Dr. Steele

On April 22, 2013, my 16-year-old son, TJ, underwent heart surgery to repair a newly-diagnosed heart defect. He woke up from that surgery with an abundance of medical problems. At that time doctors were unable to diagnose him, so my husband and I made the decision to transfer him to a higher level of care hospital. On May 10, 2013, TJ was flown to Mayo Clinic in Rochester, Minnesota and admitted to the PICU at St. Mary’s Hospital.

I had been told that Mayo was one of the world’s best hospitals. Upon arrival, I had hope that doctors would quickly figure out what was wrong with my son, fix him, and send him home so we could get back to our lives.  But that is not what happened.

One of the first doctors I met was Dr. Steele.  She is a pediatric intensivist at St. Mary’s Hospital. Initially I did not like her, and every time I saw her coming, I wanted to run. She said things like, “Your son is very sick, and his lungs have taken a beating.”  “We think he may have had a brainstem stroke.” “He may never get off a vent.” Her words felt cold and harsh. Most times after speaking with her, I felt like she had just punched me in the gut.  I wanted to throw up. “Doesn’t she care how much this is hurting me?” I thought. I wanted her to tell me that my son was going to be okay and that he was going to go to college, get married, and have children like I had planned.  But she didn’t tell me that. No matter how hard I tried to get her to tell me that everything was going to be okay, she just wouldn’t say it.

After a couple of months in the PICU with many ups and downs, TJ started to improve. During evening rounds, I walked into TJ’s room and found Dr. Steele throwing a ball back and forth with him. She was laughing, and I could tell she was delighted to see his progress. My heart started warming up to her just a little.

One evening I had questions for her that I didn’t want TJ to hear. She took me into another room and spent quite a bit of time explaining to me what had happened to him. By this time I had started accepting TJ’s brain injury, and I was beginning to handle bad news a little better. I could now talk more openly without getting defensive. I appreciated her spending so much time with me and teaching me about my son’s medical condition.

Over time I could tell that she was genuinely sad about what had happened to TJ.  When she learned he had been a drummer, in an effort to bring him some quality of life, she had her husband come in and play his guitar for him.  My heart warmed up to her a little bit more.

Finally, after two and a half months, TJ had improved enough to be discharged from PICU and transferred to the rehab floor.  The medical staff told me that in order for him to be discharged, I had to change his trach three times, clean the trach, and learn how to suction it.  I absolutely did not want to learn. I had never wanted to be a nurse in my life. I had watched TJ have three respiratory failures, and I was terrified of his trach.  I wanted them to fix him and get him back to the way he was. So, I half-heartedly tried to learn. When the nurses noticed my lackluster efforts, Dr. Steele showed up and had a talk with me: “You need to learn. You have it a lot easier than some of the other parents around here do. They’ve got babies with trachs and the trachs are tiny.” After that I decided I didn’t like her anymore.

Soon after eventually learning all of my tasks, TJ was finally discharged to rehab.  When we were leaving, Dr. Steele said, “TJ, I don’t want to see you again until you walk through that door.”  I made a mental note and was determined that when he was up and walking again, we would come back to the PICU and show her how much he had improved.

However, we did not stay in rehab long.  TJ became very ill, and we were sent back into the hospital. After two more months of bouncing around the hospital with many peaks and valleys, we finally made it to rehab and stayed in rehab.  TJ began to improve greatly. He was walking with a walker, so toward the end of our three-week stint in rehab, TJ and I, along with his physical therapist, trekked down the hall to the PICU.  When TJ walked through the door, we saw Dr. Steele standing on the opposite side of the room. Upon seeing him, her jaw dropped to the floor. She came straight to us and exclaimed, “I’m so happy for you!” There was much joy and excitement.  And I began to really like her again.

A couple of days before TJ was discharged from rehab to home, Dr. Steele was sitting at a desk outside of TJ’s room.  I was excited to see her sitting there, and I went out to talk to her.

“You used to make me so mad,” I said with a grin.

