Prayers mixed with medicine

Between so many prayers sent her way and a nursing staff who made some tweaks, today went SO MUCH better you all. I honestly don’t know what is harder, watching her in pain or trying to hide my own pain. Today, we practiced breathing techniques to try to help. She collapsed at the end from exhaustion but was able to remain conscious enough to squeeze my hand when I asked her too and for me, that made all the difference. The pain still came but it was later on and seemed to be somewhat shorter in duration. However, her post infusion recovery was light years better then Monday. She actually walked, played some, and could eat. Team said she’s doing so well and although there is no guarantee she will continue to tolerate this at their standards, each day that she does is a huge victory because Plan B treatment will make her road much longer. Thank you for keeping the loving prayers coming our way you all.

The nearest thing I can associate this with is being in the presence of someone in the throws of child birth. Except instead of it being a woman who could mentally prepare for the pain of child birth, it’s my 5 year old little girl who has no idea what is happening to her. But the raw screaming from pain, writhing and trying to move to get into any comfortable position, asking me to rub this and that and put pressure here and there to alleviate any discomfort, along with us helping her to breath...it so short lived and over in under 30 minutes. Like the trauma of child birth except it’s not bringing forth a new life but recovering her own. Taking it back from this damn cancer.

And I tear up even thinking of this because the chance that Charlotte will ever be able to actually give birth to a baby is very small due to the likely late term effects she could face. Endocrine disorders and infertility are overwhelmingly common issue for pediatric cancer survivors. So instead of holding my baby’s hand through that kind of miracle, I am holding it through another. In both cases, I am witnessing the gift of life. But I’m witnessing the gift of her life, hopefully being given back to her after all of this pain. 

Oh make no mistake. I started feeling so much anger building inside of me on Monday and I wanted to scream ENOUGH!!!! along with some explicits at the top of my lungs at the world. I wanted to punch a hole somewhere in this world, to break our reality, and escape to somewhere that leaves all of this back in some nightmare of a universe. I wanted God to feel my anger, but strangely, as quickly as it started to surface, it also started to quell. Because faith is growing even now and it’s taking angers place. And instead of shutting Him out, I sent Him a very specific invitation to please come be with us today for her next infusion. I asked Him to be present in the room and to help us feel His presence. I have never talked to God this way my entire life before Charlotte diagnosis. I like to think he heard all of your prayers as well as eagerly accepting of my invitation today because she had such a better experience during today’s infusion! The pain still came and it was bad, but she tolerated everything in what I would describe as a safer and better way. The pain came later and she got through it. Between some tweaking done by the nursing staff and what I like to believe is God helping to carry her a little, she really rocked it today. And mommy and daddy felt some peace.

Sometimes I question. And lately I have made my feeling about all of this very clear to Gods ears. I often feel like what is being asked of Charlotte, and of Brian and I goes against the very nature of everything I think I understand about Gods love and mercy. Like we are being stretched to some limit and for what purpose? Are we being stretched to make room for something?

Strangely, last 2 weeks when the traffic noise in the city would drown out our voices as we walked, Charlotte and I came up with a little hand squeezing code of our own to say I love you, or hello, etc. We would do it and look at each other and smile. Little did I know that I would use that hand squeezing communication with her during this therapy because she wouldn’t be able to talk but she could still signal that she could hear my voice. The nurse had me do this Monday during her unresponsiveness that prompted Narcan, and we did it again today as she tried to rest but we wanted to be sure she could be roused after infusion was over. 3 squeezing equal in length = I Love You❤️