|Nina exactly 1 week ago|
Day 2: Thursday August 19, 2010
Nina and I were rudely yanked from our sleep at 7am by a lab team needing to collect more blood. My poor baby...what a cruel way to wake-up...be stabbed by a syringe. Not only was I sad that they had to draw blood again, I was also sad that they had woken her up from such peaceful sleep. It had been over two weeks that Nina had slept through the night without sleep-talking/walking. I wished they would have let her sleep in longer!!
As for me, I really hadn't slept. I fell asleep somewhere around midnight only to wake up at 3 in the morning with my heart racing. I have never had my heart beat that loudly! Never!!! I proceeded to text every person I knew, begging them to pray for our Nina!! I am so thankful for such technology. While texting, I never stopped praying. I prayed that my fears would be unfounded and that Nina just had mono. Then I found myself praying for seizures again. I ran each and every symptom and assessment task in my head, over and over again. I kept hoping that I was misreading something...over-reacting. But then I'd look over at my angel, and she'd be drooling a water-fall onto the bed, her sweet face pale and with dark circle. Each time I'd look at her, my stomach would dive. Several times, I stopped looking at her, a futile attempt at controlling my stomach. Finally, around 6am I decided to crawl back in bed with her. She was snoring. She always had and oh how I loved it!
Quickly after the lab monsters left, Dr. Corraza (the neurologist) arrived. He was a sweetheart, with an old, but very cool, retro doctor's case, full of fun toys for assessment. He did a variety of motor imitation, and receptive tasks.
With each one, his furrowed brow grew deeper and my heart sank further. When he asked her to stand on the ground, she almost fell over. He turned to me and with an ever-growing look of worry said, "She's severely ataxic." I knew she was. She could barely walk without swaying and when I had asked her to wipe her mouth, she'd ended up wiping her nose. He proceeded to ask me the history of the symptoms. This was the fourth time I had recounted the events of the past two weeks and I recognized I was far from done doing so. After about half an hour, Dr. Corraza confirmed everything Dr. Wheeler had already noted. I asked him what he thought was going on and he calmly said we would need an MRI to find out what was happening neurologically. The whole situation seemed surreal. How could I be lying in a hospital bed with my peanut butter, who, aside from the occasional colds and ear infections, had been a super healthy child.
Shortly after Dr. Corraza left, Dr. Brennan arrived. I had never been happier to see a familiar face! Dr. B sat with us and I caught him up on what had transpired since we had last seen each other. All the while, Nina lay in bed watching Phineus & Ferb, drooling non-stop and looking very pale. Each time, Dr. B looked at Nina and tried to engage her to no avail, I could sense his increasing concern. The concern on his face was not simply that of a medical professional, but that of a father. He tried to comfort me as much as humanly possible by explaining what would happen at the imaging center, how the MRI procedure would go, and how quickly folks would be able to tell us what was going on.
Around 9am a nurse came in and explained that they were getting ready to transport Nina to the imaging center across the street. I thought this meant wrapping her up in a blanket and placing her in a wheelchair...but no....apparently because of liability issues they had to call a freaking ambulance and strap her to a gurney. What a total waste of money and resources!!!! No wonder our insurance rates keep going up!!! To make matters worse, Nina did not like being in the gurney. Height had become an issue for her...that is, she did not want to be picked up, somehow it made her feel unstable and caused her great anxiety.
As we climbed into the ambulance, the poor baby whimpered. In preschool she had loved climbing into an ambulance and firetruck to explore, but now actually riding in one made her uneasy and scared. I just held her sweet little hand and tried to distract her as best I could with the prospect of taking photos about her ride to tease her big brother with. Irrespective of how hard I tried to make her laugh or ease her worry, she was not buying it!
The one thing I have always adored about Nina is that she does not like bullshit! She has always been able to read between the lines. When she was younger and had repeated ear infections, I clearly remember telling her the medicine tasted good and she gave me the "you can't fool me look!" When she'd ask to watch a video and I'd redirect her by saying we could try to later, she would complain, "But you always say later!" implying that later never came:) I have always admired Miss Nina's insight and lack of patience for adult stall tactics or ploys.
Luckily the folks at the MRI center moved quickly. I love medical professionals who just move fast...no dillydallying. This is the best way to deal with kids in my opinion. When you spend too much time meandering through explanations you increase the likelihood of stressing out the child. Just give me the damn papers, tell me where to sign, and make sure you get me when my kid starts waking up! Otherwise, get a move on. And they did. The entire procedure did not take long and within an hour we were again loaded into the ambulance and headed back to the Cottage. On our way to the ambulance, one of the nurses asked me to hold onto Nina's chart as they strapped her in. I conveniently did not give her the file back once we got situated into the ambulance. Discretely, I opened the file, which wasn't really a file but a 2-inch burgundy folder with a bunch of dividers and paperwork. The first thing my eyes caught as I scanned the front page was the notes section with the words "Brain stem lesion" scribbled in poor penmanship. I remember closing and reopening the file several times before we parked, making sure I had read the words correctly!
