Zane's World

Zane almost died that day. My husband, John, said that Zane´s breathing didn´t sound right on the baby monitor. We rarely check when he is napping, but this time, for whatever reason, John did. Zane was staring, unblinking, with vomit all over him. John called me and we got him out of his crib. I gave him a bath, thinking he was sick. He couldn´t even hold himself up in the tub. A few minutes later, while I was holding Zane on the couch, his body started convulsing. I yelled to John, “Zane is having a seizure, we need to get to the hospital NOW!’

We threw on shoes and buckled Gavin, our then-three-year-old, into his car seat. I held Zane. The whole way to the hospital I backseat drove, yelling directions my husband already knew and sobbing. As soon as John pulled up, I ran into the emergency room with Zane. The staff was amazing: fast, efficient, caring. Yet nothing they did was able to stop Zane´s seizure. None of the myriad medications helped. John and I spent three excruciating hours watching while Zane´s seizure continued to progress, taking over more and more of his body. It is the only time I have seen my husband weep. If I could only take this on myself, I thought. Please, God, spare Zane.

Finally, they completely sedated him and put him on a breathing machine. They then did multiple tests, including an MRI, CT scan and spinal tap. The doctor told us Zane needed to be Life Flighted to Spokane, Washington, a larger city with more resources in their hospital to deal with this kind of emergency. At that point, there were ten other people in the room prepping Zane and doing medical procedures. Things felt completely out of control. John and I decided I would go with Zane (the whole staff couldn´t have stopped me from getting on that plane) and John would follow, driving the three hours to Spokane with Gavin and my mom. They shut the ambulance doors and I watched my husband grow smaller as we sped away. I felt utterly alone.

The flight was loud and I was scrunched into the back of the small Life Flight plane. I watched, helpless and bewildered, as a nurse and an EMT monitored Zane and gave him more medication every time he started to move. How did we end up here?!

Spokane had lots of snow and the ambulance ride to the hospital seemed to take forever. We went to the neonatal ICU at Sacred Heart Hospital. Zane had more tests run, including an MRI and lots of X-rays. In addition to a bad sinus infection, he had breathed in his vomit, causing pneumonia. That night, I stayed by his bed. I couldn´t keep my eyes off of him. I felt like my heart would crumble into a million small pieces.

I was so relieved to see my family the next morning. They had made it safely. I didn´t have to carry this heavy weight alone anymore. We looked in on Zane. The poor little guy had too many needles, a catheter, and a tube in his stomach, along with continuing to be intubated for the next day and a half. Altogether, he had almost 20 different medications. They kept him completely sedated.

The next morning my mom, Gavin and I went out to get some things—PJs for Zane, some small toys for Gavin and a bra and a couple of shirts for me. Our Life Flight had left us barely dressed and totally unprepared. Stopping into a nearby box store, I was amazed at how crowded it was. We walked through the store grieving and bewildered. The lines were tremendous! Slowly it dawned on us—it was the day after Thanksgiving and people were out in droves doing their holiday shopping. Oh, yes, I vaguely remembered eating some turkey John had brought me from the hospital cafeteria the day before.

I stood in line, feeling like I was from another planet. I couldn´t relate to these happy, normal, expectant people. I thought to myself, these people have no idea what is going on in my world. They don´t know how crushed, how heartbroken, how devastated I am. They don´t know Zane, or what has happened to my precious child. This experience continues to remind me to not assume I know what is going on for another person. It reminds me to try to interact with others with compassion, to use gentleness and kindness as my guide.

This register line was taking too long. I needed to be with Zane. I considered my options: leave the shopping cart and just walk out, or wait through this torturous line. I was wearing the bra I was going to purchase. For the first time in my life, I seriously considered shoplifting. We made it through, barely, and were back to the hospital.

When Zane started to come out of sedation, he was crawling out of his skin. Two nurses told us they had never seen such a bad reaction to coming off of the sedatives. The real concern we all had was brain damage. Zane´s first words, “Papa?’ filled us all with joy and relief. Zane started to talk and eventually walk—albeit like a drunken sailor. He was moved out of the ICU into the children´s wing; after 5 days total and one more MRI we went home.

