The Miracle

Dear Sebastian,

Today, March 9th, marks the anniversary of the day your “miracle” arrived. It is a day that many of us revisit every year through no choice of our own.

March 9,1995 has held its place for many, many moons as the worst day of your life. I can already see the eyes rolling, but stay with me. As you have mentioned often over the years, you have no memory of it. Trust me.  At the time I was unequivocally grateful that you would have no memory of the horrors you were enduring. It is one of the blessings one receives when illness strikes at birth. However, I would like to give you a glimpse into that day and why you and your “miracle” matter to those of us who do.

It was a Monday on March 6, 1995 that I made an appointment for you to see the doctor. I’m sure they were thinking along the same lines as me. That this was just some first time mom worries. I was a bit embarrassed even making the call. Our friends, John and Jamie, spent the evening with us the previous night and convinced us to look into it. Calling to tell the doctor that you had a hard spot just below your lower right ribs, thinking you were born with one extra made me feel silly. My guess was that they too thought it was silly. Nevertheless we had a same day appointment to see the PA.

He examined you and left the room. He returned with the doctor who delivered you. Then several more arrived. At this point you weren’t even visible as the doctors all huddled around you talking to each other and not us. It was more than obvious that it wasn’t first time mom worries. We were given orders for a CT scan to be done right away. We were to get the scan and return to the office. I saw the mass light up on the screen. I watched as it was measured and knew it wasn’t good. Grandma held you in the waiting room as I sat in a small exam room with Dr. Banka. He said that you had a large tumor on your liver. He said that it was more than likely cancer. Then he handed me a box of tissues. Until this point it hadn’t occurred to me to cry. All at once reality began catching up to me and the flood gates opened. I don’t remember the tears stopping the rest of the day. There would be many more in the days that would follow. Dr. Banka said that he hoped that it would all turn out okay, but that it probably wouldn’t. Even at the time I thought that a strange thing to say.

Grandma cried with me the whole way home. You were smiling in the back seat oblivious to the chaos swirling around you. I remember being torn about telling your dad. I had this enormous sense of urgency. Yet I knew that once told, like me, he couldn’t un-know. I don’t remember his reaction, but I do remember Meemaw’s. She sounded very much the way I felt.

That night I did not sleep. I also didn’t put you to bed. I held you and sang ‘Somewhere Out There’ and ‘Jesus Loves Me’.  I held you and cried. I held you and started a journal. I held you and prayed.  I held you and begged God to make it all go away. I remember that it was the first time since your birth that I could no longer picture a future for you. You and I were frozen in time. We couldn’t go back to yesterday no matter how much I wanted to. We couldn’t go forward into tomorrow because I didn’t know what tomorrow held. I remember wanting to just stay there with you in my arms memorizing the smell of your hair, every sound you made, every eyelash, the way your lips puckered when you slept, the exact shade of your hair color. Those too few hours were heaven in the midst of impending hell.

Tuesday March 7, 1995 Beebaw and Meemaw drove you, dad, and I through an Ice Storm to Spectrum Hospital in Grand Rapids where we were told would be your home for the foreseeable future. We were given the name of the pediatric oncologist who would be meeting us there. We still weren’t sure what to expect. I remember being so grateful for Meemaw and Beebs for being there. Your dad and I were not yet equipped to watch you even get your first of a thousand pokes. Their strength gave us ours.

Your room was decorated cute and had a lovely view. We put you in your little gown, sharing a rare giggle because it was pink. They put an IV in your head and taped half of a paper cup over it to keep little hands from pulling at it. I believe Meemaw still has it. Then we put you in bed and watched you. You began to get very fussy until it occurred to us that you probably didn’t actually need to be in bed. You felt fine. We found a walker, a bouncy seat, and a swing. Your room was packed, but you were happy when you weren’t being poked and prodded. You spent the rest of the day and all of the next squirming through test after test. It all seems to blur at this point. We met Dr. Axdell, a quiet and reserved man who explained everything that was happening and why it had to be done. I remember needing even the tiniest minute detail of every single thing that pertained to what was wrong with you. We were told that there was a chance that the tumor was benign. Dr. Axdell would do test after test right up until thirty minutes before your scheduled surgery slot hoping to somehow derail the train coming straight for you.

Dad and I were told that your tumor appeared to be cancerous…hepatoblastoma to be exact. Your odds of surviving the surgery alone were a dismal 50%. As your parents, we were given our options. We could do the surgery to give you a fighting chance, but risk losing you on the operating table. Or we could forgo the surgery and have at least another year with you, but we would slowly watch you die. There really were no options. We chose surgery, but questioned that decision every single second. You would have surgery at 2:00pm the following day.