The next 5 minutes were something like a movie to me; where you are almost having an out-of-body experience. That is, you find yourself walking and going thru certain motions. You should be freaking out, but you don't because it doesn't feel real. It couldn't possibly be real! If it were real, then surely I should be fainting or at least crying!
The ambulance pulled into the part of the hospital where they informed me they had decided to take Nina to the intensive care unit just so they could "keep a better eye on her!" This is medical code for your entire f-ing world is about to collapse. My worst fears were further confirmed, when as we walked into the ICU, I saw a group of about 7 different medical professionals lingering outside of what was obviously Nina's room. What struck me as menacing was not what they said but what they did not say. In fact, not a single one of them said a word to me as I approached; nor did a single one of them smile at me. They just all stood there, like androids, averting eye contact with me, but glancing quickly and quietly at each other. I'm not sure what is exactly taught in medical school, but there must be some kind of reform where these professional are instructed in how to handle themselves in stressful situations. Loitering and looking macabre does NOT help folks. At least have the decency to gather in your cluster in some other part of the ICU and whisper to each other out of sight. Such behavior does NOT help folks!!!! Plus, has anyone ever noticed how ICUs for the most part are drab, dark, and altogether unsettling. How about playing some mellow Jack Johnson, or having photos or paintings of the ocean. I felt like I was on the set of some kind of really lame and low budget ER knock-off.
Anyway, as I made my way through this troubling scene, a sweet nurse (I can't remember her name) with a fabulous English accent approached me. She was the first one to offer up anything that remotely looked like a smile and she proceeded to explain that Dr. Wheeler was on her way down to meet with me and go over the results of the MRI. She was also the first one to confirm my suspicions, "Dr. Wheeler wants to gather the team to speak with you because as you may have guessed they did find something on the MRI." Those words may have as well been a bullet to my heart. Instantaneously, I raced over to Nina's side, who by this time was surrounded by nurses giving her teddy bears and asking her what cartoons she wanted to watch. My little baby looked so tiny and fragile in the huge bed, surrounded by so many strangers in ugly uniforms. I just grabbed her precious hand and kissed it repeatedly. She looked over at me, smiled, and said, "Mama" in the tiniest of voices.
Just then, Dr. Wheeler walked in. She was not wearing an ugly uniform. She was wearing a cheery white and rose colored dress with a pattern of tiny flowers. More importantly, she did not give me a half smile. Instead, she gave me the warmest and most caring of smiles and asked how I was doing. She explained that we should go find a meeting area to speak privately. By now, I knew it wasn't just going to be a seizure disorder. In spite of her beautiful smile, Dr. Wheeler's eyes betrayed her. In them I saw sadness, which isn't something you want to see! That is when I asked if Dr. Brennan was around. She said no and I asked her to please get him to come in immediately. We walked out of the ICU and proceeded through a myriad of hallways and doors. Before long, we found ourselves sitting in a quite play room. My heart was beating so wildly that I was sure even Dr. Wheeler could hear it across the sofa from me.
I do have to take a breather right now and commend Dr. Wheeler's grace and empathy in delivering the worst news any parent could ever receive. She spoke quietly, body relaxed and NOT stiff like the androids in the ICU. She didn't have a huge file in her hand, just a tiny piece of paper. She did not use medical-speak or fancy words. She spoke to me like a human being, warm albeit pained for the torture she was about to involuntarily inflict upon me. Then she said it.....the words that have been permanently carved into my heart...."I am so sorry!" Her eyes welled up as she said that to me and I noticed that I couldn't swallow. It was as if my body had been torn into two separate entities; one had stopped working, while the other was trying to tell me to get the hell out of there.
Dr. Wheeler explained that they had found a tumor in Nina's brain stem...a diffuse pontine intrinsic glioma. After that all I heard was "inoperable", "radiation", "time", "make it as comfortable as possible" "less than 1%", "nothing could have been done to prevent", "probably there for a while"....."I am so sorry!"
Looking back at that moment I cannot thank God enough for holding me up and showering me with strength. I should not have been able to sit there and breathe but breathe I did, then the pain began to pound across my body. This pain was not normal pain, the kind you experience when you stub your toe or when someone hurts your feelings. To tell you the truth, I had never experienced this kind of pain. I knew it existed. I've seen it in the eyes of victims of violent crimes and wives of brave soldiers who have died on the covers of magazines. The pain that began to take over my body is hard to explain...it's like a wave of searing heat, covered by millions of glass shards that rip at every fiber. It is all consuming, all destroying. Sobs poured out. Dr. Wheeler rubbed my back and repeated how sorry she was. I asked, barely audibly, to please take me outside....I needed to be outside....I needed to get out of the room that was falling onto me. My precious girl....my sweet baby girl!! My husband....how could he bear the news that his honey girl was dying???? My boy...my Teddy...his worst fears coming to life....how could we do this to him??? He, who had worked so hard the last couple of years to conquer his anxiety....now to have to deal with this...to lose his sister....WHY????
