Saturday, July 7, 2012

The boys had another full day of appointments yesterday but no real news to glean from them. Eli was in good spirits, and getting rambunctious yesterday. He has been a little more subdued today. Vic said his temperature was starting to jump around a bit, so I’m very nervous for that. Yesterday he had speech therapy again, pulmonary tests, ECHO/EKG, and school. His chemistries looked good, and he didn’t need any transfusions. His ANC continues to creep up, so if they can keep from going completely bonkers in quarantine for this week, and if Eli’s temp stays down avoiding a hospital trip, I am beyond ready to see them at the end of the week. Eli’s appetite has also been up, and I’m wondering if finally getting the shunt flow correct has helped with that. Tonight, I was sitting in the floor with Caleb intensely building miscellaneous lego structures, and I was lost in the moment and concentrating on my multi-colored half-house half-skyscraper-with-a-twist-of-police-car building when I turned toward the door to call for Eli to join us. Just subconsciously sensing something was missing, I guess, I don’t know, but it was only a split second thought. We are in our seventh month and every day is intense it seems like and really wears on you. If I have any more gray hairs left to earn, I will have them by the new year along with countless worry lines to match. Vic is hanging in pretty well as far as I can tell, although we do not talk to each other much. Any free minute he can he is trying to get in his work hours, so I try to leave him alone or at least not take up large chunks of his time. He is an introvert, so quarantine isn’t too bad for him and, since they are quarantine, he has been able to get in at least the minimum number of work hours that he always hopes to get. His employers have been so gracious and understanding, and we are blessed that Vic has a job that allows him to work remotely, is flexible in how many hours he gets, and when he gets his hours and that he is willing to work under such conditions. If you haven’t been keeping up with Lucy, she has had a setback or relapse and is back at St. Jude having cut short her rehab in Atlanta. She is scheduled for brain surgery in a week in an attempt to treat a type of cancer that has appeared. You can read her blog at A large knot tightens in my stomach when I read it. I need to know how her mom gets through a day. I mean, like, I need to know because I need to know. Every day I beat down dread and fear and hold it there in the pit of my gut with only the strength of denial. And, denial is weak. Denial hasn’t the stamina to fend off the brutal blows of reality as often as it rears. So, how do I battle this, what weapons do I use. I understand the peace that comes through faith in God’s will for Eli’s complete healing; but I’m referring to the mundane moments that build a day. I don’t think I can adequately express the level of consumption such a drawn out tragedy as this has on one’s mind. With every Hot Wheels toy that I put away, every t-shirt that I fold, and every peanut butter and jelly that I prepare, I have to tell myself to forget for a moment in order to finish the task at hand. Will there be a metamorphic moment along the journey that I can hope to stumble upon which will better equip me to conquer the demi-demons of a day and prepare me for another day that looms. As the days pile up behind us, stamina is an issue and the weight of the sky is pressing. It doesn’t help that every time I fire up the computer I see news of another child victimized by the Evil One. Please, add Makenzey to your prayer list. She is a little girl from Athens who recently was admitted to St. Jude to fight Lymphoma.  It’s wearisome to read of it all. But, so as not to wrap up on my brain’s negative notes, another little local survivor, with whom we attend school and girl scouts, is giving back by collecting Beanie Babies to donate to Children’s Harbor, an organization that serves families and children with serious illnesses. Sydney will be collecting for two more weeks and she is half way to her goal of 1000. These can be new or used but must be Ty Beanies. If you would like to participate and help this little one experience the flip-side of charity, I’ve got a couple of choices for you whether you are local or anywhere in the country. If you are in the Athens area, please visit The Grasshopper located downtown off the square at 113 West Washington Street. This local business has been very generous to us in light of Eli’s event, and has offered to be a collection point for Sydney’s efforts. You may bring your items in to drop off, or the store sells them. If you are in the Huntsville area, MJ's Thrift & Antiques 1017 old Monrovia Road will sell Beanie Babies at a discounted price for the drive starting on Monday and he will hold what you purchase for Sydney to pick up. If you live out of town, and want to join the effort, you may call The Grasshopper and purchase with a credit card over the phone and she will include your purchase in the collection. The number is 256.232.7277. The picture I’m including tonight is of Eli with one of his beloved trucks. This picture was taken a good while ago, but I don’t think that I’ve used it.

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