I tried to think about where I could have gone wrong. I don’t know. The interactions with this team were unfeeling, but not unlike a lot of interactions I’ve had with surgeons throughout my career. Someone wise told me that you want a surgeon who has just a little bit of a God complex. You want the person who is about to operate on you, or your child, to seriously believe that they are only one tiny step removed from the Almighty himself. I get that. But, to put it bluntly, that complex wasn’t lacking with the surgeon I just met. It was made very clear. This time though, I was the parent. Suffice it to say, I guess I learned a lot about compassionate care from the lack of it in my interactions with this man.
I also learned that, somehow, I’ve given off the vibe that we brought Dolly here, to our family, to die. I apparently have made people believe that somehow, because we knew about her condition prior to adopting her, that we aren’t going to fight just as hard as if we had “born” (I’m throwing some love to my Ghanaian kids who use that word all the time) this child.
I’m not sure what I ever said to give anyone that impression.
It sure as heck isn’t true.
Accepting that we might fight the good fight and that she may not make it is worlds different than not even trying. I get SO mad when people shrug their shoulders and tell me “well, you knew this was a possibility”.
No. No I didn’t.
There is no way I could have prepared myself for loving a little person this much while staring down the barrel of losing them. Absolutely. No. Way. I had no clue. I knew it might hurt. I said it a thousand times, but there is no way to explain the soul ripping fear I have of what life will be like without her. Someone once said that there is no pain like that of losing a child. I can imagine that now, and it’s frustrating for anyone to think that I don’t feel it just as deeply because this child didn’t start out as mine.
Yet again, the fact that my child is adopted makes some very important people feel she is worth less then a biological child who just might have come into their office with parents that look just like her and have been with her since the moment she took her first breath. My daughter didn’t choose this disease. She didn’t choose to be abandoned. She didn’t even choose to be adopted. I’m the one who made the choice, and I choose to love her more because she has fought so damn hard during her two short years of life. Somehow, that message isn’t coming through clearly enough in my interactions with medical personnel.
So far, it is viewed as less important that they find a good surgical plan for her. For now, it is apparently less important that they try their hardest. It is less important that they see my baby for the fighter she truly is. It is less important that they show me some compassion when they deliver bad news.
Well, that makes it all the more important to me that I find the perfect person to operate on her.
I haven’t found that person yet. I’ll keep looking until I do.
who doesn’t care what she said to make it sound that way. It’s not true.