Baby Lady Aria

When we had Isaiah, we figured to count our blessings and quit while we were ahead. After a family function, my sister in law had noted that maybe he was lonely (his social skills were less then prevalent). I had wanted to have another child. I admit, I wanted to know what it would be like to watch a little girl grow up. I presented the idea to Seth, and he was hesitant. We decided to pray about it. After a couple of sessions, he said to me "I saw her, we are going to have girl with dark hair." I know this sounds odd, as we are not psychic, but G-d tends to show Seth pictures when he prays. Mine is almost always poetry (which I find confusing). With that, he seemed more open to the idea, but we decided to continue to pray, just in case. We were concerned about kidneys, as this is something we always have to take into consideration. I found myself being told, if I live life in what ifs, I'll always wonder what could have been. Besides, as much as it hurt losing Aurora and Eli, I was happier to have had them for a little while than not at all. I'll be with them in Heaven for eternity, and life here is short so... After praying, we didn't know how long it would take us to get pregnant, but we felt we were ready. On Christmas Eve morning, I took the test. It was rather hilarious as I just took it for the fun of it. I really didn't expect anything. We were getting the kids ready to go somewhere and I ran into the bathroom quick. When I saw that we were pregnant, I could hardly contain myself. I wanted to keep it a secret until Christmas morning, for an ultimate surprise. So I buried the test into the trash can and came out, playing it cool (or so I thought). Seth asked me what it said, and I ,with this crazy look on my face said, "nothing." He just stared at me, and asked me again. I replied "nothing!" Then Seth asked to see the test, and I asked him what the big deal was. To which he replied, "I know that look!" He ran into the bathroom and started to look, while I tried to fight him out. The thing about us, is nothing gets past one another. I shouted, "yes, yes I am pregnant!" Oh how we cheered, we must have had perma-grin on our face for the rest of the day. I was a little nervous about telling people. I knew we'd need lots of prayers, but also I didn't want people to make it into a negative thing and ruin it for us. The reactions were mixed. Some people were ecstatic, while others were very concerned. I took it really hard, as we already loved this child so much, that no matter what happened our baby was here. It was hard being pregnant and dealing with Isaiah, but still I enjoyed being pregnant so much (I'd be pregnant for the rest of my life if I could, but that would be weird). Of course we had the countdown to the kidneys being present, so that was quite nerve racking. The first couple months were hard, because you can't feel the baby and you wonder if everything is okay. Finally we had the appt. The day of, on the drive over the doctor's office called to cancel as they were swamped. Seth had gotten out of work, everyone we knew was praying. This was really the only time I'd ever flipped out on them and demanded I be seen (don't mess with a pregnant woman!). I had never spoke to them that way before, so on the way over we picked up some doughnuts as a peace offering. I just couldn't wait any longer, I had to know. At first when we came in, they were a little stand offish. I apologized and explained. Our tech that had been with us actually admitted that the day had been so bad, they didn't want to deal with any other bad news. I just looked at her and said, "everything is going to be alright." I knew what G-d had said (although I still doubted a little) and I had to remind myself of that. So reluctantly she began. Within seconds we knew. Everything was okay and we had ourselves a little girl! I cried, we all cried. The doctor came in and played it cool and sent us on our way. I remember calling my friend on her cellphone at work, and her just screaming with glee(the loudest scream by far!)! While another told me, "I knew it! Woo Hoo!" The reactions were awesome, especially when I got to tell both sides of our family that there was going to be another girl. Since there were so many boys, it was extra fun. The weeks went all too quickly and on August 19Th, our baby girl Aria Blossom(had to have a nature middle name like her sister) was born at 6 pounds 15 ounces with, you guessed it, dark hair.

