Flashback 10 hours earlier in the day. . . I was just getting home from the hospital with Sergio who had just had day surgery to replace his G/J tube and a new central line. That was a fiasco, as usual, and I was working out how to manage a new PICC line instead of a permanent central line, as well as 2 lumens instead of his single. How one hospital can mess up things for the same child over and over is beyond me. But, we were home. Sergio has been running a fever for over 24 hours. Saw the doctor after his surgery and had labs drawn. He has an ear infection. . . something normal, yeah Sergio! He was very hot just an hour after getting home.
Flashback 6 hours earlier. . . Marriela is exceptionally happy and energetic, despite the fact she has received her night meds an hour earlier, with no sign of slowing down. Rest of kids are in bed, Marriela is bouncing happily on the couch watching a show we've never seen before (she found it on Netflix).
Flashback 4 hours ealirer. . . .Marriela is still very much awake, but now, not happy at all. Very agitated, can't decide between a movie or her music, can't make her blankets work the way she wants, can't make her brain stop hurting. Sergio's temp is now 103.4. Praying meds will help.
Flashback 3 hours ealier . . . Marriela and I are laying down together in her bed trying hard to get her to settle down. She is having a very hard night. 10:30pm, 4 1/2 hours after she received enough meds to get 4 adults to sleep for 24 or more hours, she is sleeping. She remains asleep so I return to bed. Sergio's temp is moving down. Prayers worked.
Flashback 2 hours earlier. . . My back and elbows are hurting a lot. No choice but to take Motrin and a Unisom.
12:54, all is quiet on the Curkgang front.
It's overwhelming sometimes to realize that there are 6 "little" people in the house that rely so heavily upon you. 6 people that, for various reasons like age, illness, developmental challenges, mental health, will be dependent upon you for the rest of YOUR life. What will happen to them when I'm not there. Who will love these kids as much as Peter and I? Who will work for 4 1/2 hours to help Marriela fall asleep, and help her work out her emotions several times a day and love her for who she is? Who will let Joshua go to the bathroom 20+ times a day and answer his 1,000+ questions a day and hold him as he seizes and will be sure his needs are met as he grows up and wants to one day move out? Who will be sure Annette's staff is always in place and the 3 pounds of paperwork a week are done, and make sure she is happy and healthy and getting out of life all that she deserves? Who will be there to care for and love Sergio for whoever he is, and continue to demand more out of him than people think he can do, and not give up on him just because. . .it's hard? Who will be there to help Tray manage his post-transplant care and handle all the potential issues that will eventually come down the pike, including, but not limited to, the fact that the average transplanted heart only lasts about 10 years? Who will be there to encourage him to live life to the fullest, including, finding a career he loves, a wife, and maybe even kids! And finally, who will be there to help Cody make sense of it all. One day he will look around and it will hit him, that he isn't in a family like any other he has known. How can we foster a continued relationship with his siblings if we're not here? Who will work/fight with the doctors, the schools, the therapists, and every person or agency that works with our kids, to be sure My KID'S needs are cared for, not those of the service providers. It scares Peter and I to think about it, so it's easier to not. But recently, we've been hit with several deaths of people around our age. When did people our age start dying? I would love to do a will, but who would we leave the kids to? No one family member could handle all of the children, yet, I can't imagine separating them at all.
I did a post on a Rabbit that's For Sale. . . For the Price of Love. Many people have read the post, but no takers yet on my poor sweet rabbit. Here she is, in my living room still. How am I to find competent, loving, caring and dedicated people to care for my amazing children, if I can't even find someone to take a sweet, trouble free rabbit.
I hate waking at 12:54am. To many hard thoughts come into my head and I have no answers to provide.
6:15 am, Marriela is awake and yelling about something. I tell her she has to come to bed with me for a bit. She does so, but not happily. Within moments she is asleep. As I rest between Cody and Marriela and listen to them breath, I know that I have the best job in the world.
Please pray that Peter and I live for a very, very, very long time.