when your baby is in the hospital, you accept the path in front of you, and you find healing in a mexican cantina

Zion was brought to the emergency room at the Children’s hospital on Saturday, admitted to the ICU, and five days later we are still hospital residents. For 50 hours, his brainwaves were monitored on an EEG machine and countless tests were run before and after. I could go into his medical history and his broken brain / life with a shunt but it doesn’t seem necessary today. For months now Zion has been having episodes that look a lot like seizures and as of last week, the episodes were accompanied by his breathing slowing and stopping. So we’ve been in the hospital for days, with pediatric neurologists and neurosurgeons doing test after test on our baby boy, all trying to understand what’s going on with him and how to fix it.

People always ask, “what do you need?” in these times.. but the reality is, in moments of crisis and the potential loss of a child, what we most need others can’t give. Deep down, we all know this – it’s part of the human condition. So when you’re in this situation, you learn to accept whatever is offered as a sign of solidarity and love. You learn that relationships (the real, un-digitized ones) are two people agreeing they can’t actually fix anything for each other but they will be close by anyways. They agree to be partners of hope in the “un-fixing.” You learn to say “yes” to every offer that nourishes any part of you – yes to the guests, yes to your sister in law driving across several state lines to come visit, yes to friends bringing you dinner, yes to the glass of wine someone snuck in, yes to grandma taking care of and entertaining the older boys, yes to the prayers and songs and balloons and milkshakes and not-Folgers coffee.

You accept it all and say thank you and, for a minute, feel a slight sense of relief.  But the sugar high wears off and the visitors leave. In those moments after, of long solitude, in a building where children come to both heal and die (and where yours could do either), you have two choices: cover up and hide or accept the path of pain before you. Both responses are appropriate and you have little choice over which one you will choose and when.

For Jeremy and I, this trip to the hospital has been one of acceptance. Maybe it’s the fact that this all happened only two days after Zion turned five. The five year mark of sorrow and struggle has always seemed to lead to acceptance in my experience. But even more than some calendar mile marker, I think it’s been the Holy Spirit, the still small voice hovering in and around letting me know, “this is the path I have chosen for Zion, for you, for your family’s story.”

thanks, auntie oonis, for the photo.

I’ve wanted to fully accept Zion’s medical risks and issues but I’ve also wanted to be in enough control to have an uncomplicated, normal life. With a career that requires that I travel and be gone for very particular, set-in-stone dates, this way of life has been unrealistic … I just haven’t accepted it until now. Acceptance means admitting that having a child with chronic medical issues means your “normal” is not ever going to be the same as everyone else’s “normal.” Other people are going to have healthy kids with fully functioning brains. Other people are going to be at the pool shouting at their kid to stop running on the pavement and you are going to be in the ICU hoping your kid starts breathing properly again. Other people are going to be flying to Disneyland for vacation while you are going to stay in a 30 minute radius of the hospital at all times. Other people are going to be dealing with the everyday stresses of life, while you are wrestling inside yourself with the fear of death. Everyone else’s normal is only helpful if it’s something achievable. With a broken brain and failing mechanisms to keep it running, the “normal” version of normal isn’t in the cards for Zion. Which means that, as his mother, it isn’t in the cards for me either, at least, not in this season.

In my experience, acceptance means you find ways to be strong and fully present in the moments when much is required of you. If your baby is crying and scared, you smile and are calm and reassuring. If the doctors are missing a key part of your child’s history or treatment, you boldly ask the questions necessary as an informed advocate. You drink lots of crappy coffee and you unintentionally miss meals, because tests are way more important. Then you have your husband stay with your son for an hour so you can go on a walk to the nearby park, cry like a baby, and wipe your snot in the grass.

But here’s the thing you won’t know about acceptance until you are there.. it comes with an unexpected perk – the ability to find joy in where you are instead of wishing about where you thought you would be. So you make the most of it all, not in an optimistic way, but in a wise, hard-earned, minute to minute, hope-filled way. You order vanilla pudding every meal and you don’t feel guilty about it. You go on walks to remember how good fresh air feels, not to burn calories. You take an hour break from it all and walk to the Mexican cantina a couple blocks from the hospital and you drink a beer and eat a taco and listen to mariachi music, remembering that this experience can heal parts of your soul you didn’t even realize were wounded. And when your waitress tells you she already paid for your meal, you smile and laugh and say “thank you” because God loves to be surprisingly good in the moments when things feel bad. And you pray. You pray honest, confusing, messy prayers. You let go of pretense with others and with your Heavenly Father, and you accept that this is your path now. You don’t know what’s up ahead, you don’t even know how tomorrow will go,  but you know that in this moment you need to text a friend or call your mom or eat a taco. And so you do.

 

all prayers and words of love for our family and for zion are so, so felt and appreciated.

lovingly,

ash

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Kristin Moore Dear Ones. I am praying for you and your beautiful family. Love you.June 14, 2016 – 8:21 pm

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