if you are what you eat, then it also makes sense that you are what you see, look at, and watch. It’s one of the reasons why we have no TV and advocate for others to kill their television. It’s a huge reason why we are no longer on social media.
Tonight we watched one of those brilliant BBC nature shows about Africa with the boys. About an hour later Zion, Tyler, and I were playing upstairs and Zion said, “I’ll be the beetle..you be the baby bird Tyler, and mommy you be the mommy bird…” Everyone understood and assumed the appropriate position. Tyler curled up in the fetal position, mimicking the pale, thin-skinned baby birds in this particularly gruesome scene. Then Zion slowly crawled toward him with a menacing look in his eyes and just as he began to attack he said, “ok mommy! now you!” I flew in and did what the mommy bird does in the scene.. punctured the nasty insect with my beak and saved my young. We took turns replaying the scene until each of us had gotten a chance to play all the parts. Then, just as quickly as the improv session had begun, it was over. They raced down the hall to go play something else.
It made me think. Out of that entire show, my five year old picked up on the scene that was the most memorable to him, and then he later wanted to act it out. It made me all the more thankful and aware that having a video gaming system and television just wouldn’t be good for our family. Our boys are still in what I like to call their sponge years. They are soaking up the world around them and trying to make sense of what they will think, do, and be. I don’t know much about the games and shows that kids get into (I know, I know, I sound like grandma parsons over here), but I know that many of them involve gun violence or are degrading to women or minorities. The real, natural world is interesting and hardcore enough. It involves giant insects that prey on baby birds half their size and mothers who are brutal and protective. I’d rather our boys be influenced, albeit infrequently, by that type of stimulus than see them live vicariously through a digital world that involves guns. Especially after the insane and devastating tragedy that happened in Orlando.
Since we are what we watch and I think we can all afford nine minutes to have our minds expanded and blown a little bit. Here’s something I watched recently that did just that.. a video by Charles and Ray Eames from 1977 called POWERS OF TEN. Watch full screen and enjoy the mind trip.
Did your parents ever say that to you? I remember hearing it once or twice as a kid – when I was being disciplined or in some kind of pain, and thinking “no way”. Now that I’m a parent, I feel it. Kids are resilient. In many ways, they don’t know how bad the bad is. It’s us adults who have been there and know what it takes to recover and heal from our pains and failures.
It’s been a week since Zion was admitted to the ICU for episodes and we are finally home, as of last night. Long story short – Zion may be having seizures or he may be heading for another brain surgery in 4 weeks due to a shunt malfunction. There are a lot of signs pointing to and away from both, and there are a lot of doctors putting their heads together daily on behalf of our son to try and solve the riddle. Last night they sent us home with monitoring equipment for Zion, to make sure we can call 911 if an episode happens in his sleep, completed CPR training, anti-epileptic meds that make him just a tad insane, and an emergency plan for what to do the next time one of these happens.
I am thankful to be home, but home feels different now. Knowing that another episode could happen at any moment keeps my shoulders in a constant posture of not quite letting down. I’ve spent so many hours this past week overthinking his symptoms in my head that my brain now feels like an overly-flipped pancake… not able to just sit and cook on one subject. This past week, I have done my fair share of holding him like it’s my last time, obsessing, crying, worrying in the middle of the night as I stare up at his monitors, and praying. But then I looked at my son towards the second half of this week, watched him with the hospital staff, and realized he was loving life almost as much as he does at home. He doesn’t like the part of the hospital stay where he gets poked with needles or the moments when he is frightened and in pain but otherwise, he’s a pretty happy kid.
Yesterday one of his rockstar neurologists asked him, “are you ready to go home or do you want to stay here?” He told her he wanted to stay at the hospital. He told me he likes his hospital and he loves his doctor friends. As soon as he said it, I remembered something really unique about my third child – The children’s hospital was his first home and living with persistent medical issues is all he has ever known. He is growing up from the ground zero of familiarity with pain, struggle, monitors, medical staff in bright colored scrubs, cable TV, vanilla milkshakes, blood draws, MRI’s and CT scans, and all the rest of it. In Zion’s experience, ignorance is bliss. This is his life and most of the time he has very few complaints.
I know a different life. I remember what it was like to be a healthy, happy kid, taking it all for granted, my worst pain being boredom while I watched my mud pies dry in the sun. I know what it’s like to raise two other healthy boys whose biggest medical hurdles are a low-grade fever once a year. Over the past five years I have been growing toward the responsibility I have as Zion’s parent .. towards the diagnosis he was born with and every new one they discover. I’ve grown towards words like congenital hydrocephalus, grade IV intraventricular hemorrhage, intracranial pressure, ventriculoperitoneal shunt placement / revision, cerebral palsy, hemodynamically stabilizing, bradycardia, tachycardia, and countless more. I’ve grown toward the pain of frequenting a children’s hospital and the measures we all take to make Zion want to come back because we know that, for kids like him, they always have to.
So I spent a good part of the week crying, worrying, praying, and asking a million questions every chance I got. Then I looked over at him to see a little boy living what he experiences as a perfectly normal, wonderful life .. giggling while riding the tricycle around the hospital hallways or making a craft with one of the volunteers or holding a dog on his lap on “pat pals” night or helping his care assistant change his pulse oximeter probe or asking his nurse her favorite color while she gets him ready for sedation for the next MRI. That’s when I realize it’s true -
“This is going to hurt me more than it hurts you.”
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.