That's the choice I tell La Petite Belle she has when she wakes up in the mornings saying she can't do this for another day. I ask her what the alternative is. There are only two choices right now: fight or die. If you're not going to fight, if you're going to give up, then the choice is death. If you say you're going to fight, it's going to be hard, REALLY hard, unbearable at times, but you have to push through.
I say this to myself every day when I wake up with tears streaming down my face, knowing I also have to face another day of this ... a day of watching my child hurting, a day of no answers, a day of not knowing what the future holds, a day of waiting, a day of heartbreak over what has been stolen from my sweet girl and our family. I cry. I wipe the tears away. I ask God for help. And, I get up again.
Is it hard? Absolutely.
But, I have no other choice. I have to fight for my daughter, as she fights for her life.
I am weepy as I type this because it is exactly a year ago today that I rushed La Petite Belle to the ER after lab work ordered by her doctor. (You can read the full story and her diagnosis here.)
This was the picture I posted of her that day. I scarcely can remember this fun-loving girl. Chronic pain and near-death experiences change a person.
When I've asked La Petite Belle, after she says she's scared, about what she's scared of ... fighting or dying, whatever it may be, she says she's not afraid of where she's going, just afraid of being without us. Oh my heart. And, this is why she fights. She said she would live every day in pain if it meant she could be with us. Oh my heart again ... aching, breaking.
There have been many ups and downs, many tears shed. Just when I think I have no more tears to shed, they come again.
I have had a broken heart before ... many times. But, never like this. I feel my heart break a little more each and every day. I think it's not even a heart anymore, but just crumbled pieces of what it used to be. Unrecognizable.
I am unrecognizable to myself. We are all unrecognizable at this point. I have lost my passion for anything. I have no desires, no wants. I feel dead inside. My only desire, the only yearning of my heart is healing and health for my girl.
There are honestly days where I do feel hopeless, despite the fact that I know God is very present with me. Despair has become my closest friend. It's a very dark place to be. Lonely. Waiting for God to move, to answer, to provide the promise, to heal.
I'm sure you are appalled that such a "strong" Christian could be in such a place. But, I'm here to tell you that it happens. And, it happened to so many in the Bible who were close to God.
David wrote this and it so adequately expresses my inner self at this moment:
Day and night, I have only tears for food, while my enemies continually taunt me, saying, "Where is this God of yours?" My heart is breaking as I remember how it used to be. I walked among the crowd of worshipers, leading a great procession to the house of God, singing for joy and giving thanks--it was the sound of a great celebration! Why am I discouraged? Why so sad? I will put my hope in God! I will praise Him again--my Savior and my God! -Psalm 42:3-6
The enemy taunts me, asking "Where is God, your Healer? Why would He allow this? Why would He not rescue your daughter from such pain? Where is He?"
My heart breaks a little more each day and I'm reminded of our life before this.
I'm reminded of the years my family has served in ministry.
Our life has become something we don't recognize nor understand.
I'm reminded of all the truths I've learned throughout the years of serving God.
Yes, I am discouraged and sad ...
BUT STILL, I put my hope in God and praise Him for who He is.
No matter what, we will praise Him. No matter what, we will serve Him.
That's not to say we don't and won't hurt, but STILL we cling to Him.
It's the only thing we know to do. We know He is faithful.
La Petite Belle continues to fight as hard as she can against something fighting so strong against her poor body. We are into our 4th month inpatient and extremely heartbroken and frustrated. She continues to have some bleeding in her GI tract, but no specific spots where they could be cauterized to stop it. Her gut is just oozing. This is all still a result of the GVHD. Her pain is still severe, related mainly to that darn BK virus affecting her bladder. Her spasms and stomach cramping is excruciating. She is back on a continuous pain pump with demand doses when she needs them, but nothing really seems to touch the pain. The meds just make her extremely groggy. She's about on the 6th day of the new medicine since she's not responding a whole lot to the increase in steroids. At this point, the doctors don't have much more to offer other than just "wait and see". That's it. We wait. We see if she starts to really respond to something. This is the 3rd time she has had a bad flare-up and we took steps back in her treatment. The bad thing about this time is that she is on more steroids again after she had been weaned quite a bit and on a lot of pain meds, which had also been weaned. We were so close to really having a way to get rid of the BK virus. Her stomach is severely inflamed the doctors said, after her last scope. They couldn't even biopsy it because it was so fragile and they didn't want to cause more damage. So, day-in and day-out, we wait. I wake up each morning hoping for a breakthrough, for a miracle, for something to work. This is all very hard on a mama's heart, and a daddy's heart breaks just as easily, maybe more sometimes.
We continue to pray and ask God to continue His work of healing, that La Petite Belle's pain would be gone, that the virus would be gone, that she would respond to the meds ... honestly, just for a miracle in her body. Thanks to so many who are praying hard for us and standing in agreement with us for our baby girl's complete healing. We appreciate every single prayer.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg. All funds go to cover medical bills and expenses.