My Boy has made such exceptional progress we are looking at getting out of here in 3-6 days!!!! GAHHHHH!!!!! You have no idea how excited our family is!! We thought is was gonna be longer but nope!!! Now don’t get me wrong things are how I want them to be but we have LOTS of outpatient therapy to cover that. Still gonna be a long road but PRAISE GOD there is a light at the end of the tunnel!!!!
I woke up and looked at the clock. A little after 8am. Thank God I slept in. My husband was amazing and spent the night at the hospital with Zayne so I could play catch up from sleeping on the couch and chair since the ICU. I pushed start on the coffee pot I was able to get ready the night before and opened up the front door of the hotel. I looked out over the pool and let the warm sun sink into my soul. The hospital had drained me. The news had drained me and watching my boy in pain drained me. I started to feel the emotion, I was warring with myself. I struggled going back up to the hospital and yet I struggled not having the energy to be there for my son. I don’t wanna go back. I’m not ready. I wanna bring my boy back here and swim, let him enjoy the Texas sun. I want to go to my in-laws and play at the park. I want to go see my cousin’s new baby and watch the boys play in the yard with their cousins. My plans had been changed so drastically. And thinking of having to go back in to that hospital was almost more than I could handle at that moment. I grabbed a cup of coffee and asked Reba if she could keep an eye on Ayden while I snuck down to the pool. He was still sleeping and I just needed to turn off for a moment. I headed down and found a cozy spot. The sun was hot and I was thankful to feel the beads of sweat start forming on my skin. I loved listening to the birds. Everything I saw as normal became so big to me in this moment. I called my dad. “Dad? I’m so overwhelmed.” I began crying. “I feel like it’s never gonna end. I feel bad he can’t go home. He just keeps crying to go home. He’s so done. And he’s gonna lose it when I tell him we are going to a different hospital. I don’t wanna do this.” It’s never easy for my dad to see or hear his girls cry. As a dad he was built to fix things. Beat up bad guys and make sure we married a man that would protect us the way he does. So this for my dad was as much of a learning curve as it was for me. “I know kiddo, but your almost there.” I took in a big breath “I don’t feel almost there, I feel like we are just beginning and who knows how long we will be on this journey. It seems endless. If it were me that couldn’t walk I would understand what it would take to do the work. He’s 6 Dad. He just wants to play…to ride his new bike….to swim. He doesn’t understand and I don’t know how to help him.” I heard my dads shoulders sink a little. “What can I do for you honey?” I put my head in my hands, “Nothing….nobody can do anything.” “You’ll be ok Jessie, you were made for this. I think you’ll be surprised how hard he does work. I think we all will.” I knew it was killing him that he wasn’t there with me. He had gone home the day before, and it has never been harder to watch my dad leave. He kept asking “Do you want me to stay?” But I knew he was tired, heck we are all tired. And there was nothing else he could do for me here. After hanging up the phone with him, I went inside and called the lady at Mary Free Bed rehab center in Michigan and through talking to her realized we are not allowed to go stay one night with my in-laws before leaving Texas. Or a night at home…we have to go straight from the hospital here to the airport to the rehab center. “Sweetie, if you don’t come straight here the insurance will say you are not an acute enough case for us to take you.” I stood there on the phone. “What if they discharge us Friday?” I asked knowing Mary Free Bed couldn’t get us in til Monday. “Well then you would have to stay in the hospital anyway and then come here. If you go anywhere else we will not be able to accept you. Do you understand?” I had to take a second. After talking with her a little more I hung up the phone and looked at Reba. “When will my second wind kick in again?” I asked feeling defeated and in tears. She looked at me completely understanding where I was at in that exact moment and said “It will Baby, I promise.” After figuring out we had to find flights that would get us there before 4 in Grand Rapids I started to panic again. I didn’t know how we were going to work everything out. Zayne was still having headaches so I was worried about flying, and if we were to ever get them under control without the use of narcotics. I just feel like I don’t know what to expect. It is beyond overwhelming and I see a lot of sleepless nights ahead….and I’m so tired. I’m ready to punch out but then I can’t help but think, I can’t…I’m the mom. I’m not on the outside of this one. My sister got me something before she left. It’s a beautiful decorated board that has the saying “With brave wings, she flies.” I will post a picture later but I’m so happy she got that. It reminds me how strong I am. How strong my wings really are. And how I am transforming everyday. This is a new journey for us but this is the journey God obviously wanted us to take. I got to the hospital a little later and got a phone call from the case worker letting me know she pulled some strings and the rehab center was allowing us to spend the night at a hotel and fly out in the morning. I was elated!! That meant we were able to go back to my in-laws, have a home cooked meal, and sleep in a bed I was used to. I got off the phone and told Reba, the whole feeling in the room changed. We were granted one night of halfway normal before we dove into hard work at rehab. The doctor came in a little bit after that.
