I just got off the phone with Sherri, who is Dr. Frim’s nurse (the neurosurgeon in Chicago). It was definitely nice to hear that they had tried to come to some resolution with the “Resident” who was a large contributing factor in our poor experience in Chicago. I am a firm believer that MOST “issues” in life are NOT about the mistake itself but in how it is handled afterward. It would have been NICE to have actually spoken to Dr. Frim himself but I definitely give Sherri kudos for making the effort. Truthfully, I really do believe that Sherri does feel badly about our wait. Honestly, I believe that there may never have been another patient who has ever waited that long before… we managed to be the first and at the MOST wrong of times. Our life has a way of managing to work things out. I had not felt any peace about Dr. Frim or Chicago until now… and here is why.

There is NOTHING in my life that is not divinely orchestrated. There were plans laid for my life and for Kyleigh’s life long before I ever took my first breath. “I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)”

Where am I going with this? I had all but written off Frim and Chicago. I was making a round of phone calls today making appointments for Ky with Joe for follow up, in Cincy for Urology, with Dr. Owen – neurosurgery here in Lexington, and before I could hang up the phone with Dr. Owen’s office… Sherri is beeping in on the other line. It hit me… “I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)” And as much as I want to HATE Chicago… and HATE that I will have to pay out the REAR to go there… and as much as we were put off by everything that has happened… maybe Chicago is the right place for us. I believe in signs and miracles. Do I think it was ANY coincidence that a phone call that I was pretty sure would NEVER come came TODAY… of all days, while I was on the phone with another neurosurgeon’s office… NO. God never promised us that it would be EASY. Nothing in the past two years has been easy but it every moment of it has been insanely rewarding.

I cannot and I will NOT believe that was luck… So now I am FORCED to once again listen to that still small voice. That “pit of my stomach” feeling that has been right so many times before. And just like I told Sherri… this is something that we will have to do much thinking on. The fact of the matter is that we would face taking on a potentially $15-30K debt to have her surgery done in Chicago. When I think long term I know that there is someone else who could do this surgery. I know that there are others out there… but who is my daughter MEANT to be in the OR with? It would never be worth even $100K to have my daughter be in a wheelchair for the rest of her life.

I have faced much opposition about the colostomy closure surgery. I know what it is like to be in complete turmoil in trying to make a decision about my child’s health. I know what it is like to make that decision only to hear naysayers tell me all the reason why I should reconsider. There are things that I KNOW in life. I know that we were meant to be here in Lexington this Christmas. I know that Joe was meant to be her surgeon. I know that UK was meant to be our hospital this time. I shed not ONE tear and never felt more confident in any decision I have ever made. It was an amazing experience that honestly I never thought that we could have here in Kentucky. Now… I will be on my journey to find that same peace with a neurosurgeon.

Someone pointed out to me this week that I have to stop looking for another Dr. Joe. They told me something that struck me and I came to understand that there is not another Joe in the world. Every single doctor is unique in their own abilities and personalities just like any other person in the world. I realized this week… if I compare everyone to Joe or Megan, to Dr. Eghtesady, to Dr. Levitt, or to Dr. Alam… then any new doctor in our life is doomed to fail in our eyes. I cannot COMPARE these people. Its like comparing apples to oranges. Maybe I should redefine what I mean when I say that we want to find another “Dr. Joe”. I mean I am looking for teh RIGHT person for the job. The person who takes into account my entire child and honestly does value my opinion as her parent. I am looking for someone who realizes what it means to “be Kyleigh”. The one thing I can do is rest easy knowing that, in that respect, there does exist “Dr. Joes” in the world and being determined to find that person for a neurosurgeon is being determined to find “the right one”. Nothing more… nothing less.

Maybe sometime I will tell you why Dr. Joe has become such a term of endearment in our little world and amongst many many parents in the VACTERL and IA community. (BTW… I will go ahead and apologize in advance to Joe for that post that has not even been made yet… I know that one will have him taking out the garbage for MANY nights….).

Popularity: 1% [?]