“Why?  What did I do?” she asked.

“You told me the truth and I didn’t like it! Many times I would ask you a question, and when I didn’t like your answer, I would walk away muttering, ‘She don’t know everything.’”

She laughed and jumped off her chair and hugged me.

And from that day forward, she became my most favorite doctor ever.

The Quick Head Turn

My son TJ was born a typical child. At the age of 16, he acquired a brain injury that left his body severely disabled but his cognition intact. He thus became a child with special needs. During the five years that TJ lived with his brain injury, one thing that became glaringly obvious to me was the lack of education in the community about how to treat people with special needs. Many, many times my heart was broken for TJ and for myself because of hurtful comments or actions that were made from the Christian community and the non-Christian community alike. After struggling with anger for a time, I began to realize it was really just a lack of education, and I felt a burning desire to do something about it.

First, let me start by explaining what “typical” means.  “Typical” refers to basically any person who doesn’t have special needs. Many people in the special needs community are offended by the word “normal,” and rightfully so; therefore, the word “typical” is used in its place.  For me the word “normal” does not bother me when referring to TJ in particular because who he was after his brain injury was not his normal. However, it is very understandable why the parent of a child with Down’s syndrome would be offended by the word “normal” because their child was born with Down’s syndrome which means God created the child that way and that IS the child’s normal.  Labeling a child as “normal” or “not normal” can be very hurtful, so to be safe, it is best to stay away from using those terms.

Now that our vocabulary lesson is done, I want to share a story of my mindset of special needs prior to TJ’s injury in 2013. A few months before his surgery, I was at a craft show with a friend. As I came through the door into the room, I saw a young girl, maybe 5 or 6 years old, with special needs in a wheelchair. After seeing her, I quickly looked the other way and pretended I hadn’t seen her. After meandering through the craft tables for awhile, I came back around to the entrance of the room and saw the little girl again. However, this time a woman was standing beside her.  The woman was caressing the little girl’s face and talking softly to her. As the little girl was leaning into the caress, a look of pure pleasure spread across her face from the love and attention this woman was showing her. I immediately felt ashamed. “Why didn’t you acknowledge her?” I thought.  “Why didn’t you at least just smile at her? Why did you just pretend she wasn’t there? I’m supposed to be a Christian,” I told myself.

Tom playing cards with TJ at respite care at
Valley Church

Fast forward four years. One Sunday morning we were attending church. Generally TJ went to his own room where Tom, a very kind man with a servant’s heart, taught him a lesson from the Bible. However, on this particular Sunday, Tom was gone, so TJ stayed in church with us.  Toward the beginning of the service at our church, there is a greet-your-neighbor time. While I was shaking hands with the people around me, I kept my eye on TJ. I noticed nobody came to shake his hand or greet him. I immediately felt very sad for him and ran to be by his side. I then saw a woman a few rows in front of us scanning the room for another person to greet. When her eyes landed on TJ, a look of uncomfortableness flashed across her face, and she quickly turned around. My heart sank. I was now on the receiving end of the quick head turn, and it didn’t feel good.

Even though the woman’s failure to acknowledge TJ hurt, I understood what she was feeling that morning because I had felt the same way years prior. I assume that like me before TJ’s injury, she probably had no experience with special needs and didn’t know what to do. She may have had thoughts like: “If I approach him, will he get scared and start screaming?”  “If I greet him and he can’t greet me back, will it make him uncomfortable? Will it make me uncomfortable?” “Maybe he really just wants to be left alone.”

What the person with special needs and their families want everyone else to know is that as much as it is possible, we just want to be treated like everyone else. If it’s the greet time, greet us and shake our hands. If the person with special needs can’t shake hands, give them a gentle touch on the shoulder and tell them you are happy they are there. If they are nonverbal and can’t respond, that’s okay. Tell them anyway, smile, and then move on like you would with everyone else. You never know how much a person with special needs is capable of understanding by looking at them. Some are far more capable of understanding than you think they are, and even if they aren’t capable of understanding your greeting, their families are and they notice when their child is being acknowledged and they do feel loved by it.