He looked over Zayne and said “When do you want to leave?” I was a little taken off guard. “He looks great and he needs to get into rehab. What day would be best for you?” I looked over at Reba…”Um…. Today?” The surgeon grabbed his phone and said “Ok….I’ll make it happen.” After that things started falling into place left and right. My dad called me and said he was working on getting the private jet from his company to fly us home so we wouldn’t have to worry about the airports with Zayne in a wheelchair. I quickly called Jake who was sleeping at the hotel and said “See if you can check out right now and get our money for tonight…they are discharging us today.” I knew I had woken him up when I heard his voice. “Wow…ok..I’ll see what I can do.” I also told him of all the amazing news I had gotten so far. He was as excited as I was. Everything seemed to be running a little more smooth. Then my dad called. “Jessie, I got the jet.” I almost jumped up and down. Talk about a weight lifted from my shoulders!!! For the first time in a while things looked up. Even if it was for 1 day. It was the calm in the storm I needed. And if that wasn’t enough my dad called and said he talked to delta and they were so incredible, they refunded the tickets I bought for the way home AND the hotel let Jake quickly pack up the room so we wouldn’t have to pay for that night. I was beside myself. God was giving me blessings left and right. I called my mother-in-law and told her we were coming home for dinner! Her voice on the other end made it all come together. I could almost feel her through the phone. Our relationship has become so special over the past couple years, and I felt our hearts connect mother to mother knowing how much this night meant to both of us. We hugged the nurses goodbye and everyone was sad to see us go. Zayne, while not in pain, was his entertaining self. We got loaded up into the truck at 5:30pm. Perfect time to sit in traffic for an hour bumper to bumper but I guess God wanted to cut us a break from that as well cause we sailed through and made it in time as if there wasn’t any traffic!! We walked in to her cozy home to the smell of a homecooked meal! It was gonna be a good night.
We woke up early the next morning and I knew it was go time. No more time to wish, hope or long for something different. Time to get to work and for me that meant gearing up for the weeks ahead. Not thinking about going home, not thinking about wishing life was normal. Understanding the job before me. To support my boy. To push my boy. To balance Ayden and regular life…And to give lots of snuggles when I can. We had to be at the private airport at 8:30 that morning. After a crazy morning of getting things around we loaded up and I looked back at the beautiful cozy house I had spent so much time at. My in-laws were moving. I probably wouldn’t come back to this house and I was gonna miss it. It had been a safe haven for so long. The warmth I felt every time visiting. I knew it wasn’t so much the house as it was looking at fingerprints of my in-laws and bumps in the road we moved passed together with every visit with news on Zayne. So many memories.
Heading out I knew I had to pull it together. Make the trip home and get to work. It was weird not having as much family around me. It was just Reba and my little family. I was thankful Reba was coming. I just needed extra support these days. We pulled up to the airport and my chest squeezed tight… then I saw my dad round the corner. He didn’t tell me he was coming and I felt myself breathe! I chastised myself for thinking he wouldn’t fly down with them. He’s my dad…of course he is gonna be here for me as much as he can. He knew I needed him, and when he knows that…NOTHING stops him. We walked out to the plane and my mother-in-law started passing out hugs. She got to me and I squeezed her tight. “Please keep everyone praying for us. We need that. Don’t let them forget us.” I said through tears as I didn’t want to let her go, “We will Jess, I promise we will keep praying.” We both cried and I boarded the plane. I saw her standing there while we flew away. That was a hard moment. On the flight home I got to watch my dad take care of Zayne. Giving him snacks, making sure he was comfortable, putting a blanket on him. It took me back to my childhood. As I sat there knowing the task ahead of me I told myself to soak up this moment. Watching Jake and Ayden laugh together, watching my dad sneak Zayne oreos, and sitting next to Reba, a woman who had walked the same moments I was now walking. The support I felt from all of them without them even realizing was something I will forever cherish.
