Bentley left today. I had a great week with him here! I feel a huge weight lifted knowing that he doesnt have to be passed around anymore. He is SUCH a trooper. Everyone who took care of him, loved him like their own and spoiled him. I am deeply grateful for that! Now hes getting to the point where he really needs stability and consistency. Im glad that time has come. It is one less burden I have to carry. For me, this week has been about tying up loose ends. I have to do A LOT of coordinating to get both teams of doctors to release the kids at the same time. Many details fall through the cracks. Its my job to foresee each detail and coordinate it into our plan so that it doesnt interfere with our departure date. Neither doctor would make any medical decisions based on the other kid. But, since they are both doing well enough to leave, I am making many phone calls to coordinate their appointments, medications and procedures to finish around the same time. I am also getting their doctor in Florida coordinated with their St. Jude doctors and prepared to see them there. Since May, I have tried my best to keep my mind focused on my kids here. I found that if I get involved in details at home, I become discouraged and hopeless knowing that I dont have an end date in sight. Now that we really are leaving (I say that cautiously knowing that anything can change last minute). I find myself feeling a little lost. Just the past couple days I actually felt sad leaving St. Jude. This place has been a huge part of our lives this entire year and literally been our home for 6 months!! They treat us so well here. We know we are loved and cared for. We have gotten to know SO many staff members and other families. The only form of social life I have had this year, are the meaningful interactions with other parents who are experiencing the same things we are. It creates a bond that no one else can understand. Its almost like a built in support group! When we get home no one will know what we went through or be able to relate to us. My kids will stick out like sore thumbs with bald heads, masks and a fear of germs. PLEASE Dont get me wrong, I am very eager to bring my kids home, where they belong, as one family under the same roof. It will just be an adjustment. Though we will be home, my focus will still on my kids recovery. We will have MANY trips back to St. Jude for check ups and procedures. Lots of doctors appointments at home as well. And as much as I dont like to think about it, this year is the beginning of many unknowns for Bentley as well :(. Thats whats going on with us! Please pray that the kids appointments go well this week and that we get to leave on Thursday as planned!
Posted on: Sun, 12 Oct 2014 02:58:33 +0000