We were told that 5:30am was the last time you could eat. We both held and fed you. You smiled up at us content in your own little world. Nana let us borrow her camcorder. So in the wee hours of March 9, 1995 Dad and I took turns filming you in your swing. We couldn’t stop. We knew that this could easily be the last few hours of your life and we needed to record all of it…your smiles, your balled up fists, the deep brown color of your eyes, your endless kicking that looked like you were running in place. We knew that we were running out of tape, but we also knew that we could be running out of time with you. We knew we would need that tape if…

You and Dad went back to sleep. I laid on the hide-a-bed and prayed. I’m sure I bargained with God for hours. I begged Him to take me instead. Every parent would. I don’t think anyone in your family slept well that night.

At 2:01pm a surgical tech came in to get you. We weren't ready. We never would be. You weren’t ripped out of my arms, but it felt like you were. I will never be able to fully describe this moment because I cannot get back to it. Either my brain chose to protect itself or God wiped it away because handing you to a total stranger who was either going to save you or watch you die is something I still can’t wrap my mind around. In that moment your dad and I broke. Each of us lost in our own version of hell.

Dad, Nana, Papa Ben, Grandma, Meemaw, Beebaw, and I sat in the waiting room anxiously awaiting even the smallest update. The nurse who was given this task was our lifeline. She gave us the hardest news after you were through it. Your hepatic artery was hit and you nearly bled out on the table. You were seconds from death. The surgeon, Dr. Conner, used a microscopic needle and thread to sew it back up. We were told your tumor looked to be cancerous and was the size of a large lemon or a small orange. You would lose the entire right lobe. Up until this week we weren’t even aware that it was capable of regenerating itself. Before you were taken away time moved at warped speed. After it was excruciatingly slow. Tensions were very high. The endless hours were broken up by various visitors throughout the day. My teacher and principal from my school came to pray with us. I remember her asking how we were handling all of it. My response was that I didn’t realize we had a choice. Grandma’s pastor came up to pray with us. We were so touched by this. Family members and friends arrived in droves. Their presence meant the world to us.

Still the hands of the clock seemed reluctant to move. Finally at 10:30pm Dr. Conner came out to tell us that you survived the surgery. He explained in great detail everything they did, but nothing would ever prepare us for what we were about to see. When we were allowed in your ICU room you were in a diaper, uncovered. Your little body was so swollen you weren’t recognizable. A ventilator was breathing for you. Your angry red incision ran from your back and across your abdomen. Only staples held you together now. There were two drainage tubes on either side of your belly button. Your wrists were both cut down to your arteries to obtain easier access and those were stitched up. Another line (we would learn was a broviac) came out of your chest. You also had stitches here and in your neck where it was inserted. There were too many wires to make any sense of them. Our perfect baby from hours earlier looked like he had been butchered. You essentially were. Dad filmed a minute or two until I asked him to stop. You began to wake up. I will never forget the look in your eyes. You made a soundless cry that could only come from an unholy pain we could never know or understand. What was obvious to both of us was that you needed comforting and we were woefully useless. I remember worrying that you were cold and wondered why they didn't put a blanket over you. I tried to touch your hair and whisper reassurances in your tiny ears, but was shushed by the nurse. We were told not to touch or talk to you. Looking back I always wished we had told that nurse just where she could stick her orders. The ICU didn’t allow parents to stay so we spent our first night away from you. Dad and I went to the Ronald McDonald House. It was late. We had the game room to ourselves. We put your tape on and watched your smiling self in your swing for hours. It comforted both of us immensely. At least until the last two minutes. Our little bubble of make believe burst. Sobered up, we went to bed at least grateful that God brought you through the day. We succumbed to the exhaustion and got a few hours of sleep.

The days following your surgery we were shown exactly how strong you were. I’ll just say it. You were a three month old bad a$$! On day three or four post-surgery they took you off of the ventilator. This was huge. You were amazing us at every turn. That night at 3:30am we got a knock on the door with a phone call from the hospital. Pure unadulterated terror is the only way I can describe how Dad and I were feeling. We knew that if we called we were going to be told that something had happened and that you were gone. I couldn’t bring myself or even calm myself enough to dial the number to the hospital. When my hands finally slowed in their shaking I called. You had suffered a collapsed lung and had to be put back on the ventilator. We didn’t know whether to cry, laugh, or scream at the nurse for scaring us half to death. It was definitely a setback, but you were still here. This we could handle.