I heard the nurse walk into our room. It was a little past 3am. I looked over and saw my sister sleeping on the couch. The nurse was grabbing vitals. I was in the bed with Zayne hoping he didn’t wake up. The headaches continued and they were worse than 3 years ago. They came on so quick and were so intense. But if I could keep him sleeping I knew they would stay away for a bit. I tried to get my focus and looked over at Zayne. His eyes were open and he just stared straight ahead. He had been doing this since surgery and I was just waiting for these spells to go away. They are spooky and messed with my mind and my strength. “Zayne.” I rubbed his arm waiting for him to respond. “Zayner..can you look at mom?” He stared straight ahead blinking every so often. “ZAYNE.” I called his name louder. “Buddy answer me.” I held back the tears and told myself to believe he IS ok. I lightly shook his little shoulders, “Zayne…talk to mom.” I said as I snapped my fingers in front of his face. My stomach yelled at me with acid pain. I knew it was nerves. Jamie and I discussed how we had both been living off tums and needed to get more. The nurse was watching me. “Is this not normal for him?” I looked at her through tears that I REFUSED to let fall and shook my head no. “Ok…I don’t feel comfortable about that. I’m gonna call the neuro on call and get them to take a look.” The on call doctor came in by the time it was over and gave him the green light. In the ICU he was doing it and they ordered an emergency CT and EEG. Everything came back normal. I was glad it did but it left lots of questions in our minds. In all the ruckus my sister woke up and was watching everything that happened. I looked over at her and when our eyes met the fear was real. And the fear was strong. I tried to refocus. Tried to close my eyes and not think about anything. We fell back asleep for a little while. I woke up to the nurse again but this time it was light out. I looked over and saw the couch empty. “Do you know where my sister went?” She looked at me and said “Yea she told me to let you know she was getting some tums from the pharmacy.” I looked over at my sleeping boy and carefully tried to crawl out of bed without waking him. It was a rough night. To many scary thoughts to think about. I could my mind on the verge of something I’d never felt before. I was starting to relate with people who just lose it. Lose their mind for a little bit. It’s like you are watching your insanity walk away from you and darkness wraps around you making you think there is no hope in the peace you seek. My stomach was shooting with pain. The pain started the first night after surgery and my mom was staying the night with me making me drink lots of fluids and putting a cold cloth on my head. I loved the way she was taking care of me and just wished I could take care of my boy the same. Reba walked through the door with Jake. It was so refreshing seeing family. Fresh from rest, ready to battle with me. However, Reba’s face told me different and I immediately thought of my sister. “Where’s Jamie?” I asked her quietly. She wasn’t supposed to say but knew I needed to know. I saw her struggle. “What is going on? Tell me.” She told me to go out in to the lobby and prepared me that she was in rough shape. Jake and I walked out while Reba sat with our sleeping Zayne. I felt as though with every step I took my anger became greater. Jamie and I have a way of pulling each other out of the trenches and if I would have gotten to her sooner she probably wouldn’t be as bad as they described. We walked out the double doors and saw my mom. I approached with a wave of anger. “Where is she? And don’t lie to me.” My moms face was so strong, yet so sad. She was amazing actually. She has seen me in so many colors and has always loved me through all of them. And this time was no different. “Where is she?” She put her hand on my arm and said “she doesn’t want you to see her like this. So be sensitive.” I pressed my lips together firmly while thinking of what I was going to DO to my sister when I saw her. “I’ll be nice mom…don’t worry. Just let me talk to her, I can fix her.” Mom pointed to a hallway and Jake and I walked over to it. Jamie was on the floor leaning her head back against the wall, almost trying to calm her breathing down. She looked like hell. I felt awful. I ran over to her wrapped her in a hug. “You’re not supposed to be here, you’re not supposed to see me like this.” Hearing what she was saying let me know my sister was still in there and the anger came back. I pulled away from her and said very abrasively “JAMIE, get up. Get up now. GET UP.” I said as I pulled her away from the wall. “Listen to me, you better snap out of this, so help me…” I could feel sisterly love coming out. “I can’t, I’m sorry I’m not here for you, I’m sorry.” I breathed quicker trying to get her up with Jakes help. “You’re gonna be sorry.” She was barley opening her eyes. “Don’t be mad Jessie, You can’t be mad at me.” She was like a pile of goo. When I couldn’t get her up I pushed her shoulder against the wall and lack of control I had was fueling me anger. Jake held one side of her and was talking so sweetly. “She’s not mad at you, your ok Jamie. Your ok.” As he gave me a look that told me to get a hold of myself. I ignored his warnings and looked straight at her. “JAMIE…” I tried making her look at me and then I got the notion that maybe with one good pop across the face might bring her back to reality. I pulled my hand back as I said her name again. “JESS!” Jake looked at me and grabbed my hand. “What? She’ll live.” My husband was rolling his eyes as he pulled her to her feet. “Ugh…” I growled thinking if everyone just let me deal with her she would be fine. We walked her down the hallway to a room with a bed for people needing to get good sleep at the hospital. He sat her down gently on the bed and I, not so gently, took off her shoes. I began stuffing her pillow into a fresh pillow case. She sat there watching me as if she was drugged. “You’re mad.” I huffed “Of course I’m mad. Now shut your trap and get in bed and DO NOT get out of bed until I tell you to. Do you understand what I’m saying to you?” She looked at me and then looked over at mom. “Mom….she’s so mean.” She whispered as if I couldn’t hear her. I rolled my eyes, looked at mom and said “Do you have this?” Mom so patiently looked at me and smiled to sweetly knowing the relationship Jamie and I have. “Yes honey, I got this. I won’t leave until she’s sleeping.” She