I remember her smile on the morning of October 27th. I took so many pictures of it there in our room awaiting yet another surgery for our girl. I didn't know when I would see that smile again. We endured a grueling 4 hours in recovery with her b/c she just couldn't seem to pull it all together. Her heart rate, temperature, breathing and oxygen saturation were all over the place. It is a vivid memory in my mind of how truly fragile she is.
Another vivid memory from that day is the sight of her in that brace. Cold metal with padding in the places where it touched her skin, I was scared to death that if I touch her I might hurt her. My first thought was how am I going to hold her. Am I really not supposed to hold her for 4 weeks? The doctors have lost all connection with their patients, patient's families and living...being at home and living day to day. Her doctors at Children's are wonderful at what they do, but they have lost their compassion. They have a disconnect between their instructions and our family.
We are coming up on week 4 soon, actually Thanksgiving Day will be 4 weeks. I held my girl for the first time this weekend. I mean truly held her, not just picking her up to transfer her from the bed to the couch and back again. She has had quite a week and has been feeling rotten for days due to a fierce kidney infection. It has taken a toll...on her and us, certainly more so on her than us though. We can take it, I just wish she didn't have to.
It is impossible for you to understand unless you have walked a similar road, but even though it is a relief to find out what is making her feel so bad, you still know in the back of your mind that there is constantly a mountain ahead of you to climb. I was truly relieved to get the diagnosis of a kidney infection last week. I know it sounds crazy but at least then I knew we could do something about it. We could make her feel better eventually, but then what...then we still have this surgery that she is recovering from. Then we have all this underlying constant care that we can never escape. There is no medicine, there is no therapy, there is no procedure, there is no surgery that can make it all go away.
I have grown weary of these four walls. I know the baby sister would be too if she could get to feeling better, but I'm sure she just plain doesn't care right now. These last 3 weeks have set us back big time, she is beyond weak. Does she feel what I feel as I kneel or sit beside her weeping? I'm afraid she does sometimes.
I held her for the first time in over 3 weeks. She's feverish, I can see it in her flushed red cheeks and I can feeling the unnatural warmth of her body, but I held her. I don't know if it's that she needs me or I need her, either way I pray it brings some relief to both of us.
Colossians 1:16-17 "For by Him all things were created, both in the heavens and on earth, visible and invisible, whether thrones or dominions or rulers or authorities-all things have been created through Him and for Him. He is before all things, and in Him all things hold together."