Mission Debrief

I want to start this by first ensuring readers understand I have not served in the military although I know several friends and family members who have. After seeking advice from my brother, who served in Afghanistan, I feel comfortable sharing the following thoughts.

There are few people who understand what it’s like to be parents to a chronically ill child. We call kids like Liam “heart warriors,” because living each day well is a hard-won victory. Being a parent to a child like Liam requires extensive training, sacrifice, and 24/7 vigilance. The last 32 months have been spent with our "heads on a swivel."

I was speaking to my oldest younger brother recently and we were discussing analogies. Even for my siblings, it's hard for them to understand what it has been like to be parents to Liam.  Separated by over 350 miles, their view is limited to Facebook, this blog, and the few days a year we spend together at various family celebrations. We agreed heart parenting doesn't get a lot of Hollywood time. Frankly, it's just not sexy enough for the silver screen and what limited time television programs give is often glossed over and mostly inaccurate. For a full soap-box tangent on terrible TV depictions, reach out to me via email or text. You will probably regret it.

For the uninitiated, the nearest approximation of what it is like to be a parent to a heart warrior is deployed military personnel in a war zone. We've all seen those movies, even if we haven't been there ourselves. Imagine for a moment you're behind enemy lines, always watching for signs of trouble, ready to make emergency choices and movements day or night. Instead of leaving your young children safely at home you've brought them along with you in the Humvee. Think of days-long skirmishes, uncertain of where the next attack will come from. Exhale a nervous sigh of relief as you experience the reprieve of hostiles disappearing sometimes for days, weeks, even months, only to return when you least expect it. The low hum of anxiety as you wait to get hit again becomes as normal as breathing. Day in and day out for years, this constant threat just beyond your sight-line is your grounding rod, your true north. And then suddenly, it's all gone. The mission is over. The objective failed. Your asset KIA. 

You get to go home, only your home was the war zone. You're safe and yet you've suffered a tremendous casualty. I've been asking myself this question over and over again since Liam died, "What does it look like to feel safe when the person you've been fighting for is gone?" And this question doesn't just apply to Logan and me, it also applies to our two daughters (remember, our girls got to tag along to witness and fight in this war, too). There isn't a clear answer yet- just this muddy understanding that we put one foot in front of the other and we learn to live in a world in which we are no longer at war.

Yesterday, Logan and I took the big step of going back to the hospital to go through a debrief of the events leading up to Liam's death with the physicians. We learned nothing in Liam's medical history could have predicted his arrhythmia and sudden cardiac arrest. We were assured everything we did at home and they did at the hospital was right, but ultimately not successful. The hand we were dealt over those 20 hours was not one anyone could have won. All things we knew already deep inside, but needed to hear from those with decades of schooling and experience.

We shared our war-time analogy with the team and the amazing social worker who has "had our six" since Liam's first few days of life. She left us with an idea which will take a lifetime to accept and it is this: As parents, we believe our mission is to protect our kids from all harm, but what if our mission with Liam was to give him the best possible life in the limited time he had? What if our mission wasn't a terrible failure at all, but an incredible success? We knew before he was born it would be impossible to keep him from difficulties so I am heartened by this concept and when I think back to the 2 years and 4 months our boy spent living on this Earth, I can see how much he loved life, found joy in the hardest of places, celebrated every single win, and reveled in the simple pleasure of listening to a quality set from his favorite musicians. Not everyone on their deathbed can say the same.

As my husband has said numerous times in the last few weeks, "I believe you today. The test will be whether I believe you tomorrow." As we process what has happened, we will wrestle with our doubts and self-recriminations, possibly forever. One day we will have victory and the next, less so. And so it goes for anyone who has dealt with acute trauma and grief- be it from a battlefield experience overseas, the battlefield of parenting a chronically ill child, or any child loss, expected or not. 

There is no easy path forward, but onward we must go, holding fast to our girls, remembering our boy with love and longing.