From the very beginning, I had a difficult time sharing the details of his status. I wanted to hide it from everyone. I didn’t want everyone to freak out, but I also didn’t want to have to relive those moments. I was not ready for people to ask “what happened.” What if this was somehow my fault? What if he didn’t make it? How do I tell people that he’s clinging to life by the narrowest of margins when I can barely grasp that fact myself? Thankfully, our parents fielded all of the questions and status updates. I turned off all of my phone notifications except the call ringer. That stayed on the highest volume. The only thing I wanted coming through my phone was our transplant nurse’s voice telling me we had a heart.
I desperately wanted to keep everything a safely-guarded secret. I was so afraid of N becoming a freak show. I could just see people pressing their noses up against the glass to catch a glimpse of the boy on life-support. Except in our case, his exhibit existed on Facebook. I didn’t want people curiously snooping in on our struggles. And I certainly didn’t want photos of him being taken or passed around. I had no control over his treatment, his recovery, or his future. All of that rested in the hands of his medical team. But how his story was shared was the one thing I had any smidgeon of say in, and I didn’t want to lose one more element of control on the situation. In my mind, the more people that knew about everything, the less control I had over who they told. So for me, the answer was to tell no one.
When the dust finally settled on our first rodeo with life-support, my husband finally convinced me that we had to let family and very close friends know what was happening. How could they not know something was wrong? We had virtually disappeared, not just from our home, but from social media as well. I had ignored text messages from my closest of friends, ashamed to tell them why I wasn’t responding to them. It took several days of discussions, but we finally compromised that we needed to tell people something, but we didn’t need to tell anyone the details. We needed to share with the world that we were going through some tough times, and that we might be out of pocket for a while.
When we finally did share what was happening, we did so through some close family friends of ours. They shared our story in a GoFundMe page to help raise funds for N’s medical bills and our relocation costs. There was such an outpouring of love and support that I could hardly keep up with everyone’s generosity and well-wishes. I was stunned. Even strangers pulled together to help us. This was when I realized I couldn’t hide any longer. The world was out there, whether I was ready for it or not. And it was full of kind and caring people willing to take care of our house, send us care packages, and offer very much-needed encouragement. But we wouldn’t have gotten that help and support if I hadn’t listened to my husband.
Sharing your struggles is incredibly difficult. It exposes you; it reveals to everyone your raw emotions and vulnerabilities. It can make you feel naked, utterly unprotected, and completely visible to the entirety of the human race. I remember feeling like my own heart was going to pound out of my chest when I saw the initial Facebook post. There it was. N’s story was out in the vastness of cyberspace, and there was no getting it back. My pulse drummed in my ears every time I thought about it.
But unless you share those struggles, people can’t help you. Think about the song Lean on Me. There’s a line in the lyrics that perfectly summarizes this: “For no one can fill those of your needs that you don’t let show.” This is a resounding truth. You cannot expect help from people if they don’t know you need help. And believe me, I needed help. I didn’t want it, but I needed it. Allowing people into your world can help relieve some of the burdens that come from being in a transplant situation and environment, and it takes away some of the loneliness.
It’s okay to depend on others for support. Friends that you trust can help take care of pets, yard work, meals, babysitting your other children, everything. My boss even came to visit us in Gainesville to make sure we were okay. You’ll be surprised to see how much people can and want to help you when you need it most.