This is the ongoing story of our five year old son's battle with stage 3 Rhabdomyosarcoma in his abdomen. He recently earned his wings and entered the kingdom of heaven. He is full and surruonded by God's glory. He is our little hero and an amazing example of the adversity that children can overcome. God is our Healer, now that medicine is done, GOD will begin. All the glory belongs to HIM
Sitting on the floor in my bedroom, feeling
a bit deflated and thinking of you – as always. I am constantly moving about
trying to fix something, cook something, clean something or move something. And
when I sit down and the air leaves me lungs I feel like I weigh 500 lbs. I
don’t have the energy to move myself back up into standing and I can’t breath.
I wish I could cry. I feel sobs and sadness coming up; my chin quivers and my
voice shakes when I try to speak but no tears. Today is my birthday and all I
can think about is how much I miss you.
Life continues to move and everyday happens
whether I want to open my eyes in the morning or not. I put a smile on my face
and claw out of bed and begin each day. My emotions in the morning are like
arthritis. When my brain first awakes in the morning I am reminded that you are
gone and I am in pain before I ever even slip out of bed or peel my eyes open.
As I move about in the morning and my body lubes up and my brain is forced to
go to other places the pain numbs. I have a hot shower, get some breakfast and
the day moves full steam ahead as I involuntarily push you to the back of my
mind. And I am surprised that each morning pretty much the same as the one
before. Even today when it should be fun and exciting to have a birthday all I
feel is sadness and loss.
How we slept most nights
I was speaking to somebody the other day
about the grief process. It is true that the intense backbreaking pain I felt
in the first few months has subsided. But what has replaced it is this veiled
grief that I try to hide behind my smile. I have come to realize that there is
no “getting over it”and I will never “be better”. The necessities of life
require that I keep making my kids food, giving them hugs, loving their little
shinning spirits and nurturing their souls.But behind this mega momma persona and stuck on smile is a person who is
breaking each time she sits down to breath. I feel like somebody who has been
telling a lie and now I can’t untell it. Like when you first meet someone and
you forget to ask their name and now its gone on too long and you would feel
silly to have to ask them their name now, months or years later. I hide my
grief now because I feel like people would wonder about me, or the state of my
mental health if I told them how much pain I feel still. How much I yearn to
just lay in bed and do nothing. That if it wasn’t for Evy, Ryan, Josh and Chris
I may just jump off a cliff. That is how painful it is still.
Today is the last day of fall I think, the
cold and snow are coming tomorrow and soon I am going to hear, “When can we
decorate the house?” And I wonder how much I can do this year? I have tiny
moments where I see a beautiful decoration or hear a familiar Christmas song
and I get excited about the upcoming holiday season and then a stinging smash
in my face reminds me that everything about this holiday reminds me of you.
Christian I know you are close to God so I know that you know my heart. And as
much pain as I am in right now I know that you see all of me. You watch me experience
joy and laughter with the kids. You see my trying to be better, trying to hand
my worries and concerns over to God. I know the only answer to this deep soul
crushing pain is to invite God into my world of pain and ask him to heal me.
Never got enough of these
The other day I was encouraged to give my
worries, pains, fears, and inadequacies over to God. And I was angry because I
thought, “God knows my pain! He caused all of this so I shouldn’t have to
invite Him in”. Then He took me by the hand and asked me to go back to the hospital
with him. But instead of lying beside you and watching you take your last
breaths, we stood outside your room, He held my hand and we looked into the
window. I saw me lying there beside you holding you and I was seeing things
from His perspective. He reminded me that He watched His son suffer too. He
watched His son take his last breaths – He understood my pain. But I had to
trust Him that His view was so much broader and bigger than mine and if I
allowed Him to guide my pain and healing He would reveal to us the blessings He
has in store for our family.And I
realized that while I was standing their holding God’s hand tightly, Christian
was holding my other hand. And I knew that if I spent all my time stuck in what
I lost and can no longer have, I would never feel him holding my hand.
So each morning I invite God into my heart,
thank Him for waking up in the morning, thank him for the gift of my kids and
then I invite him into my pain and say, “please deal with this, I can’t but you
I listened to your video this morning. You
sang me Happy Birthday and whispered, “I love you”. I could almost feel your
bony-armed hug and skinny fingers on my neck. You look deep into my eyes and
tell me you love me and I know you still do. I love you to the planet Hoth and
You will be happy to know that Ryan has
wished me Happy Birthday about 20 times already today. Papa Norman sang a
lovely rendition of Happy Birthday and Grammy made me Waffles (in honor of you
I think!) Please stay close.