"These are the times that try men's souls." These words were the opening lines of philosopher Thomas Paine's series of pamphlets entitled The American Crisis. The pamphlets were intended to help boost the morale of the colonists who were embroiled in a war with the English. His writings were written in language that the common man could easily understand and relate to, and also appealed to the people of England in consideration of their battle with the Americans.
This may seem like an unusual introduction for the day, but it suits my feelings on a couple of levels and my analogy for what is happening in our lives at this time. I feel that I have been dropped into the middle of an unpredictable battle, where lives are being commandeered by forces greater than their collective whole. That itself leads me down many, many paths of thought in a single day. Differing pathways are tread upon when my 'morale is boosted' by encouraging news from doctors or nurses or just the support given by friends, family and literally,complete strangers. This battlefront has bloodied my positive outlook, the very outlook that has given me an attitude over time that allows me to see, be and act in gratitude each day that I live it. It took me a long time to gain that perspective, lots of hard knocks which effected not only me but every single person that I have known and loved. We experience life and take what it has to offer, hopefully making decisions along the way which benefit those people around us. Unfortunately, in my experience, the domino effect of choices being made by myself, coupled with others, often plowed down whatever it encountered in its path. The funny thing is, I thought I'd made it past that part of my life. My family seems to have had more that its share of crisis and life changing tragedy. So, as much as I hate war, I've had my fair share of it, and Thomas Paine's words ring true in my soul. That he offered solace and inspiration means even more, because just as America found their way to the end of the revolution, I believe so will we. We have all fought and won the battle before! Please just keep the morale building to a maximum!
The most difficult parts of this experience are watching little Chloe in her battle to overcome the things we so easily take for granted every day...eating and breathing, and also watching those who love her grasp at straws to understand why such a sweet little thing has such a difficult road ahead of her. Chloe was moved into her new private room the night before last. It offers her more peace and quiet, a much less stimulating environment so that she has more time to rest and put her energy toward growth and healing. It is really a much more friendly sort of room for the family. There is a tv with a dvd player, so even though they need to be quiet, Sierra and Kadin can watch a movie or cartoon and be entertained a bit while we hang out with Chloe. This will allow for much less division in the family time, although I already see some frustration on Sierra's part, her acknowledgment that this has gone on long enough, questioning why her life just turned upside down and no one sounded the 'rough weather ahead' warning. I cannot imagine being three or five and having this life changer thrown into my lap. Granted, children don't always have the expectations of things that we do as adults, but realizing that life as you knew it changed from one morning to the next has to be a shocker! My heart is aching. Anyway, Chloe has been accepting most of her feeding through her stomach, a backup every now and then into the nostrils, but mostly doing much better. This is such a positive development. She lost some weight for a few days but seems to be headed upward once again. On the breathing front, some of the her respirations will be more consistently on the lower end where they need to be, but then will bump back up and stay faster. This has remained a concern and has not allowed her to be taken off the CPAP machine that aids the lungs with a bit of pressure. We had hoped as they tested out removal of it for a few hours at a time that it would lead to her leaving it behind. Keep the prayers coming. Yesterday I watched as jennie and the nurse bathed her. Such an ordeal, as all the wires need to be unhooked and tubes placed just right just to put her in the baby bath. It seems a bit nerve wracking also, because no water can ever be allowed to get into the trach tube. But...Chloe LOVES bath time. It seems to be very relaxing for her and she likes the elevated position of her back. We thought that might translate into her liking her bouncy chair, but she seems to be a bit irritated when placed in it. Maybe next time!
A developmental specialist was in yesterday, watching her for a while. She will write her report and go over recommendations early next week. Her initial report centered mostly on allowing Chloe to rest as much as possible and not to offer too much stimulation. The hearing test has not been completed yet, but the Deaf and Hard of Hearing specialist also came by yesterday and will be working with the family on baby sign language and basic education most likely very soon. There is so much to take in. So much for me to NOT worry about, because I know that it is in God's hands. I used to give Him my worries and then grab them back. Not so much anymore, and I know the situation will be provided for, although even with this belief, my heart does not stop hurting. Maybe that should be my next prayer, acceptance without heartbreak. My soul is surely being tried!
Thank you all SO much for all your prayers and encouragement. Sorry it took so long for this update. Lovingly, Nancy