I had lost a lot of blood and the surgery itself was awful, but here was this little perfect girl. She was so polite. At night it seemed, instead of crying that she'd clear her throat and ask to be picked up. She was such a little lady. I was worried how Isaiah was going to deal with her, but surprisingly, she didn't phase him one bit. It was just like she'd always been there. I did go through some post partum depression with her, but not near as bad as I did with Isaiah. I held her all the time, and she'd snuggle so close. She was everything I thought a baby would be like. At night she'd cry and we'd come in and actually be able to soothe her, just by picking her up. I almost always knew what she wanted. At 6 weeks of age, she started crying non-stop. We finally had to take her down to the ER as she had a fever. We just thought it'd be nothing and wanted to clear our conscience. They told us they had to do a spinal tap. I freaked out. If you have ever had one, they are horribly painful, just awful and I didn't want to put her through that. I just thought, here we go again. The doctor had said they needed to rule out meningitis but that it probably wasn't it. So here was this helpless little thing getting stabbed in the back, I almost passed out, I had to leave the room. Seth stayed with her and said she was a trooper. The doctor came back with the results with this look on his face he confirmed our worst fears, meningitis. So she was admitted right away and taken upstairs to start antibiotics. I called my friend to post on the pages for me and I cried (really I am not a cryer!). We needed prayers badly. Everyone knew us on the floor and asked what was going on. Seth and I were well versed in shutting off the alarms and occlusions in the IV's. Aria was being treated for bacterial meningitis, but they were waiting for the test to be sure. I believe it was the next day that we found out it was viral, which is the kind you want to have. It still didn't make it any easier, as the whole hospital thing stirred up major emotions. Eli had died one floor down from where we were. It was really hard remembering and being so close. Aria brightened our home with her laid back demeanor. Her sweetness reminded me so much of Eli, and her looks that of Aurora. Every day, even now, I carefully coordinate her outfits with hair bows or ties. She's like a little koala, always attached at my hip.

She did end up getting pneumonia and it seems to have damaged her lungs. We are in the process of getting into a pulmonologist. When she gets sick it hits her hard in her breathing. Thankfully we have Eli's nebulizer to help us through those long nights. Aria is now almost 18 months old.





She loves to recite her ABC's, climb into everything, and mess up her brother's train tracks. She loves to eat and really can hold her own, although she does have us wrapped around her little pinky. Isaiah and her have a really special bond. Even though they have their moments, they really seem to love each other. Will we have anymore? I really don't know. Right now we have a lot of things to straighten out. The whole reason I have started this blog, is to start a new chapter in our lives. I am trying to learn how to grieve happily (if that makes any sense) as my identity does include being a mom with living and non-living children. I am trying hard to learn to live life less fearful and anxiety ridden, to step out of my comfort zone (winter makes that really hard) with G-d's help. I want to be who G-d made me to be without letting those inner demons take over. I want to live life to the fullest, so that my kids don't live in the secluded world that truly has entrapped me for so long. So now that the history of our kids is done, I will now begin to embark on this next part of my journey. So watch, pray, believe, and be amazed.