I am convinced that it was not a coincidence that the event at the craft show happened just a couple of months before my son became a person with special needs. I believe God had me experience both sides of the quick head turn so that I could help build a bridge between the general community and the special needs community.  It really is just a matter of education.

I’ll never forget what my friend Kim did for TJ the first day he was healthy enough to return to church. She was elated when she heard the news that TJ was there. She made a beeline straight to him, fell all over him, and told him how happy she was that he was there and how much she cared about him. After having experienced so much rejection, her kindness still brings tears to my eyes. Kim didn’t seem to notice that TJ was drooling all over himself, that there was a gurgling sound coming from his trach, or that he couldn’t focus his eyes on her when she talked to him. What Kim saw was a heartbroken person who had been through a terrible tragedy and needed to be loved. That day she made him feel like he was a little bit more of a person and a little bit less of an outcast.

Whenever I see someone at church or in the community with special needs, I remember what Kim did for TJ and how it made us feel. As best I can, I imitate her actions to other people with special needs so they will also feel a little bit more like a person and a little bit less like an outcast.

Job 6:14a “To him who is afflicted, kindness should be shown by his friend…”

You Can’t Teach an Old Dog New Tricks

Thank you for checking out my blog.  Let me tell you a little bit about how this blog came to be.  In April of 2013, my son TJ sustained a severe brain injury at the age of 16, and during the course of his illness, I inadvertently discovered something about myself: I like to write. Through the pages of a Caring Bridge journal that spanned almost five years, writing became an outlet for me, a kind of place where I could pour out my heart about the joys, struggles, and heartaches of living life with a brain injured son; a place where I could be creative; and most importantly, a place where I could point others to the only hope there is in this life, Jesus.

My beloved son passed away February 27, 2018, at the age of 21.  Our five-year journey left me trauma filled with a brokenness that I knew would never be repaired until I get to heaven and God makes me whole again.  How do I go on?  Everyday I am learning. Everyday I am taking small steps toward finding joy in life again and learning to live with this hole in my heart.  

At my son’s death, I also had to say goodbye to my steady and constant friend Caring Bridge.  I had just lost my child whom I had fought so hard to save, and now I was losing my creative lifeline as well…….until my friend Barb suggested in a Caring Bridge comment that I should start a blog.  “A blog?” I thought. “I don’t know anything about blogs. I would like to start a blog, but I don’t know how….. and I’m scared. What if I fail and my heart gets even more broken? I’m not very good with electronics.  In fact, I hate electronics. I’m 47 years old, and I don’t want to learn. Isn’t there a saying about that??? You can’t teach an old dog new tricks.  No, I don’t think that’s going to work. I don’t think that’s what God wants for me.”  So I talked myself out of it and went back to folding laundry, mopping floors, and waiting for God to show me what He wanted me to do with the rest of my life.

When we hit the one-year anniversary mark of TJ’s death, I noticed I had begun getting restless.  “What am I going to do with myself? Do I get a job? I really don’t want to get a job. I want to be home in the summers with Aiden, my adopted 9-year-old  grandson.  I need to make some money but what am I going to do?” I finally began to fervently pray to the Lord about giving me direction on what to do with my life.  I brought it up in my Bible study group during prayer requests, and out of the blue my dear friend Beth said, “You should start a blog.”

There was that word again.  Blog.  B-L-O-G. “I think God is telling me He wants me to start a blog,” I thought.  I really wasn’t quite sure what a blog even was. I had been taking care of a sick kid for five years and was completely out of touch with society, so I googled the definition of blog, and it said, “A regularly updated website or web page, typically one run by an individual or small group, that is written in an informal or conversational style.”  

“Well, that’s simple enough,” I thought.  “Maybe I can do this.” So I enlisted the help of my friend Lynne who also has a blog.  She helped me get set up and showed me the ropes, and now I am up and running, at the beginning of another journey.  I can’t wait to see what God does……