winked at me and I hugged her. “Thanks Mom.” I don’t know if she felt everything I meant in those 2 words but it felt good saying it. Jake and I went down to the cafeteria. He was so confused as to why Jamie was a mess and I began telling him of the spells Zayne had throughout the night. His face showed lines of worry. We saw Dad at the cafeteria as well. I couldn’t really eat anything so I told Jake I was gonna go outside for some fresh air. So he stayed with my dad. As I walked out of the hospital doors into the hot Texas sunshine I felt everything from the night, everything from my sister, and everything …EVERYTHING I had to carry with my son, and I broke. I hit the ground sobbing. And began talking to God like I do. You told me you would be here. SHOW UP. I can’t do this on my own. I’m gonna lose it, I’m gonna lose it. I feel like there aren’t enough of us, I need help, I need support. Don’t take my son away. We made a deal before surgery, if he wasn’t going to be Zayne inside there then just take, if this is who he is now….if things are just going to go downhill….Don’t take my son away. Please. Please…..I don’t know what to say….I don’t know how his story plays out but I’ll handle anything I have to as long as he is still my Zayne. My fun, spirited, sweet, loving little boy. Please….Please. The song ‘Angel Armies’ Popped in my head. And I immediately realized it was Sunday. My whole church was gathered together. My body got chills as I began calling all of my friends…no one picked up but Fran called me back within seconds. I picked up my phone “Fran….Fran…” “Yes I’m here.” I was crying so hard people walked by staring at me. “Are you still at church?” I held my breath hoping she would say what I wanted to hear. “Yes” My heart got a zing. “Please, Please go to Pastor Shane, stop the service and pray for my son right now. We need prayer right now, right now….Please Fran Please… “ I was sobbing at this point but still drawing so much strength from the fact that I got through to someone. It was like in a movie that seemed hopeless and then a second, fresh army shows up for battle in the time that the good guys were about to lose. And with that army comes a new wind of hope. Hope that we will prevail. “Yes….YES I WILL!” If I know anything about Fran it’s that she is not afraid to make a scene and interrupt legalities when God moves. I know my message was in good hands. And I could almost feel my sanity come back. I texted some other family members as well. Some in Texas, Ohio, Tennessee and all over Michigan. After about 5 min I received texts from my friends at my church with picture of the whole congregation up at the front for my boy. I felt breath come into my lungs knowing he was so covered. Toward the end of the hour I heard that over 15 churches stopped service and raised my boy up. Tears fell from my face at that act of GOD. I needed it and drew so much strength. I could feel everyone standing in the gap for my family. We were to tired to fight….but when we realized we didn’t fight alone…we got our second wind. And that was the beginning of good days ahead.
(We have a couple more blogs of flashback to get caught up on. Zaynes Rehab updates and videos will be posted Saturday. Hang tight, he is doing good, improving every day. Keep the prayers coming. Thanks so much for all your support)
We left the ICU and as we headed to the other wing of the floor, I couldn’t help but feel my heart sink as we passed the room we were in just a year and a half ago, the very room my Jess and I wrote the magical blog of our great news! That was when the doctor was surprised at how much of that tumor he removed. I can still hear his words echo through the halls. “I may not see you guys for many years if ever again, this is exciting.” The memory, so vivid, had a sting to it as I rounded the corner to the room Zayne was in this time.
Take a breath Jamie. Stay present. We will get through this too. I shoved back the tears, lifted my chin, and went to see the boy. I did not have time for disappointment or the exhaustion that kept knocking at my door.
That night, when Zayne fell asleep, my sister and I sat in our jammies, on the little couch in the room giggling with each other, grasping a moment that felt normal. Sure we shoulda been sleeping. But both our nerves were shot. One of our giggles must have woke the kid, because his cute little troll voice, with a lisp, said, “Mom, I am so thirsty.” Jess, grabbed the water and made small talk with Zayne. And after about 15 minutes Zayne slipped into one of his Zone out moments. He had been doing this since ICU and it was a bit concerning because no one could seem to explain it. He would just stare at you.
“Zayne, Zayne.” Jess said with a snap of her fingers trying to get a response. And then moments later he would come back. His nurse couldn’t explain it, so she called for a neuro consult. It was quite unnerving when no one could say…”Oh yeah, this happens after brain surgery, or yes this is a side effect of morphine.” Time passed, neuro came in and said he looked good at the moment, but they would run further tests tomorrow. He attributed it to Zayne’s lack of sleep.
Finally, Jess and I drifted off and gained a couple hours of rest, I awoke to the snap of Jess’ fingers. “Zayne, Zayne. Honey why aren’t you answering me?” I sat up, my stomach churned, there weren’t enough Tums in the hospital to settle my stomach these days. I told jess I was headed to find more tums, and I left the room. I could feel my walls caving in. Stay strong Jamie. I pleaded with myself. Your sister doesn’t need to hold you up, you have to hold her up. Over the years, my sister and I have taken turns holding the other up. When I crumbled during my parents divorce, she was right by me. And I had managed to be kick butt strong for the past 3 years with Zaynes health, so seriously, Jamie, get it together! I scolded myself once more. As I walked by the nurses station with tears rolling down my face I could feel fear rush in like a gust of wind just came busting through the hall way doors. It swirled like a tornado around my body. I was sure the hallway was shrinking. “Are you ok.” Said a voice seeming so in the distance. “I’m not cut out for this, I’m not cut out for this.” I muttered. My back it the wall and to the floor I slid. In a heap I just cried. The fear was so strong it took my breath away and insanity was seeping in through the crevasses of my weakness. For a moment, I really thought they might take me to psych. It wasn’t pretty.