Our son, Isaiah Proclaim

So now, I am almost done with all the history of how I got started writing. We come to my now 3 1/2 year old, Isaiah Proclaim. We were so excited when he was born, as we really pushed the envelope in having more children. We prayed and prayed ( for good health and forgot to pray for patience) and out came this spitfire of a child. Elijah was incredibly laid back, more like his Dad. Isaiah, on the other hand, picked my personality to mimic. I remember holding him and it was so weird that he didn't have any tubes or medicines. Everything would be smooth sailing from here on out, right? With Eli, we fought so hard to keep him alive, that we never really dealt with "normal issues." From the time he was born, Isaiah cried all the time. Here was this supposed healthy child, yet he seemed more upset than Eli, who had been terminally ill. I was convinced he must be sick. I called the doctor non-stop and the protective Mama gloves went on. I was vigilant in trying to keep him from getting sick, for fear that he would die (Lord knows, he was crying like he was). Still, Isaiah cried and there was almost nothing we could do to comfort him, except for the TV. Most kids in the middle of the night cry to get picked up, we found to try and comfort him actually irritated him even more. So here I am, living the dream of having a healthy child, and I was terrified. The first year, he pretty much was inconsolable. I would try and take him out, where he easily got agitated, which in turn made me agitated. I became so depressed that I wanted to pack my bags and leave. I had found myself wondering if maybe G-d didn't want me to have kids, because He knew what a lousy mother I'd make. I cried all the time for fear that he was "detached" and the fear that maybe he was sick. Needless to say this sent me in a deep spiral of anxiety, depression, anger, and self loathing. I just wanted to be normal. Why did I always have to fight so hard for everything? It seemed my friends were so natural at being Moms, I seemed anything but. I found myself eating, just to comfort myself. I'd always been less than a hundred pounds, even after I had Eli and Rory, I bounced right back. This time, I had gained 30 pounds. I was so lonely. On top of his crying, I became so overprotective that I barely let him out of the living room. I figured there, he couldn't hurt himself. I threw myself into praying and trying to feel G-d's presence. I had hoped it would ease my anxiety and his. I also worked constantly with Isaiah and the ABC's, numbers, Spanish, and colors. He seemed to like learning and was quite eager to participate, so of course I pummeled him with info. not really thinking anything of it. So, at less than 18 months he was reciting the ABC's, numbers, etc. with ease. He refused to call us Mommy or Daddy and really didn't speak much, except with the learning questions. He hated to eat. Any time we ate, I wanted to pull my hair out. So I indulged him with anything to try and get him to eat, and pretty much that backfired. He ate only particular things and that was it. Isaiah also started to have massive temper tantrums out in public settings. Anytime we'd go anywhere he'd go to pieces with any type of transition. I hung out less and less with people. I felt I had to apologize for his behavior and be ashamed that I was a horrible mother who couldn't control her child. I kept on telling the doctor what was going on. She just told me, that he was a kid with too high of an intelligence was pulling one over on me. Isaiah began to fall in love with the solar system. By the time he was a little over 2, he had memorized all the planets and their moons. He also began to read. With every book he read, the more he learned. I would tell people and of course they thought I was exaggerating, that is until they spent time with him. Their mouths would hit the floor. While I loved his intelligence, I'd rather of had a child that complied with what I wanted him to do. I finally got the doctor to get us an appt. with a behavior specialist, she sent us there just to prove me wrong. Isaiah refused to be cuddled unless it was on his terms and I was spent. I wanted to hug my child without him freaking out. So finally we got in. Normally I am a person who always prepares for the worst, so I don't get surprised. This day, I was actually at ease. I expected they'd tell me I was over reacting. After a while of meeting with the doctor, he came out to tell me what they found. He sat down and just blurted out "your son is on the autistic spectrum." In sheer shock, I sobbed (really, It's hard to make me cry) as I'd wondered all along, while people reassured me I he wasn't. He went on to explain that he probably had a thing called PDD-NOS. He is highly intelligent, but has a hard time socializing. At first they said, he may never move out and he'd have a very difficult life ahead of him. We were devastated. But as they have gotten to know him, they have seen him grow leaps and bounds, much quicker than the typical case. I hated labeling him. I didn't want people to judge him or to become a label, I wanted him to just be "Isaiah." After much praying we enrolled him into 3 year old preschool, (I hesitated big time) to help him build the social skills that he needs. His school experience has been beyond awesome. I admit I was self conscience about sending him, afraid that he and we'd be judged, but it was the best decision we have made for him. He now hugs us and talks a mile a minute. He still is a genius (they tested him) but now he seems to express his feelings and be much more aware of what is going on. We are having him re-evaluated at the end of Feb. as kids with this can outgrow it with the proper treatment (although it varies). Still we are pursuing treatment full throttle as we want him to have as many advantages in life that he can get. He still tries my patience daily. We have to avoid large crowds, and constantly prepare him for the next thing of change. It's tiring, but we are having more good days than bad now. He is incredibly sweet and has the best laugh. We love him dearly and will continue to fight for him to have a regular life. I've had people say hurtful things, that they are glad their kids are normal, insinuating he isn't. I have had to really take stock in who we hang around, to make sure that they are positive and supportive influences for myself and him. Yesterday, we met with his best friend from school. As I was talking to his mother, it was like looking in the mirror. While her child has never been diagnosed, they tend to have similar characteristics. The two are inseparable. They actually played for hours. They pretended with some dolls and constantly hugged each other and called for one another. I was flabbergasted. Her mom drops her daughter off at school, where as Isaiah is picked up by the bus. She said they wait for each other and hold hands, they are two peas in a pod. I found my eyes welling up in tears. Tears of joy and hope, that he can actually play. I know it sounds silly, but Isaiah has always preferred the interaction of adults while longing to play with the kids. Her mother and I chatted like long time friends and felt utter relief in not having to apologize for every little outburst. I am so excited to see how their friendship will blossom and what type of a kid he'll be like. For those who have read my pages, know much almost every detail of our journey, so it's hard to simplify these last years. It's been a struggle, but I can finally see the light at the end of the tunnel. I am learning to trust my instincts, and trying hard to follow G-d (I am quite the control freak) and just to relax. Some days he and I do great, while others, I have to remind myself that tomorrow will be a new day. You are probably wondering when Aria will get mentioned, that my friend is for the next posting.

