I guess when life has its way of moving, and oftentimes so quickly, it requires early hour sleeplessness to give me the time to do that thing which brings my heart the most healing – to write.
I have a story to share and it has been stewing on my heart since July.
I took Cyrus, Eisley and Bexley on a very last-minute trip to Columbus for the Batten Disease conference back in July. Once I realized that people who I was connected with from all over the U.S. were traveling to a place I so recently called home, I knew I needed to go.
It was good and it was extremely hard. Cyrus, Eisley and Bexley were with other children who had siblings with Batten Disease and they had such a great time! Pizza, swimming, go-carting…you name it, they had it.
I met parents and their children who were recently diagnosed as well as children who have the long-term affects that Zekey never dealt with as he went Home to Jesus so quickly.
I wasn’t faced with Zekey’s suffering for months and then it was laid out before me. I cried every morning that I was to face these families – it being only months before that I, too, was in their shoes.
I cried knowing that someday, they too would walk through grief and I just knew to pray for their souls – that they would meet the God who was so near to them in their suffering and eventual heartache of loss. The God who loved them and their babies unconditionally and would bring them a hope that brings redemption to the heartache we are left with on earth when our Batten Disease children are free, in the arms of Jesus.
The most memorable and possibly maybe even the reason why I was there, was when God really stepped in to bring healing to a place in my heart that had scars so deep from a dark place in Zekey’s journey, having no idea what was going on with my boy. It was a time when we were under the care of a neurology team who treated us terribly.
At the conference, I was eating lunch and looked over to see the woman who laughed at me when I told her some of the symptoms Zekey was having. The woman head of all the other neurologists we were dealing with at the time, who also treated us as if we were the “least of these.” A time so fragile with Zekey’s illness was also a time we were under the care of men and women who seemed more concerned about numbers than people. There are not enough words to describe how dark those days were…
I felt a pit in my stomach. I couldn’t eat. Dramatic? Kind of- but, that time in life was full of pain and I didn’t like to face it and here it was, in the form of a woman representing the many months we were under their care.
God knew this and He cared, even 2 years later – He went above and beyond and spoke to me. He wanted me to speak on behalf of the many people I came in contact with, who also had terrible experiences at this hospital. He nudged me to forgive, and I knew that meant I needed to first find the courage to go up to her with a stable heart and mind.
So, I prayed and asked God to give me the words, to have a heart that reflected Jesus and a space in time to do so- He showed Himself faithful once again.
I kindly went up to her, introduced myself and as my heart beat fast from my nervousness, my sadness, my anger and my desire to take this opportunity God gave me to shed light on the time we were under her care, to bring healing to my heart as well as to forgive, I told her about my boy. I shared Zekey with her and how He was now with Jesus. She told me how sorry she was and that she remembered him – “That strong Bible name.” she said.
This was so difficult on so many levels, but the Holy Spirit gave me all I needed to be able to separate myself from the fact that my boy was gone and speak from a place in my heart without being too emotional, and I stated the facts of our time clearly.
She listened, she seemed a bit shocked, even (which shocked me…I knew many who had shared their experiences with them). She wanted to know the details of my experience and took the time to really listen. I couldn’t believe what was unfolding before my eyes.
A woman nearby, who also worked at the same hospital, was taking notes. She said something close to, “We’ve heard rumors about these kinds of things but no one has ever come up to us and talked to us about it. – I didn’t know they were true. I’m truly sorry for your experience.”
To which I softly, and kindly replied, “Well, please, on behalf of the ones I have met, who shared a similar experience, let me confirm that these are not rumors. These are real experiences met by real families dealing with real hardships with their child whom they love unconditionally.”
I spoke about what they do well and believed the best of them – that they really didn’t want to have this kind of a reputation and maybe it was time to evaluate the bedside manner and how the neurology team treats the people that come in their paths every day, some of which will lose their child to what only seemed to be seizures for a time.
I’m sure I haven’t painted the picture well but it truly was beautiful. God was being God. He cared deeply about all the families who were under the care of these men and women. He wanted to show me the power of forgiveness and that He saw a place deep in my heart that I just tried to ignore. And maybe, sharing Jesus with them was a part of the plan, too. It always is, isn’t it?
Either way, I’m forever grateful for this divine appointment. I’m thankful He did all the things He did in that twenty-minute conversation. I’d like to think that He’s not done with their hearts, that I was just a part of a much larger picture of Him out to bring redemption to their hearts.
Do you have a place in time where you ache or have scars when you allow yourself to remember? God is a God of healing and restoration. Sometimes it means getting a divine appointment but it doesn’t have to. He can meet you in that place, that memory you have and bring healing to your soul. God isn’t bound up by time, for He created it.