It’s been a long journey. My beautiful daughter, Marlee, was born almost 27 years ago with some significant health concerns.  On this journey, she’s taught me so much. She’s allowed me to see a bigger picture. She’s taught me love and patience. She’s taught me about unconditional love and it goes both ways. She’s taught me about perseverance and finding joy and living expansively. 

When Marlee was young, I was operating out of fear when making health care decisions for her.  I was so afraid that the seizures she was experiencing were going to make her life miserable permanently.  I did everything I could to try and find ways to help her and I was doing it in a frantic way. Over time, I learned the virtue of patience and looking for patterns. I’ve always done my homework and done extensive research, but my decisions were always motivated by fear.

Recently, Marlee’s neurologist, who is one of the brightest and most respected neurologists in the United States, suggested that we get a second opinion from a well-known neurologist in New York. The New York neurologist has been involved in her care in the past but wouldn’t speak to me on the phone or via email because it had been too long.  He would, however, admit her in the hospital for testing after receiving the referral from Marlee’s primary neurologist without having a conversation with me. So, I decided to drive to New York to meet with him about a possible hospital stay and come up with a plan.  

We went back a few weeks later and Marlee was admitted as an inpatient for monitoring and testing. My intention was to see whether there was some sort of implanted device that could help her.  We made it through the challenging hospital stay and then began our wait for their recommendation. I tried not to think about it. I wasn’t sure if I would agree to an implanted device, but I wanted the option. 

It took about a month and a half for the team of doctors to meet to discuss Marlee’s case and the recommendation was shared with me on a telephone call a few days later.  The neurologist told me that the team of doctors who specialize in epilepsy at his center recommended a major surgery with significant risks. This idea terrified me. They did not recommend the implanted device that I was interested in exploring.  They halfheartedly recommended a different implanted device but weren’t convinced it would be helpful.

I could barely think, much less talk, as I tried to formulate and ask the questions I needed answers to.  My final question was, “Doctor, if Marlee was your daughter who you loved with all your heart, what would you do?”  He didn’t hesitate. He told me that he would make the decision for his daughter to have the surgery. He also told me that if he was in that situation himself, he would make the decision to have the surgery for himself.  He then told me that if it were me, I would make the decision to have the surgery, and that I was doing Marlee a disservice by not making the decision for her to have the surgery.

I couldn’t breathe as the tears ran down my cheeks.  I took a deep breath and attempted to ask another question.  He stopped me and told me he had other patients waiting and then informed me that the allotted time for our telephone call was 15 minutes.  15 minutes to discuss the recommendation from a week long hospital stay. 15 minutes to discuss a radical surgical procedure, what was entailed in that procedure, and the risks and benefits to my daughter.  And there was no time to discuss the difficulty Marlee was having with the medication taper he had recommended so that she could be started on a different medication.  

I told him that I would figure out what to do with her medication myself.  He took a moment so I could quickly ask the question. Unfortunately, without a hint of listening or trying to understand, he exasperatedly said, then just put her back on the medication.  That wasn’t my question but it didn’t matter because our time was up.  

As I hung up the phone, my throat began to swell, my eyes filled up with tears and I started to sob.  I have never felt so alone in all of this as I did in that moment. I’ve been going at this alone for Marlee’s entire life so it was surprising how alone I felt.  I put my head in my hands and allowed the feelings to wash over me.  

It took me some time to regroup and to figure out what to do. I knew I had to gather more resources, more information, more knowledge, other opinions, and the experience of others before I could make a firm decision one way or the other.  I put together a list of people to contact and research to do. I methodically sent out emails and made phone calls to coordinate getting a second opinion. 

After all that was in the works, I felt a little better.  I did some research on my own to try to get a better understanding of the recommendations.  I did my best to relax and distract myself because there was nothing more I could do. Fortunately, Marlee had an event to go to that night and I had a few things I needed to get for her before we went.  I ran out and got her a new belt and a little sweater to go with her dress. When I got home, there was just enough time to help her get dressed, fix her hair and head over to the dance.  

The dance was part of the Tim Tebow Foundation’s Shine On event.  The foundation sponsors these events on the same day all over the world in churches that, literally, roll out the red carpet for the participants.  There’s dinner, dancing, karaoke, a ride on a party bus, a program with skits and song, desserts and fireworks. Woodside Church, where we have gone the last couple of years, goes all out.  It made my heart feel good to see Marlee having such a great time. 

The next day, I was really stressed out.  The recommendations weighed heavily on my mind.  I had trouble getting any work done and I just wanted to curl up in bed with the covers over my head and make it all go away.  I closed my eyes for a while and it came to me that we were missing a step. In these types of surgeries, there’s typically a phase one with the surgery being phase two.  Phase one provides better data and information and generally better outcomes. I did a little research and confirmed that indeed we were missing a step.

I also got the message loud and clear that I needed to do my due diligence by gathering all the information and knowledge I had mapped out, and with that knowledge, ask God what to do. I’m in the process of doing that now.

When I later reflected on the messages, there was some profound wisdom in them.  First, I realized that I could not have heard or received these messages without getting still and quiet and being in a place to receive.  Curling up in a safe place under the covers allowed for that. Rather than trying to solve the problem, I was just looking for some comfort.  

Second, I realized that being guided to do my due diligence and then ask God is totally in alignment with my mission.  We often use one of two different ways of trying to solve a problem. One way is through knowledge, analyzing the information, talking about it, and trying to figure it out. The other way is a more spiritual route where we ask for God‘s guidance or God‘s healing. What I’ve realized is that both of these ways have value and are important as we maneuver our way through life.  However, I’ve known for a long time that it’s really important to do both and that’s where I find the most peace, have the most meaningful experiences, and have the best outcome.  

I am quite clear that I need to get informed and knowledgeable and ask questions.  For me, that means not leaving any stone unturned. And with the foundation that I’ve built from a logical, rational, and intellectual perspective, I need to ask God what to do.  In my heart of hearts, I know beyond a shadow of a doubt, that’s where the magic happens. And I know in my heart of hearts that this is how I will make the decision that’s right for Marlee.

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