That was the beginning.

Zane did get brain damage from that initial seizure—my perfect, beautiful, little two-year old boy. He is young—his brain will hopefully compensate. Since then, he has also been diagnosed with epilepsy, autism and sensory processing disorder. The sensory processing disorder makes it difficult to go out to events with any noise, light or people. It also makes Zane particularly inclined to get more physical input by biting and hitting, a fact that the whole family suffers from. Our home is rarely a relaxing place to be. Due to the location of his brain damage, his seizures have been hard to control with medication. This leaves us with the potential for much scarier options, such as brain surgery.

And yet I am a lucky woman. My baby survived. I still have him with me. I can still hold him, touch him, breathe him in, watch him grow. He is walking and talking. I can´t imagine the pain of actually losing a child. How do I sort this in myself, my children´s mortality? We are all so fragile, and so resilient.

Zane is also one of the most affectionate, beautiful people I know, making for a strange dichotomy. He is the best hugger I have ever met. We all get multiple kisses each day from Zane. He is obsessed with worms. Every morning, first thing while still in pajamas, Zane and I get on our shoes and jackets and go search the backyard for worms. “I found a big fat one!’ Zane calls happily and gives it a kiss. He can literally do this for hours each day.

In the beginning, I went frantically from appointment to appointment with Zane. We ranged from medical doctors and specialists, to chiropractors, homeopaths, naturopathic doctors, energy workers, spiritual healers, and the list goes on. These days, we still explore lots of options, but at a slower pace that works better for Zane. We also continually deal with local and national government agencies, nonprofit agencies and our insurance company. It takes enough time that I joke that it is my second job.

Recently, we were at the farmer´s market—a stretch for Zane on a good day. This day was not so good and Zane had an inconsolable meltdown. As I held him in the grass, an older woman working a nearby booth walked closer and put her finger to her lips, shushing him. “As you telling my son to be quiet?’ I asked. “Yes,’ she said, putting her finger to her lips again, “Shhhhhh!’ “If only it were that simple,’ I told her, resenting her uncompassionate attitude. “Obviously, he has the advantage’, she told me. My vision went red. I wanted to grab her and growl, “You have no idea what you are talking about, lady.’ Instead, I walked away, carrying my crying child.

I don´t think I could have made it through this last year and a half without support. Family, friends, loved ones from long ago, and people we have never met and who don´t even know us have reached out to us. We have had people clean our house, cook us food, give us body work, do our work for us, manage our store, watch our children, wire and install a new light in our house, buy us food, send us flowers, offer their counseling services, put Christmas lights on our house, send us care packages and send us money. I am humbled. I am floored. I am filled with awe and appreciation. How do I put into words the gratitude I feel? It has been hard to accept it all. It is a big lesson, this needing and receiving. “Thank you’ just doesn´t cover it. It feels more like, “You changed my life’ or “You give me hope.’ I don´t know how we would have done it alone. No one should have to.

My mom—Nannie, as her grandchildren call her—has been our champion supporter. She cooks and cleans for us, as well as loving and supporting my children with all of her might. She is Zane´s best friend.

Our latest challenge is that Zane has pharmacoresistent epilepsy; meaning antiepileptic drugs are not helping reduce his seizures. Based on this fact, the brain damage to his left temporal lobe, and the almost continual abnormal brain activity he is having, Zane will be evaluated for brain surgery soon. We are terrified, but also hopeful. If the surgery works, it will cure his epilepsy. If it doesn´t, we may face some of the worst nightmares any parent would have to face. It feels like an immense weight, to make such a decision for my young child. He has so much life, I hope, ahead of him. And yet, as parents, ultimately we must all make hard decisions for our children. And like all parents, we hope with all our might that our decisions are good ones.

For me, life has become a practice of trying to live in each moment, as much as I am able. To breathe, to remember that here in this moment, life is good and everything is truly OK. I continue to yell and cry and laugh and hold my precious boys with all my might. I continue, each and every day, to summon my will, to move forward and do what needs to be done, and to remember that my life is a blessing. Or as Zane tells me regularly, “I´m gonna have a good weekend.’