Elijah's story continued

After they rushed Elijah down to the NICU, I thought the hard part was over. I naively thought that if he had lung function, then all we had to do was get him to that kidney transplant. Simple right? Enter in the kidney specialist. The thing about a specialist, is they have to be nothing but confident in order to do what they do. When we met Eli's Nephrologist he intimidated me. Actually, that's an understatement. I am not the type of woman to be submissive, I say what is on my mind, I usually didn't back down. I've always been one of the smallest people in my classes, so I had to really learn to stand up for myself. Here was this man who was the only one in our area that could help him (and the best in the US, if not half the world) and he was missing a sensitivity chip. He was straight to the point and really didn't care what we thought. I remember one night they had us rush down to the hospital as he had a potassium spike. They weren't sure if he'd make it through the night, and the doctor actually had to nerve to ask me why I was crying (this and many other comments). Looking back, I know it is what they have to do to get the job done, but at the time it was devastating. He came up with his crew and asked us if we really wanted to put Eli through all of this. We had long since made up our mind, but when put on the spot, I started to doubt if we were making the right decision. He told us upfront, that is life would be painful, and this was devastating to hear. One of the options was to take him home with us to die peacefully. Being that there was no kidneys, his electrolytes would go AWOL and he would have potassium spike that would stop his heart, but he'd go peacefully. He could live a day or maybe a week, but it wouldn't be long. Or we could go along as planned, and have him go into surgery for peritoneal dialysis and a broviac line, everyday would probably be painful. Seth asked him what he'd do if it was his child, he matter of factly said "I'd never put my kid through that." We had prayed for so long and Eli had survived every infusion, we felt that it was G-d's plan to have Eli write a new page in the medical books, and already he had. Maybe it was selfish of me, that I put my own want ahead of his pain, but I couldn't let him go. With joyful, scared, and heavy hearts, we proceeded. I could go into every detail, but I 'd be writing forever, so I am going to try and cover the big stuff. To our amazement, he survived the surgery, we cried the whole time he was in surgery. Our love for him was beyond anything I could explain. We had a friend of ours who was a huge prayer warrior, she said, "I feel that G-d is telling us to watch, pray, believe, and be amazed." From then on, that became our family motto. Eli had so many ups and downs, days and nights that we didn't know if he'd make it. It was a struggle to balance his electrolytes and my worst fear was a potassium spike. So every blood test, I'd wait with huge eagerness, and we'd cheer with great results and cry when not. All the while Eli was charming everyone around him (unlike his mother) he was a joy to be around. There was something so peaceful about him, even when he cried and was in pain, he just.... well... We got to hold him for mere seconds before he went up for his surgery, it was the only time until 28 days later. Yes, almost a whole month of seeing my son and not being able to hold him was agonizing. He also couldn't eat, I still have nightmares. He was so hungry, but we had to wait for his site to heal, or else it wouldn't work. I am sure I am leaving huge chunks out, but that was so hard. He could smell me, as I was pumping, hoping to one day be able to feed him. Pumping was so depressing. It took so much time, but it was so mechanical sitting in the room while you heard other mothers crying, along with myself, that their child was ill. He ended up with one feeding of my milk and the rest of more than a freezer full got thrown out. Every moment was a "wait and see," he had a hard time healing and so things were never simple. Still every moment that we could, we were by his side. We lived and breathed him. The only time we went home was to sleep and that was because we weren't allowed to stay. I had a c-section, so it was incredibly painful, but I refused pain meds because I was afraid I'd fall asleep and I wanted to be with him. Seth and Eli, oh boy, those two were peas in a pod. I had never seen such a proud papa. Seth exceeded all my expectations of a father. The two were inseparable . I still get choked up thinking about them. I drove the staff nuts, as I wanted everything to be perfect for him. I wanted answers for everything, and I didn't want to miss a thing. Eli loved music, especially John Denver. So people sent us Cd's and Seth's parents got him a CD player so he could listen all the time. Our favorite's for him were "Annie's Song" and "Sunshine." Oh boy, there is so much to cover and I am having trouble breaking his life down into one page. Eli almost died many times, yet somehow, he'd always pull through. One time, I was sitting with him when they came in with a crash cart. His levels were so far off that they didn't know if they could balance them quickly enough. We just prayed and prayed. We had bible verses taped up to his bed as we wanted him to be literally surrounded by G-d's words. I never knew G-d in the way that I did when Eli was alive. It was the first time, I truly felt a love and longing for Him in every way. I remember parents coming and going with babies smaller than Eli, and I so wanted to take him home. Some were baffled as to why he was there, as he looked like a normal sized baby. Eli was soon known all over the hospital, as he was doing amazingly well. He had to over come another big surgery. I remember walking him down the hall and trying to soak him in. We didn't know if he was strong enough to make it. A nurse said "he doesn't belong to you, he belongs to G-d." I sobbed and another nurse whispered in my ear "that doesn't help right now, does it?" I just shook my head and fell into a heap on the floor. There is