The nurses escorted me to a little room with a couch. “Please don’t tell my sister, I don’t want her to worry. Just tell her I went downstairs for Tums.” I pleaded with the nurse. She assured me she wouldn’t tell, and that she just checked on her and both of them fell back to sleep. I called Michael, never mind it was 4:30 in the morning. I cried and I talked, and cried some more. “I can feel the crazy coming babe. I feel so weak this time.” He settled me down, like he always does, he is my rock, and after I hung up from him I pulled up my playlist and played a few songs. It was in this moment, I asked my angel to show up,(in a previous blog). Once I calmed I went back to the room to sleep. I selected a song on my playlist, and “Not over yet” by king and country began to play. That’s weird I thought. That wasn’t what I chose. As I looked at my playlist to see if “not over yet” was above or below the song I chose, and it was nowhere near it, it wasn’t even on the screen, available for me to bump. I smiled and knew God was sending me encouragement.
After just nodding off, I awoke to the sound of Jess snapping her fingers again. “Zayne, Zayne. Answer me honey. Are you in pain? Do you need a drink? ZAYNE! Answer me”.She said with volume and urgency. And just like that, my calm had vanished, a CRAZY came with a VENGENCE.
I headed down the halls to the double doors, hoping my mom and Reba would be here soon. As the double doors at the end of the hall opened I saw them checking in at the waiting room desk. It was all I could do to make it the last 10 steps, and in the floor I went. Reba just laid her whole body over me as I sobbed. Her tight hold was calming, but I couldn’t stop uttering, I am so weak. I am so weak. I am just so weak. I don’t know if I can carry this. In that moment, my mustard seed was gone. As a kid, I used to cry and hang my head over a trash can nauseous, because Jess screamed whenever we got our shots. Seriously, at 6 I could not handle watching her in pain. My fears had begun racing into the future. I kept seeing Zayne in a bed, just staring at us. No giggles, no hugs, nothing! And as the fear raged, reality kept dimming. In that moment my strength was gone, and I felt weak.
Day 2 of Brain surgery.
He slept most of the night, my sister and I on the other hand not so much. The nurse came in every hour on the dot. I wasn’t looking forward to the morning knowing Zayne couldn’t eat anything until after his MRI. He quit eating Wednesday at 9pm. So the next morning was Friday. He didn’t wake up enough to eat anything but a couple bites of pudding the day of surgery, so now going another 12 hours plus some was going to be brutal. His MRI was scheduled for 10:30am. I was really bummed it wasn’t 7am. That would have been difficult already but to bypass breakfast almost into lunch was gonna be a task. He woke up around 7:30 and said he was hungry. I told him we had to wait until after the pictures of his brain before he could eat. He didn’t put up too much of a fuss and quickly went back to sleep. I was thankful. After the disheartening news yesterday I didn’t have much in me to tell this kid no. 10:30 came and went. Around 11am I went out and asked the nurse when they were going to come and get him. She said she already called and they were running a little behind. My stomach turned and I walked quietly back into the room hoping not to wake him. If he slept til they came to get him it would be ok. He was going on 38 hours with no food. And my son…..doesn’t do no food well. I looked over at my husband with a worried look and told him the news. Zayne started to stir. “Mom….” He said already looking very uncomfortable. “Yea baby?” I went to his side and rubbed his arm. Not being able to use the left side of his face well it came out so mumbled I couldn’t make it out. “What baby?” His eyebrows came together as if he was in pain. I felt I couldn’t read him well. The last brain surgery went so unbelievably well I was almost off my game trying to know what he needed. “Mints please.” My heart twisted with pain. He wanted his junior mints his GG had gotten him. He was hungry. I spoke in the softest voice I had, “Just a little longer and they will come get you for your pictures sweetie. And then you can eat whatever you want!!” He pulled his right arm out of the covers and in the most pitiful gesture held out his hand in front of him. His eyes were still closed and he said almost in tears “Mints please…..mints mom?” I started crying knowing how hungry he was and just wanting to be able to take the pain away. I can’t imagine how his stomach felt. All the pain meds with no eating. It had to be awful. He started to cry. It was not a mad cry. He was hurting. I just didn’t know if his stomach was burning or if he needed pain meds for his head. The feeling inside me made me sick. I couldn’t do a damn thing for my boy who just had his head cut open. He is so little. And I couldn’t even comfort him. I looked up at the clock…12:45pm. I went back out to the nurse’s station while wiping my tears away. “He’s miserable. I don’t understand what’s taking so long. We had a slot at 10:30… it’s almost 1. He’s 6. He hasn’t eaten since Wednesday night. I’m gonna email Dr. Sandberg and tell him if they don’t get us in, in an hour I’m feeding him.” The nurse kinda looked at me oddly. “Let me go get the charge…hold on.” I didn’t know what she meant by that but I waited. A lady came out who I assumed was over all the nurses. I told her my problem through tears. I knew Zayne was in the room crying and in pain. She called down to MRI and I stood there and listened to the conversation. She was as mad as I was. I gathered through the conversation that they thought he was an add in, meaning he wasn’t really on the schedule. “Do you realize he is a little boy? He is 6 years old. I know that would be hard for an adult let alone