Lost

With Eli needing 24 hour, round the clock care, I didn't know what to do with myself any more. I almost felt like I didn't belong in Heaven, and I didn't belong here on earth. I would look outside and see everyone going along with their lives like nothing had happened. I just couldn't understand how life was still going. We clung to our faith as much as we could, but like humans do, we had our bad days (and I had a lot of them). We found comfort in our support groups, although ours was kind of a unique situation. Our child had lived for 6 1/2 months and died a pretty gruesome death. We went to a grief counselor to try and deal with what happened and learn how to rejoin regular life again. Seth and I also vowed to grieve deeply. We had met many parents of children who thought it was best to not acknowledge what had happened. Almost as if their child had never existed (we also found they had deep emotional repercussions later on in life). We found most people like to be around people like this, who put a smiley face of "they are with Jesus and that's fine by us." Now, I know that they are in heaven, but when your child dies, your human tendencies come out. I admit it, I didn't want them in Heaven, I wanted them with me. I know we all grieve differently, but I didn't want to forget my kids and I felt their lives served a huge purpose. I am going to miss them every day, whether people like it or not. So we put up their pictures and continued to grieve. Some might say I took it too far, but in my mind, I am still alive (as I contemplated suicide many a time)and I survived. I am no longer the same person I once was. I am quicker to feel compassion and empathy for those in times of great sadness. I am also quicker to anger in times of injustice. I have learned in the United States we are taught to act as though nothing has happened after a couple of weeks of a great tragedy. But, if you look at other countries, they grieve openly and hard. It is not seen as shameful, it is seen as human. So needless to say, we lost more friends due to my expression of grief, which I felt to be more loss and more failure. I even offered Seth a divorce, as I wanted him to be able to have children that were healthy and a wife that could be happy, and not scare off friends. Let's just say, he wasn't happy at my suggestion and I was to promise never to bring it up again. We ended up having to have an autopsy for Elijah. This was not an easy decision as we didn't want anyone to mess with him anymore. Most people would think it was the lack of kidneys that killed him, but it wasn't. I had so often wondered if I had killed him. The night before he died, I was instructed to give him a double dose of Tylenol, and I had wondered if it was too hard on him. So when we went to his autopsy reading, I actually thought they were going to arrest me. When I look back, I can't believe how ridiulous that really sounds. We found out Eli died from a super bug. It was a combination of E.Coli and Klibsella (sp?). We have many speculations of how he got this, but we'll never know for sure. The thing about E.Coli is it is a horribly painful way to die. We saw it first hand and I wouldn't wish it on my worst enemy, let alone a helpless baby. The ironic thing of it all, was he had approved for his kidney transplant the day before. We knew he could die from a potassium spike or so many other things, but this never crossed our minds. With all of Eli's health issues, we had been instructed that he could not get sick. So we became germaphobes. We washed our hands constantly and disinfected daily. To this day I still do. It drives everyone around me crazy, including myself. It sounds delusional, but I am afraid if the kids get sick, they'll die. I know it isn't realistic and I understand all the facts, but I just can't get my mind to believe it. I have gotten better, but it's still really annoying. I can't tell you how awful it was to sit in our empty quiet home. We tried to talk to people about it, but most wanted to pretend nothing had happened as it was depressing and made them rather uncomfortable. I was even instructed by some close family to "think about other people's feelings first." That blew my mind. Here we were, our life turned upside down and I had to worry about how other people were feeling, the same people who's biggest worries seemed minuscule compared to ours? Well, that just outraged me. So I continued to write on the carepages how I felt and pretty much shut down to the outside world. Thankfully, G-d has blessed me with Seth. He truly is today my soul mate and best friend. His love for me is unconditional, a rarity in this day and age. The statistic's say that couples who endure the loss of a