Maybe it was when the hospital chaplain asked too many intrusive questions in front of him and I saw his lashes flutter to cover the fear he wanted to hide. But his eyes shuttered for just the briefest of moments and my heart started to ache.
“What is his condition?”
“How often does he need more blood?”
“Will he outgrow this?”
“What is his life expectancy?”
“Does he understand what this means?”
First, those are questions that I am not obligated to answer to any stranger. I am evasive in my answers in front of my son. Usually, I evade with answering a lot of them by talking about his Wish Trip and hoping that if anyone knows anything that they take a few hints from that turn of conversation. A Wish Trip automatically means a few things and most people know that and secondly no, I’m not telling you his life expectancy in front of him. Just no.
I also wanted to shout at the man that yes, YES he knows. And every stomach ache has him screaming and terrified. Despite our efforts to speak truth and rationalizations he simply knows too much. He sees too much. He rarely opens up about any of it to us. But in moments of sickness I see his fear. He has watched his mother hug other mothers in the transfusion bay who just got the news that these are the last days with their child.
And he has seen his Mama try to hide her own tears and her own fears when the doctors talk of rejection. And he was in the room when we talked of bone marrow transplants and I pointedly asked what the survival rate and rejection rate was and then determinedly refused to entertain that treatment option. He heard the doctor talk of the side effects of his medication. And he asked me why he has to take something that could be so bad.
How much do we tell and how much do we hide?
Can I just tell you honestly that I don’t know the answer to that? There are truths that I have as the parent of a child with a severe, life threatening condition and there are truths that my son holds as the one who has the condition. And our truths collide. They mesh together and yet stand alone. They are the same, yet they are different. And their lifelong dance is painful and awkward.
What can I tell him? He knows his friend didn’t live to the age of seven. Yet, I told him we have medicine and doctors who will make sure that his story will be different. Then one day he asked if he would be a Grandpa someday. One day he asked how long most people live. And the truths in my heart fought valiantly over which truth should be spoken that day to that need, to that question.
Then sometimes I feel utterly ridiculous because we have friends who would love to talk about adulthood with their children. Y’all, this parenting thing is hard. So hard. This adulting thing is hard! And I don’t know that I’m getting this right on any level most days. I just pray for grace.
There are moments when I manipulate the truth so we don’t have to dig into our reality in the middle of a crowded room. There are moments when I am too honest about it. I spout facts with all of the coldness of a medical journal. And I pray that Christ is in our midst and somehow redeeming the poor choices that I make in the middle of confusion. Please Jesus, breathe grace into the truth.
Because I don’t know how to do this somedays. I reassure him that a sore throat won’t kill him all while I am taking his temperature to see if we have to go to the ER and check to see if an infection entered through his port. Because a sore throat is never just a sore throat to us. Every illness, every temperature above 98.6 feels like a threat. And I try to hide him from those threats. I mean ERs are fairly awesome looking these days so I distract with promises of toys and adventures.
I don’t know what I am doing half the time. I just don’t. The answers to questions that no child should ever even have to consider are sometimes just too big for even me to think through. There should be a better answer for this. This post should be able to expand more deeply on this subject. But I’m human and these questions enter a realm which humanity cannot fully grasp.
So, I lean on Jesus. I cling to Him. And I tell my son about the Healer of all wounds. Jesus knows our fears and our pains and so while I sit and rub his hurting belly I sing to my son of the One who will never leave us, the One who will bring us final healing in every single way. I tell him that today he is safe. I tell him that I love him and I always, always will. And that my love is just the tiniest, smallest glimpse of the love God has for us. And someday, some beautiful day we will spend forever together with this precious Christ.
That’s all I’ve have most of the time. Confusion, hope, pain, and Christ. And I know that at the end of the day Christ is so strong, so powerful that the only piece of our puzzle that matters is Christ. We have Christ and He is enough for all of us. He covers our fears. He redeems our mistakes. He is everything. We have Christ. My son has Christ. Those are the truths that I choose to claim today.