a child.” She was not happy. She hung up the phone. “You email the surgeon, maybe he can get something done faster.” I nodded my head and asked everyone to stay out of our room so he would hopefully go back to sleep until they came. I walked back into the room to Zayne screaming. I couldn’t breathe. My husband was almost to a breaking point. “Baby, baby…” I rushed over to Zayne’s side. “It’s ok sweetie. I’m right here kiddo. It’s ok.” He rolled back and forth…”MOM…my stomach…..my stomach…” he screamed. I wracked my brain for how to hold onto my sanity in this moment. Did he need pain meds or would that make it worse? Is it really his stomach or is his head hurting? Zayne has had cronic headaches for 3 years now. He has done a good job of teaching himself coping mechanisms. Food being one of them. If he says he is hungry after a meal I know a headache is on the way. But this time it could be absolutely legit. He’s starving. As a mom I found myself not knowing what my son needed. And as a parent that is the ultimate torture. Especially when there is screaming and crying. I found myself trying to zone out. Trying to just sit and be there but not so much that I lose my mind not knowing how to help my boy. After 30 min. of screaming how hungry he was and tossing in the bed he drifting off to sleep. I sat there looking at him. My emotions that had been behind a wall for the past half hour came out. I put my head between my knees and cried. I felt as though I was gonna have my own heart problems if I didn’t find an outlet. My body shook with each sob I tried to keep quiet. He lay there sleeping but his expression still one of that in pain. I reached out and softly touched his hand. God….help me. I can’t do this. I can’t watch this. Nothing about this surgery has been ok. Help me. I need to be here for him. I can’t go down. You HAVE to help me. My plea’s turned into demands. You said you would be here. You told me this was the way to go. That we were supposed to be in Texas. Now my boy can’t move his body. Father….PLEASE. The pain has to stop. I need to breathe. You can take this away. I know you can. DO IT. DO IT DAMN IT. He’s so young…Be who you told me you would be.
The nurse opened the door and I quickly ran over to her and shuffled her out the door. “I will talk to you out here. What is going on?” She looked at me sympathetically and said “The surgeon is on the phone for you.” I walked over and picked up the receiver. “This is Jessica” “Jessica it’s Dr. Sandberg, I’m so sorry he hasn’t been taken down to MRI yet. I’m very disappointed and have been calling regularly. I will call again, but please do not feed him. I know you want to and as a mother you just want to fix things. But we need to see how his brain is and make sure there is no swelling. This needs to be done. Do you understand what I’m saying?” I started to cry again. “I understand but then they need to get this done. I can’t do this anymore. This is not ok.” I held the phone tightly to my ear trying to control my emotion. “I know, I know, I’m so sorry. I’m going to call again.” I got off the phone and turned toward the nurse. “Who do I need to talk to, this is ridiculous.” Moments later I was talking to a social worker and she was handing me a card to contact someone in patient advocate. I held onto the card as I told her of my story. After a couple minutes I went back into the room to see Zayne stirring. It was going on 2pm. The anger that wrapped around me seemed to be almost materializing. I felt my muscles tense and my lips become tight. “MOM…” I felt like a different person walking to his bedside. One with vengeance. “I’m right here bud.” He tossed and turned and began screaming of his stomach again. To sit here and write about the next half hour would not only be brutal on you but me as well. Even trying to go back to that day now makes me sick to my stomach. 30 minutes passed and he finally drifted off again. I simply sat there feeling hot angry tears roll down my face. My stomach felt like a rock. I got out of my chair once more. I walked toward the door fearing what was going to come out my mouth. As I put my hand on the door to step out to the nurses station I almost felt bad for the person who was to get my wrath. I stepped outside breathing hard. I saw a girl walk by in a tech uniform, she looked at me and said “I’m here to take Zayne down to MRI.” My anger disappeared so fast I almost dropped to my knees. I exhaled as I pulled her in for a hug. “Oh my goodness, you ok Ma’am?” I pulled back and smiled at her. “We’ve been waiting for so long….yes let’s get him” She was a mother as well and as I told her my story she became more determined to get him down there as soon as possible. She was supposed to wait for another tech to come help and decided the poor boy had waited long enough. As we wheeled his bed out of his room I grabbed his hand and walked beside him. “We are going to get your pictures baby!” I said through happy tears. I looked up at the clock it was going on 3pm. Jake and I walked with him down to the MRI room. Through talking to the nurse they weren’t even aware he was an ICU patient. They weren’t told his age. Someone dropped the ball. I couldn’t take anymore. I looked at my husband and we agreed Jake would be the one to be with him while they put him to sleep. Only 1 parent could take him back. I kissed his forehead and looked in his eyes. “I love you baby, I will have a chocolate pudding waiting for you when you get out. Ok?” He nodded his head and looked off into space. I leaned closer to his ear, tears rolled down my nose. “I’m so sorry baby, I’m so sorry.” I looked at my husband. The look that we exchanged was so short but meant so much. My look said Are you sure you’re ok? I can stay. And his face said I’m nervous but I got this, go take some time. I winked at him with tears in my eyes and walked out.