child have a 75% chance of getting a divorce. The fact that we are still together and are as close as we are, is a miracle provided by G-d. I don't think I'd be alive if it weren't for my Seth. Back to the story. I didn't know how to relate to anyone, except for those who had been in our support group, who validated our feelings. Now, there was also the rare few, who had never experienced what we'd been through, who really stood by us. They'll never know what that means to us. They dove in deep with us by listening and just being there. I still find to this day, that I have a hard time "fitting in." Now that we have more kids, I find myself trying to make friends, but it's really hard. I didn't grow up in this area and I don't have a ton of family, so it's kind of hard being a stay at home mom trying to make friends. I tend to wear my heart on my sleeve and I say too much too fast and I think it's off putting. I guess in my brain, honesty is the best policy. So I figure life is to short, just lay it out there and if they want to be my friend, great! If not, then at least I didn't waste years of surface chat. I tend to dive deep quickly. After losing the kids, I realized how precious time really is. Money, things, all of that worldly stuff can help, but it's the time and love that really matters in the end. I have found my personality scares the hoo ha out of people. I want to be true to who G-d made me, and I have tried to conform to the "norm" but I just can't. I'd rather have a few close friends who we mutually love and respect each other, than hundreds that I really don't know. The crazy thing is, I really am a people person. I love to be with others, although I am limited to small groups due to my hearing. Oh yeah,obviously I have BOR syndrome, and one of the things it hit me on, was my hearing. I wear hearing aids in both ears and am pretty much deaf without them. My hearing aids are close to a decade old, so they really aren't working the way that they should, so I am having a harder time in social situations more and more with excess noise. I read lips a good chunk of the time, which is hard on a play date, trying to keep track and chase my little monkeys. Anyways, I know this posting seems pretty depressing and a little all over the place, but this was just what happens in my thought process. After losing the kids, you'd think we would have been terrified to have anymore. We prayed and prayed, and also met with a geneticist who told us again, we'd be fools to stop trying. With lots of prayer, we felt G-d was telling us to try again. Needless to say, our families were terrified. I really can't say I can blame them for how they felt. My own doctor begged us never to get pregnant again (actually I got scolded). But if you know me, I tend to do things the hard way and I am incredibly stubborn. We started doing our "listening prayer." I used to think people were nuts for doing this, but if you really diligently pray, G-d will answer you (no, I have never heard an audible voice). Sure enough, we got pregnant again, with another boy whose name is Isaiah. We waited, for what seemed like forever to find out about his kidneys. At 16 weeks with lots of people praying, there they were! I had never seen natural amniotic fluid. Oh and the kidneys, his beautiful beautiful kidneys. Our tech. who had been by our side with Eli, sobbed along with us. She later told us, she couldn't eat the night or the day of because she was so worried. We were just elated. I'll tell you, even though he looked good, because of all the other stories we had heard, we were still worried about losing him. So it was a tough pregnancy because of the emotional repercussions that followed. I had known many friends that had stillborns, whose children were perfectly healthy and for no reason died. So that was always a worry. It was also hard to figure out how to reuse Eli's things. I felt guilty as I didn't want Eli to feel like I was replacing him (PS, never tell a family after they've lost a child that they shouldn't try and replace them, they know that) as I knew he was a separate individual. It was hard balancing grief with joy. I was still so confused, yet ready to hear the sounds of giggles and the smell of diapers filled with pee (sounds gross I know, but it's true). Thankfully we had great friends in our support groups who walked along side us, who reassured us it was all very normal. Well, we decided Isaiah's middle name to be Proclaim. Let me tell you, to this day, he lives up to his name. We wanted to Proclaim that G-d had gave us him. We wouldn't tell anyone until he was born and the looks on their faces were priceless. Our little man was born on July 17Th at 7 pounds and 1 ounce.