Your recovery happened in baby steps. It was well over a week before we could hold you. You still had the drainage tubes, but I was able to give you a sponge bath and hold you. You even gave us your first smile. The pathology report took a week to confirm, but when I was told you had cancer I still cried. You had come so far and yet your chance of survival was still only 60%. Your fight was just beginning. After two weeks in the hospital we were free to take you home for the weekend. Chemotherapy would begin in two days.

You were to be given three types of chemo meds. One was going to damage your hearing. You would be hearing impaired. To us, it was a fair trade off. We were given information about the side effects of each. Not even back in the hospital 30 minutes the doctor punctured your bladder using a catheter that was too big. I asked the nurse if red urine was normal. She said that it was not. She didn’t seem at all concerned. We were and with good reason. When they removed it the next day large blood clots poured out of you. A urologist was brought in. He banned all future catheters opting instead to simply weigh your diapers. This was a blessing. Still the chemo took its toll.

Children who receive chemo don’t understand that they should be sick. You would vomit and smile seconds later. But, you suffered many complications. Your immune system became nonexistent. We didn’t leave the house. I was tasked with giving you shots every day. I learned to clean your broviac daily and draw blood from it to take to the lab. You were on nine different medications at various times throughout the day.  Even with all of the precautions you developed mouth sores that went into your ears and down your throat and into your stomach. You had to be sedated for a week to let you sleep though to unbearable pain. I cried when I found your peach fuzz hair on your pillow when you lost it to chemo. You had to be given platelet transfusions because you were fading fast. Chemo is meant to kill the cancer before it kills you.

Shortly before what was to be your last chemo session they found a mass in your lungs. Dr. Axdell broke the news that your odds of survival now went from 60% to 40%. The celebration for your last chemotherapy session never came.  We were once again reminded that your future wasn’t promised. Although they determined that it was scar tissue from the collapsed lung we would have these scares for the next three years at every single visit. Something new popped up over and over.

It is hard going back and revisiting this time in your life, but I don’t just remember all of the bad. Yes, this was the hardest time of our lives. But, we also look back with a great deal of fondness. You, dad and I were given so much compassion, love, and support from family, friends, and even total strangers. God met our every need. When we were short on rent because of all the time your dad had to take off work grandma’s church unknowingly took up a collection for us and gave us the exact amount (down to the cent) we needed to pay it. There are so many examples. Your Aunt Julie, Amy, Nina, and Craig would visit often, not knowing she would soon suffer a similar plight. Your grandma Dolly and Grandpa McGregor bought us a car so we could make the drive back and forth to GR and came often to see you. All of your aunts and uncles were a constant presence. We were held up with that love and support when we were no longer able to stand on our own.

As you became older you would often ask about your scars, especially the largest one. I named it your miracle. Because to me it was that and then some. It is the reason you're still here. But it was also because you didn’t like being different from the other kids. When you became older and friends would ask about it you would come up with some really funny stories about ninjas or pirates. Once at a soccer game when you were four a woman asked about it. You cheekily and incredulously responded with a, “Well my mom calls it my miracle, but I honestly don’t know why.”

I am so relieved that you don’t know what all the fuss is about. You don’t want to be defined by a disease you had when you were too little to understand. But those of us who do remember it cannot look at it any other way. There hasn’t been one day when I haven’t thought about you and thanked God that you’re still here. (Even the days when you made life miserable and I wanted to smack you into the next week). I cannot un-know it. I cannot un-remember it. None of us can.

When you lost your hearing we were sad, but when you began to show a real interest in music and singing my heart broke. I couldn’t tell you that singing wasn’t something you’d be good at. When you joined choir I was happy for you, but I honestly thought you’d be in the background. I was just thrilled that you found something you enjoyed about school. Your junior year when you had a solo I sat with tears in my eyes listening. You don’t see it as anything special, but I can’t see it as anything but.

You lived the hardest part of your life in your first year on earth. Those of us who were there have always known that your life was meant for something great. God didn’t bring you through so much to just forget about you. Being an adult is hard. Figuring out what you want to do with your life is harder. But, if you could only see in yourself what we all see, you would already be acquainted with your inner bada$$ and know that the rest of your life really is gravy. Just find what makes you happy and do it. You will never be fully happy until you are doing what God made you to do. The biggest hint He gives us is in the gifts we were blessed with and what we really enjoy. So what makes you happy and what are you good at? If you’re still wondering, ask. You really were made for greatness.

Love you Kid,

Mom