I have been quite involved the past two days with my mom and Sierra and Kadin (Chloe's brother and sisiter) so have not had a lot of energy left at the end of the day for thinking or writing. So much has been happening in our family, the intricacies and fragility of the human being involved in something so huge and out of one's control...getting a grasp on these concepts is mind boggling and leaves me feeling inept and unwise. I hope to be strong for my daughter, my son-in-law my other grandchildren. I hope to be able to give positive energy to my husband, son, mother, friends...all of the things that lend themselves to ALL of us being there heart and soul for little Chloe. There have been moments when I just don't know what to say to whom, what to think in my own overloaded brain, yet I know that I can draw on the strength of people who care and have the words and are there to just remind me of God's promises. I go back a lot to something I have heard for years and years, that God does not give us more than we can handle. It is not being negative that makes me question this, it is the day to day that we are living, the tragic moments in my family's past that do not lend us to the belief that we are deserving of the opportunity to take this on "because we have been preparing for it". We have had many, many troubles, we have believed, kept the faith, carried on...yes, survived it all. To be given Chloe does have its rewards, to imagine that we were all 'chosen' because of all the preparation time we were given and survived, but the day to day fragility of emotions, balancing, sharing the load, giving family members space, trying to give advice without sounding controlling or just like I know anything at all...well, it is highly stressful and tiring. The intricate details take away from giving Chloe the very best, but we cannot do that until we ourselves are at our best! I worry what is happening to my family as we work through this and ask for prayers not only for Chloe's health and promising future but also for my family's stand to become strong and united These are highly charged issues and need many, may prayers. Until some of this is addressed, I feel Chloe is missing something from us. She needs each and every one of us there for her whole, not shattered, stressed or anxious.
Chloe is absolutely the sweetest little baby, the strongest, the most prepared little warrior and fighter any one who meets her has ever seen.. We are all so very much in love with her and as we face this possibly life saving surgery many scenarios play out, at least in my head. We all want her well, breathing without a ventilator and on the way to going to her home for the first time. We look to the future surgeries and travails, the successes that will offer a normal life to her. The head fills up really fast, all the while believing that God can do miraculous things. We pray that He chooses to do them with Chloe and this family. I feel really bad inside when I go to check on Jessie Boone and see the updates that her mom writes. Positive words most every time, ALWAYS able to praise, praise, praise. I second guess my self and what sharing my feelings as they rise up really means. When I write of frustrations, fears, the necessity for help...is that wrong? Is that sending negative vibes that are better not shared or is that the truth...my truth...not my kids, grandkids, friends...mine. I wore a mask for many years, that didn't do a lot to promote great mental health for me. It took a long time for me to learn to share feelings, and that is truly what you get here. I'd like your input on whether you think is the wrong way to report. I don't want to fake it when I am confused, disappointed, hurt, lost, overwhelmed, but if I am hurting Chloe or family by doing so, I will do what is necessary. I think I needed to do this tonight because of some difficult things that have happened this week, and I want to purge myself of these feelings as we go into the next week in order to be there in EVERY way next week. Chloe's heart surgery is scheduled for next Tuesday, first thing in the morning. She is feeling better each day from the last infections and we are so enjoying this baby who feels pretty good. To know that in just a few days this baby will once again be operated on, open heart surgery at that, disturbs me. It has been so satisfying to see her act happy, to play with her a bit. The surgery will help her to grow, to thrive, we all want that, it is just hard to let go for a minute and know that next week we are back to tubes and and wires and tests and who knows what else. This is all she has known! As soon as she feels ok, something else comes along! babies shouldn't have to do this!
Please help me to clear my head friends! It is obviously VERY FULL! I love this baby, her siblings and mommy and daddy SO VERY MUCH! I DO believe that God performs miracles. I also believe that we ned one! Thanks for continued prayer and support. Love to all, Nancy