Four months old. Only way for him to live…a liver transplant. A liver transplant. Only way to live…
I remember driving home from the hospital reeling from the news that the only way our little guy—our four-month old tater tot—had a chance at living life was to undergo a liver transplant.
My head was spinning. Thoughts spiraling out of control, made up of worst-case scenarios. I dreamt thoughts that should never be in your mind. Over the last five days we went from being a brand new, confident, filled-with-love family of four to hanging dangerously on the edge of life. I cannot imagine what my driving was like, so if you were on 71-south I apologize!
One of the things that was making me nauseous was how in the world was I going to explain this to our daughter.
She was an “older” three at the time and over the last week we had gone from living a carefree very normal life to falling down some Alice in Wonderland rabbit hole where I kept waiting for the cameras to pop out and say, “Well, that’s a wrap!”
I corralled my crazy thoughts and set them on a mission: How in the world do people talk to their kids about this stuff?
My baby girl. She was so little, she needed to be protected, she needed to be sheltered, she was too innocent to have to deal with real world problems. She needed to be worrying about what dress up shoes to wear with her princess JAZZY costume, not what was wrong with her baby brother.
As innocent as her little mind was, this is also the Nancy Drew super sleuth little lady who figures out that we are going to Swings N’ Things days before we announce it. The P.I. who always knows where the sweet treats are hidden, the information gatherer from conversations of big people, “Hey Mama, what did Miss Rachel mean when she said ‘tatas’?” Oh boy…
I quickly came to the realization: IF YOU DO NOT TELL HER TRACI, SHE WILL FIGURE IT OUT.
My job as a mother is to protect my children, help my children and nurture my children. As heart breaking as this was, this message needed to come from me, my way, the way I wanted her to understand it.
There are no do-overs with the way children learn and how they internalize things. I had to set the record the way that we wanted it – filled with truth, honesty, hope and belief.
WE had to tell her, on our terms, in our way – she had to hear it from us.
If your child is sick and or a child’s friend is sick, or even if adults become sick, here are some tips for this part of the conversation. These are the guidelines that I followed:
- DO NOT over talk or explain (which we all do because we are human and nervous.) Instead, keep it simple.
- DO NOT tell them everything will be okay- Let them know they are getting special care with their team at the hospital AND there are very special doctors, nurses and others that will work very, very hard to TRY to get them better.
- DO NOT be an emotional hot mess- Be as steady Eddy as you can. Children quickly focus on your emotions instead of what you are saying. IF you feel you cannot do this, you may want to consider someone else that you love and trust to help you have the conversation (or a Child Life Specialist at the Hospital).
- DO NOT be Negative Nellie- Be optimistic Ollie. Again, reinforce that people will be working hard to help them feel and get better.
- DO NOT feel like you have to know everything- Say you are not sure, but you will find out.
- DO NOT make the illness feel isolated- Let them know that there are others – families, friends, etc. who also have people going through this.
- DO NOT get angry when they ask why- If you are a faith-based family help them understand God creates us all different and unique. Or, if you are a science-based family help them understand that we are all created differently through genes and DNA.
This is how our initial conversation went down. I first made sure she was in her safe spot. There was minimal distractions and I opened with:
“Harper, I need to tell you something very important. You have noticed that Brodie has been in the hospital for awhile right?”
Threenager sigh, “Yes Mama, and you have too!”
“Well the doctors have found out what is making him not feel good. His liver is very sick.”
“Mama –Mama –What word did you just say? What is a liver?” followed by nervous giggles.
Oh boy, here we go. How in the heck am I going to explain this? I think I just had on repeat: keep it simple and fun, but wait is that possible? How do I make this fun?
“Well Harper you know how you have a heart that beats (Place hand over heart and we made the noise thumpity thump thump thump thump thump!) And you know how you have lungs to breathe (Take a deep breath and blow it out. Do it again and again faster and faster until we burst into giggles). Those things keep our body working. We also have a liver that works with the heart and lungs, and it keeps our body working too.”
“So, in order to get your brother better someone is going to have to share their liver with him.”
Literally her response, “Well how in the WORLD HECK is someone going to do that?”
I burst out laughing, “Well THAT is a great question H. The doctors know just what to do. They have special tools to do this.”
Harper looked at me saucer eyed, “Mama where is your liver?”
I showed her, gently placing her hand on her right ribcage. “Right here.”
Saucer eyes are now planet sized. She takes a short deep breath in and says almost like she didn’t believe what she was going to say, “So what do they do? Cut you open or something?”
Holy Crap. What do I say? What do I say? Be a truth speaker my brain said to me. “Yes they do with their special tools.”
Incredulous blue marbled eyes inspected my face for a sign of joking or teasing. She found none.
“Oh. Okay.” Was her response.
I breathed in a short deep breath and waited…
“Mama, who will share their liver with Brodie? Who will do that?”
This hit a nerve with me because I didn’t even know the answer to this. My eyes slowly were feeling like there was someone peeling an onion around me and I could feel myself about to jump off the emotional cliff side. I breathed in deeply and replied with the first thing that came to my mind.
“God, God will decide Harper…and the doctors. They are going to find the best little liver for your brother and they will let us know.”
Harper looked over at me thoughtfully and said, “God sure knows what he is doing. He is always helping people.”
At my breaking point I sputtered, “Yes H – you are so very right.”
By no means am I an expert. Making it through this life test and continuing through this life everyday, I have learned that you are in fact the author in your own story telling. The voyager in your own journey. You can decide for yourself and your children how in fact you create the novel that becomes your life story.
In our little world, our Liver Tale has become one of warriors, battles, chiefs and heroes sautéed with good vibes only and sprinkled with faith. This has quickly created a non-fictional inspirational story. It is all about a second chance at living and loving the life that you have.
We are fighting and winning and we continue to use the guidelines above as we create reasoning to the unknown for our now very smart and inquisitive 5-year-old and our little 21 month old guy, who is just starting to understand what life is all about.
I would love to know if you have any advice, ideas or more guidelines. Lord knows in this lifetime we cannot have enough.