Friday, March 16, 2012
Today is St. Patricks day... A fun holiday that once again, like so many others in the last 2 years, gets forgotten about until the day of. When mommy forgets about holidays there are no color appropriate shirts to wear or sneaky leprechauns or elves to leave footprints for my girls. Dinner will not be special and there will be no creative crafts and pictures to document the days festivities.
I get so weary of not only being limited in what we can do for Piper but also for what cancer steals from the entire family...especially the siblings who are drug along this horrible rocky path. It stinks and that doesn't even touch how much. I miss a normal life and even so, I scarcely remember living a life without worry hanging over our heads. I just miss being a mom and I miss my girls...so much. Oh so much.
Piper continues to keep everyone here on their toes. Nothing is staying stable for long. Her bp fluctuates, her heart rate often drop requiring the medical staff to bag her and provide her oxygen that way. They are talking about pulmonary hypertension and her CMV levels in her bloodwork have jumped to 6000, leading them to think that that may be the cause of the infection within her lungs. Whatever the infection within her lungs is, it is spreading and making it more and more hard to breathe. I don't even know what to worry about the most because I am so overwhelmed with just how sick Piper is... Having her ventilated only means she looks so sick and that I am missing out on her hearing her sweet voice and granting her bossy little requests.
I was told yesterday that Pipers chimerism of her DNA was showing primarily my cells. In normal circumstances this would be a source of excitement...at this point even the bmt doctors can't rally up enthusiasm because of how much Piper will have to overcome to even attempt a transplant. We are the lowest we have ever been and this is obvious. Every visit with her team and the ICU doctors leaves me feeling more defeated and they have moved her from "stable" to " unstable".
Rarely since Pipers young diagnosis have I asked "why", knowing that I will
never know the answer this side of eternity. Instead of wondering why this much pain has been heaped upon us, I focused on just being. Being contented with sharing a bed with the whole family and any times spent together. Being contented with taking each day at a time and appreciating each little moment I was able to give to Piper and even more, each little moment that she gave me. Contentment was the only way to survive and now I have such a sick little girl that I ache to make well.
I'm sobbing "why" with every breathe I struggle to take. I have no reserve apart from clinging to God in a way only the desperate do. My soul cannot fathom choosing to turn on Him as He is the reason I have survived this far. Praying is constant...it's my every breath and it's soothing. I know full well that God is capable of healing Pipers weary and sick little body but I also recognize that there is suffering on this earth and His will can just as easily be done when it hurts as when it feels good. I ache to never know this.
"I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.”
― C.S. Lewis