“Surgery went well. He is in the recovery room now, so you guys can head up and I’ll meet you in there.” The surgeon smiled at us. Jake and I took a breath for the first time in 7 hours. We looked at each other with tears in our eyes. He was ok. It felt good knowing this brain surgery went as well as the last. We walked into the room and saw him hooked up to every machine imaginable. He was still sleeping. After a couple hours he was still asleep and hadn’t woken up yet. I started to get a little concerned. His last brain surgery he woke up as soon as we said his name. This time no one could. The surgeon came in and tried waking him up. Roughly….a little too rough for me. He ended up pinching his shoulder in the muscle. Finally Zayne’s face winced in pain and he started crying. I relaxed just a little finally knowing he was ABLE to be woken up. “He wasn’t moving his left side in surgery so I just want to check a couple things.” He asked Zayne to move his left leg. Zayne fell back asleep. The surgeon woke him up again and asked very loudly for Zayne to move his limbs. His right leg wiggled. “Move this leg Zayne.” As he tapped his left leg. My stomach turned. Nothing. He ran his fingers up and down the bottom of his foot. I felt my pulse rise and the sweat bead on my back. Nothing. He became more aggressive and pinched some pressure point in hopes to get some reaction. Zayne’s foot moved ever so slightly. The surgeon seemed relieved. Jake and I on the other hand became more concerned. His left arm on did nothing. The doctor decided to try again when he woke up a little more. Zayne never really woke up anymore. He slept for so long. Long enough to allow my thoughts to run. Before the surgery I had a vision. One of those you have when you’re not sleeping but not awake. I saw myself leaning over Zayne’s bed holding his left hand asking it to move, asking him to wake up. Begging God to give me my son back if he was to be himself and struggling to let him go if God had other plans. The war inside me was so strong in the vision. I began singing over him as tears flowed down my cheeks. I held his fingers to my lips and prayed to God that my kisses would heal. What if he doesn’t wake up? What if they hit something in his brain and he doesn’t have his fun, loving personality anymore? What if he can’t walk? What if…… the list went on and on in my head. I tried to be strong and brave while feeling these feelings. I had to know that God had a plan. I had to believe. I had to CHOOSE to believe. I didn’t know how long it would be until I felt peace but pleaded with God that it wouldn’t be too long.
Ok, I am going to be pretty brief. I just can’t seem to catch up with life enough to sit down.
This surgery has been a challenge. There was some damage in working to get the cyst under control. This caused him paralysis to his left leg and left arm, and on the left side of his face. We had a scare on Sunday, he seemed to go into these non responsive modes and Sunday’s lasted so long it was scary. We think it was due to pain. They had a hard time getting that under control, and since Zayne is used to chronic headaches he has developed a pretty good tuning out skill to manage. Once they got pain under control, it seemed to help. They are still working to manage the pain. He is on a hefty pain pill still…so please pray that that pain subsides.
On to the good news. The boy stood on his own 2 feet today and balanced by himself. This is HUGE!!! He was also able to take 5 steps just holding on to the Dr. hands(until now we have had to support his weight for him.) And along with that there was a sighting of left arm movement…which is a first sense surgery.
They have now checked out of the hospital and head to the rehab center tomorrow where he will stay. We aren’t sure of a time line. I have heard anywhere from 2 to 6 months. It is going to be tough and I wish they didn’t have to go through all this, but I am grateful that walking is still an option for this little guy.
Thank you all so much for your support!!! YOU HAVE KNOW IDEA. We could feel your prayers. I do apologize for our lack of updates. We really want to keep you informed, you have been so good to us. But this experience turned into just putting one foot in front of the other hanging on to any thread of our faith and quite honestly…our sanity…. And I am not kidding. Toughest thing we have every been through.
Jess and I have so much more to say, but life doesn’t give us a moment these days. We wanted to at least get everyone updated on what has been happening in this whirlwind.
So it seems these past 24 hours I have been working to grasp my mustard seed of faith, only to wonder if it’s even that big. It seems in a moment the clamor of fear in my brain literally incapacitates me dropping me to my knees. Then I hear a voice “Peter, step out of the boat. Step out of the boat and walk on the water with me Peter.” In the darkness of my mind I search for this Peter that this steady and assuring voice has called to.