As we walked out, texts were pouring in from my friends and family. I searched my mind for who I could call. I so desperately wanted to call my husband. Never more have I wanted to hear his voice than at that moment...but my needs did not matter...our daughter and son were the only things that mattered. And the fact of the matter was that my husband and Teddy were out together. How could I call my husband and destroy him in front of our son without any warning. This was not acceptable...I could not inflict two tragedies on my children or myself. As all of these thoughts raced through my mind like bolts of lightening, Linda Marban texted me, "What is going on....worried about you!"
Without a second thought I pressed call. Linda picked up instantaneously and I screamed...cries of pain that I never knew existed in my body. I don't even really remember what I said to Linda....all I remember is how I willingly would have died a trillion torturous deaths to replace my daughter's death sentence. I still would, as would my husband. This is the testament of love that every parent on the planet shares, irrespective of race, creed, social class. As with every step in this horrific process, God blessed Linda with the wisdom and fortitude to guide me and comfort me. She let me cry, purging my heart of roars that should only be heard in the Sahara and should only come from a wild animal. Then...she gently told me to "Take a deep breath and pull it together. You need to focus. There is much work that needs to be done!" The act of telling me to pull my shit together is perhaps one of the bravest things another person has done for me during this ride through Dante's Inferno. Linda could have easily allowed me to fall deeper and deeper into an abyss by simply consoling me. But Linda and I are kindred spirits, cut from the same cloth. She knew that withering away into darkness would not bring glory to Nina nor to God above. So pulled my shit together I did....
The first thing I needed to do was secure my son's heart and spirit for the time being. So I called the dearest of friends, Holly, and arranged for a play-date. Then I called one of my husband's dearest friends and told him to await my text and come to the hospital lobby; my husband would need his friend. Then I prayed for supernatural strength. I reached into the deepest corners of my being and MADE myself stop crying. I really shouldn't have been able to do that but God provided as He promises. I called my husband and asked him to meet me and the doctors in 45 minutes. I did not want to cry over the phone. I wanted to sit with my husband, hold hands, and have the doctors tell us what awaited our child. I wanted to help carry his pain and let him carry mine. When I first fell in love with Todd 15 years ago, I naively thought we were going to live happily ever after just like all the fairy tales. Marriage is never a fairytale. God uses marriage, and parenting, as opportunities to teach us selflessness and true love, not some Hollywood version of love. By this moment, I had conceded that marriage is not a fairytale but never had I imagined that it could be a nightmare, one marked by the cruelest of sacrifices.
I sat and cried by myself. My cries had subsided into whimpers. I prayed. Words did not come out of my mouth. Words were not necessary. My heart and soul prayed to the God of Heaven and Earth. A silent prayer to man but a thunderous sound to My Savior. I clearly remember how the sun felt. It was warm, gliding over my back. It was as if my Father was hugging me, letting me know that He heard me and that He was crying with me too.
I don't really know how long I sat outside. In fact, time has almost ceased to exist. I find myself asking people what day of the week it is on a frequent basis. All I know is that at some point, Dr. Wheeler came out looking for me. She suggested we go back inside and told me that Dr. Brennan was waiting for me. We left the sun and walked back into the darkness of the ICU. There, standing by the nurses station, stood Dr. Brennan. As soon as he saw me, he opened his arms wide and wrapped me in perhaps the saddest hug of my life.
Throughout this entire disastrous experience, Dr. Brennan's hug at that point in time stands out as one of the most significant acts anyone bestowed upon me. Where Linda's words were brave, Dr. B's hug was merciful. It was the most human and loving of hugs, a hug that I didn't even know I desperately needed until I received it. That is the beauty of grace, we don't know how deeply we need it until God pours it into our lives!
Dr. B hugged me for a long time and told me how sad he was, his voice marked by a depth that only a parent could have. I clearly remember wishing that it was all a bad dream and that if I opened my eyes, I'd be in my own bed and next to my healthy children. But when I pulled away from Dr. B's hug, there was no bed, no dream. All there was, was a nasty dark dungeon permeated with useless people staring at me. It was as if I was a hideous traffic accident and they were commuters on the opposite side of the freeway; but instead of minding their own business and moving along, they starred and clogged up traffic!
I hate rubberneckers (is that even the damn right word/expression?). All I wanted was my baby, so I went to her. When I walked into the PICU room, I found her there, watching a cartoon. I walked up and nuzzled my face to hers. She was so weak but not weak enough to keep herself from whispering "Mama" and giving me the sweetest, most blessed of kisses right on the lips.
I tried not to cry. I thanked God for the precious gift that she was! And I waited for my husband, Nina's daddy.