so much I want to say about his life, but I just can't capture how unique his life and personality really was. We ended up getting moved up to pediatrics, which was huge. They began to teach us how to do dialysis at home. It was like a condensed medical school. We had to balance the dextrose with his blood pressure, give him shots, and so much more. At first it was so intimidating, but before we knew it, it became our new normal. We had to change his tubing (which is highly susceptible for infection) with utmost care. Seth and I pretty much moved into the tiny room with him, and there was no place we'd rather be. G-d provided in great abundance. People brought us meals every day, thanks to our wonderful church "Mars Hill." People brought money, so Seth could be with us as every day was unknown. I had never seen such great kindness. I don't remember wanting for anything, it was always just there. Our faith in G-d grew everyday, and it grew in the love that kind people really did exist. I had never known compassion like that before. The staff around us became our family, and there were so many amazing people involved, I still think about them and miss them to this day. They cried and rejoiced with us every step of the way. Eli was a joy. He had these big ole blue eyes that could melt your heart. He was almost always dressed in a Carter's sleeper. He was our "Sunshine." We sang, talked, hugged, and loved every moment. Seth and I became one person, our relationship flourished when most would've been shattered. We'd sleep in a single chair that folded down together, every night like two little sardines. Isaiah loved his mobile and little puppet shows, but mainly just being held. Against all odds, we got to bring him home for a visit. I remember laying him in his crib, thinking it was all a dream. Oh and my boy had his Daddy's dimples. One on each cheek and so deep, he looked like a Cabbage Patch Kid. We playfully had many nick names, Punky Pants, Mr. Buddy Buddy Pants (apparently we had a pants obsession), bright eyes, Mr. Magoo, Squeaker Peeker, and more. The sun rose and set in his eyes. We eventually got him home full time and got some home nursing care as it was quite time consuming. He ended up contracting peritonitis, which is horribly painful and we had to go back to the hospital. Things started to spiral out of control after that. There's more to it, but he ended up eventually having to go to the PICU on the CRRT machine where they had to paralyze him. They said he would not make it. At one point, well, that's to hard for me to talk about. Seth and I stayed by his side. It was agonizing, as he had so many lines in every limb of his body. He almost seemed lifeless. I had a man come up and pray with us. He told me, like Abraham, that I needed to sacrifice my son (not kill him, but give him over to G-d) and let G-d take over. Reluctantly, we did. Thankfully G-d would give us more time, as he survived. They took him off the vent. and warned us he might not be able to see as he had had a major stroke. They took it off and he looked at us, smiled and then cooed. I sobbed in delight. He miraculously beat the odds. After a lengthily stay in the PICU and then Peds we went home. He now was on hemo dialysis. I am trying to shorten this and it's killing me as I have so much to say and I hate to trivialize all that he endured. Eli came home and was in major withdrawal from the medications. He cried all the time and wasn't his self. I called and called and the staff assured me he was probably teething, but I didn't believe them. Things got worse from then on. Seth and I lost our nursing and really needed help as we were so tired, but things just weren't happening the way we'd hoped. Eli went from being this passive baby, to non-stop screaming and I was beginning to break down. Wed. April 13Th, he was approved for his kidney transplant. The doctor's were pleased with him and I think they too, love him. I can't talk about that night, but in the morning we found him to have a fever of 107.5. We had to call 911 as he lost consciousness, and Seth began to do CPR on him in the back of the car as we awaited the ambulance. I just screamed and cried for help from the 911 operator. I still relive this many a night. My boy, my beautiful perfect amazing little boy died on April 14Th, and my heart did too. His body had had enough and it was time for him to go home. I could go on about every detail as many of you know. I am not one of those people that suppresses the memory as I his mother and always will be. I know that I will see my children one day in Heaven, and I don't pretend to be okay with them dying. I have had a lot of criticism for the way I have handled my grief, but they haven't walked in my shoes, so I don't listen anymore. We were able to bury Eli in a mausoleum with money that had been saved for his transplant. Aurora's ashes are in his arms and they are together. I have to say, throughout all the pain and sorrow, their lives have brought us to G-d and for that I am thankful. Even though I am separated bodily from them now, it is only but a blink of an eye that I will be in eternity, never to shed a tear again. I am the mother of 6 children. Even though it makes some people uncomfortable, this is our reality. Even though I am separated bodily from them now, it'll only be but a blink of an eye that we will be in eternity together, never to shed a tear again. I am the mother of 6 children. Even though it makes some people uncomfortable, this is our reality. I am proud of my kids, and that will never change. On their grave stone it says:
I am spent. There is so much more details I want to share, but I shall save that in future writings as they are still apart of our family. Words can't capture the joy they brought to our lives. People may associate the death's our our children as something negative. It's not their deaths that I want them to focus on, it is their life. And we shall celebrate in Heaven one day, never to be separated again. Life is hard, but G-d is good, and we will continue to live our lives in honor of the ones they never got to live out.