What Did I Say To Make You Feel That Way?

We meet with another surgical team on tomorrow.  I’m hoping this meeting goes quite a bit better then the meeting with the last surgical team.  I think communication has broken down with them to the point that we both understand that we won’t be having surgery here at the local children’s hospital.

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.  

4 thoughts on “What Did I Say To Make You Feel That Way?

  1. I am so sorry, but you will know when you get to the right one. When we were facing Fei’s unexpected brain/ spinal surgery I thought yeah I’ll check out the surgeon here BUT I knew I would take her to delaware for the surgeon we love and trust. Well, God threw me for a curve ball and in walked a crazy little neurosurgeon who had a little bit of God complex mixed with a confidence and I knew we would be ok. AS I tell others, I don’t need them to be my friend I need them to be the very best in their field. What about trying the surgeon’s that have done surgery on other adopted children?

  2. I think that as a society, we value life in differing degrees.We mourn as a nation for twenty kids at Sandy Hook (and rightly so) but fewer express outrage over the 500 homicides (and higher) in the city of Chicago in 2012, many of whom were children.We value a life after birth differently than we do before birth.And, evidently, some value biological children differently from adopted children.It sucks.As if knowing that she had this problem somehow makes her life less than if it had been a surprise presenting itself after she came. I completely agree with you – somewhere, there is a surgeon who will fight for her and with her, and not just shrug and say “oh well, you knew this might not work out.”You know Casa Dot is always open to however many FPFamily Members need a place not far from Chicago or Milwaukee to crash.*HUG*

  3. Thank you both. We might need to crash @CasaDot. I have NO clue where this journey will take us. No clue.Yvette, Boston has worked miracles on adopted children and children who just had the bad luck not to be able to have their condition corrected for a long time. I’m hoping they’ll get back to me. I have one team telling me ‘hurry, hurry’ and another telling me to gather more info, one team telling me surgery is too risky and another recommending a very risky procedure. I need a little clarity. I hope to get it from this new surgeon tomorrow. We’ll see. I want the peace that you found when that surgeon walked into the room. That would make my day, God complex or not.

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