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.