I recognized that voice, I knew it was God calling for him. And then I realized…. He was calling for me. I was who he was calling to. My faith was diminishing by the second so I called out. “Send me my angel…. I want to see him.” I demanded in desperation. The with fear was seeping into every crevice it could find. Moments later my angel was sitting next to me. Only, his image wasn’t strong… He almost seemed faded. Through angry tears I said. “Why aren’t you really here? I can barely see you!” And he responded so calmly. “It’s you, not me. It’s your perspective, because I AM right here.” He went on to say, “It is ok, your human perspective is clouding things a bit right now. Let go of fear and expectation. You will see me. You know you will.”
For a moment I believed him. The moment lasted just long enough to throw me what didn’t feel like rope, but like a string. I now can literally relate to hanging on by a thread. I grip the thread tight. Deep inside I do believe I can walk on water and even in my doubt when I begin to sink… I hold on to the thread of faith I have that says, He won’t let me drown.
Well, once again, this night before surgery we rally the troops.
You all have supported us from the very beginning(Um.. he has a what?). As always our words can never express the way we truly feel about all the support. It may not make sense, but we feel your hearts and there is strength out pouring from so many.
As we near tomorrow we a rally the troops, and as with any rally before a big battle, we need a unified battle cry. And as Jess and I sit together pondering what to say tonight, we feel the cry is “We believe!” Believe in what , you may ask… and to that we say “Yes”. We believe in hope, we believe in peace, we believe in love, and we believe in God and his ultimate plan. We believe in a power within each and every one of us to do great things, greater than we ever thought possible. To shine in a weary land. To bring life and peace to every corner. We believe the battles we face are about much more than strengthening our faith in God, but about him revealing to us who we are truly and meant to be. We will transform. Like the Phoenix out of the ashes we will rise. We don’t care what things look like, and our own expectations of outcomes aside, victory DOES course through our VEINS. We may stumble, we may fall, our faith be shaken to it’s very core and weakness may suffocate us for but a moment. I can declare this for sure, come hell or high water we know who goes before us and who is behind us. And no matter the outcome, we will rise. We understand the fight we fight. WE see the risks; however we also understand that these battle lines surge beyond this surgery we face tomorrow. WE reach deep into our core, to the very depth of our soul. And there, burning with just the slightest glow, at the very center of our hearts, is our true identity. And like a Trust fall from terrifying heights, we choose to believe and take hold of our true identity, glowing like an ember, just waiting for our very breath to bring it to flames. With every breath we transform. We have called out angels, and this is not a fight we fight with fists, but a fight where we draw on the power of our hearts and the very wings on our backs, that our angels have given us to take flight. We will soar. Soar with power, and peace. Soar with determination and strength and an even greater knowing of who we truly are. And that is what We Believe.
I know we all have different understandings and beliefs, and that ok. We all have a piece to the puzzle. So when you ask us, “What specifically are we believing for THIS battle?”… we say “yes”. So tomorrow reach to the very depths of your own soul. Allow your own empowering beliefs to connect all our hearts together and we will rise.
Below is a song by Katty Parry that has fueled both Jess and my hearts this past month. It will be one of the songs on our playlist for tomorrow.
And then if you scroll further I have a couple more videos…a couple of Zayne singing…love it.
“Mom.” I heard Kate’s voice and immediately I knew why she was calling. “Are you coming to get me?”
In my rush to get Bo to his scrimmage in Eaton Rapids, I forgot to pick her up when I dropped off Josh and Timmy to their practices at the school tonight. And I thought I was on top of things because I actually had dinner done before 5pm tonight. I sunk in my chair at Bo’s scrimmage and wondered to myself how I was going to pull off the next 2 weeks. My college classes were starting(yeah, a story for another blog), my coaching was going well, brain surgery is scheduled for next week, and oh yeah, I have FOUR kids who apparently have places to go and people to see.
Last brain surgery I felt so strong for Jess. If I even heard her voice over my phone, “hey Jame…”, I was already in my car on my way. These days I find myself staring at all the plates I have spinning in the air and I can’t help wonder which will come crashing down first, apparently it was the “pick your daughter up from practice plate.” But which one would be next.
And then I go and do the unthinkable… read my sisters blog post. Why would I do that to myself.
So I take tonight to fall apart, I take tonight to wonder, “Will I be able to be enough for her this time around?” “Will my kids know that despite how many times they are left at the school, they are a priority?” “Will my kids understand that my lack of patience with them this week is due to the pressure on my shoulders right now, but that I love them more than the very air I breathe?”
I take this moment to feel weak, and tired and quite honestly a bit like a whiner. I take this moment, in this lull before battle to cry and ask why. I take this moment to challenge my faith, really put it to the test so that when tomorrow comes it’s stronger. Tonight I cry, but when tomorrow comes I will lift my eyes to the sun, spread my wings and allow my creator to fill me with his strength and peace, for in a few days we will go to battle with the angles by our sides and I will stand by her. No matter what… because that is what we do.
Throughout our lives my sister and I have taken turns standing and strengthening the other. And although I feel weak tonight, I accept that, because I know it will be just for a moment.