This last year has been a total tailspin in the medical world in our house. Well, the past two years. Well…forever, basically. If you don’t know my story, I don’t mind telling you one day. In a nutshell, I have lived in this medical world for my whole life, literally. I grew up with a dad with a terminal illness, double lung transplant, early death, and all the other things. Then came child #1 who came home on our one year anniversary. Our NICU baby who didn’t breathe when he was born like he was supposed to. He came home on a monitor that shrieked like a fire alarm if he stopped breathing, and of course we had to take CPR to bring him home. I wasn’t kidding when I said forever. Then came child #2. There are so many other details, but they aren’t necessary for you to understand the big picture that medical crisis is unfortunately my normal. It’s the way my brain is conditioned to handle stressors, things that some couldn’t navigate I have learned how to. I am the person you want in a hospital room with you. It has allowed me to have an insanely deep faith in God, be a huge fan of counseling, and I am also hyper aware of how my experiences color how I navigate life in general. Fast forward to now.
These last two years with some of the physical diagnoses H has received, we have worked closely with our neurosurgeon to decide whether or not he would benefit from a repair. Symptoms that didn’t totally make sense to us, but they were worsening by the month. Imaging was helpful but never gave us a full peace about one way or the other. This month we have seen our neurosurgeon’s office three times. We decided to trust our doctors gut along with ours and do one last set of imaging that is not usually standard. It was more anesthesia and risks that we had to weigh out. We decided we would much rather do the imaging than say yes to a surgery that could not be totally necessary or guaranteed to help him. You guys. We met with him this past week for the results and I have never been so anxious in my life. Before we went in we deeply struggled with the possibility of either brain surgery or no answers at all. We didn’t sleep well, and the days leading up were full of different what-if scenarios.
::I’m letting you in on more of the background story so you too can understand the weight of our appointment this past week::
He does not need surgery.
HE DOES NOT NEED BRAIN SURGERY! DID YOU HEAR IT IN THE BACK?!!
And can you guess what my biggest fear was? We would leave without an answer for his healing. I am beside myself with joy that we do not have to navigate another surgery, but can we be honest? I cried silently in the hallway as we walked out in defeat. Because as huge (HUGE) of a miracle that it is that this baby boy can be spared of a procedure that is major, we also are taking home the same child who braves struggles and pain every day. To walk out with amazing news but still have to tell him we don’t know yet what can fix his pain is gut wrenching. Yes, we have some direction and yes we have a gut feeling we know what moving in that direction looks like, it’s also still unanswered.
We walked down the hallway and got onto the elevator that just so happened to have the most precious boys around my kid’ s ages with obvious physical signs of cancer. Their feeding tubes and IV poles right by their side, and the palor of their skin and hair that is lost. And one H’s age smiled the sweetest smile at me. And I couldn’t process anymore. Because it’s all too unfair, and these kids, they’re the most amazing kids in the world. I was walking out with my child without an IV pole and tubes, and we were going home. The extremes of those five minutes will never be lost on me. I will never forget that moment and I never want to either. They are the bravest kids, and that smile changed me.
So, here we are. Our shoulders lighter yet heavy. A miracle so obvious and yet we are restless. Jared said it so perfectly: it feels like a finish line and a starting line at the same time. And it does.
So we cross this finish line worn out and weary, but we did it. And we start at this new line clueless as to what lies ahead, but it’s a dang good thing we don’t know what this race will look like. Would you start a marathon knowing the pain you’d feel on mile 20? Some of you may. I keep asking Jesus that maybe, just maybe this medical world I know too well can disappear soon. The visits and dynamics and all the things that come with it can just pause. And maybe it will soon, I don’t know. But in the spirit of honesty I wish it would just stop, and I tell Jesus all the time that 30 years of this has felt like plenty. But here we are. Standing at the starting line and ready to begin again. We’ll probably walk and pace ourselves because sprinting is for show offs and people who aren’t tired! All we know is with Jesus, and authenticity, and a daily posture of surrender we will start at a new line and keep on going.