because of your strong spirit, determination, toughness, and sweet smile that all who have ever met you immediately fell in love with.

But I know…

… that you are happy.

I know…

… you are where you are supposed to be.

I know…

… that you are somehow involved  with the biggest, beastest, animals in heaven. And you are tenderly taking care of the smallest ones as well.

I know…

… that you always loved us and that is forever sealed.

I know…

…that no amount of time and no number of birthdays that pass will ever, EVER diminish, change, or lessen what you are to me. Because how can anyone forget a piece of their heart?

I wish you a happy “forever six” birthday in heaven. And I know that one day, we will celebrate for an eternity.