I loved being pregnant (aside from the worry) so I was kind of sad to be done, yet so excited to be able to hold a baby again. I remember them laying him on my chest and him doing a push up and looking me square in the eye, from that moment he pretty much tried to become independent. This sounds kind of stupid, but in the kids passing away, I imagined myself being this perfect Mom. Almost like Julie Andrew's in the Sound of Music. Little did I know what was in store, from my son Isaiah. But that is another posting in itself. Until next time...

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.

Elijah's story

I wanted to take a while to really think about how to write Elijah's story. I could write a novel alone, just on his short time here on earth. Since many of you already know his full story, I have decided to write a condensed version. First, you will notice I write in one big paragraph most of the time. I started this on the carepages because every space would be counted and you were only allowed to write a certain amount of spaces, so it's my writing style (even though an English teacher would gasp). Let's begin. I had left off that I had two miscarriages after Aurora, about six months apart. We were devastated. We had spoke with a geneticist about the BOR and had a "genetic painting" done of Seth's and mine blood work. It showed absolutely no reason to go ahead, it was just a random thing. The chances of anything happening again would be astronomical. Increasingly, I became more and more devastated. I actually began to have "preg-dar" or baby radar. What people don't realize after your child dies, that even the littlest things are major obstacles. To go shopping during the day and see baby items, pregnant women, babies, was a stab in the heart. I remember going to our support groups and telling people, thinking they'd think I was crazy. I found out most of them had family shop for them or they'd go shopping after midnight, just to avoid the same things. I was relieved and we took their advice. Seth and I began shopping at 1 in the morning. I still cried walking by all the baby stuff. I can't express how alien you feel leaving the hospital after being pregnant with no baby. You almost feel like you abandoned your child. I remember asking if I could go and sit down at the morgue with Aurora until we could have her service, they assured me it wasn't a good idea. Looking back, of course it makes sense. I knew the nurse was right, but it still didn't register. So with each miscarriage, the longing became magnified. I couldn't go to family functions, as almost all of our siblings had children her age. I felt immense guilt, that maybe she'd think I wasn't loyal to her anymore. Of course our family was upset and thought I was going off the deep end. I began to resent them in the worst way possible. I just couldn't understand why I wasn't allowed to grieve, to talk about her, to carry her with me. I felt I had to respect their feelings more than they respected mine, and I was the going home to an empty nursery in our quiet home. I just couldn't pretend to be okay, that's just not who I am. Finally the day came when we became pregnant with Elijah. We had prayed a lot and felt that our time was coming, and sure enough the test agreed. We were excited. I wouldn't even say cautiously. After having Aurora, even though it hurt so terribly, I remembered how wonderful I felt to be her mother. So away we went. Our families were concerned, which angered me even more (I am a very reactive person). Now I know they were just worried, but at the time, I just couldn't understand why they couldn't support us. A week into his pregnancy, I began to bleed and it felt like deja vu all over again. I called our specialist, but couldn't bring myself to go back there, so he recommended someone else. My friend's who went to him, loved him too, so I went. I told Seth, I felt the same way I did as with Aurora. He just thought I didn't know anything different, but he was wrong. They immediately put me on bed rest at around 9 weeks. I could go to the bathroom and shower for no less than 5 minutes, the rest was on the bed or couch for me. I gladly agreed. At 12 weeks it when you can begin to see a fluid diminish, and that is what happened. The kidney's aren't really visible, so it's more of an assumption. They told me to come back at 16 for confirmation. I shut down. I wanted to die. Seth begged me to go and see a faith healer (not like Benny Hinn). I thought he was nuts, but agreed because I was desperate. We went to go see him at our church. He came from North Dakota and kind of looked like Colonel Sanders (the KFC guy) except in a plaid sports jacket. He was far from flashy and looked like any other elderly man. I was still skeptical. When it came my turn, we didn't tell him much just to see what he'd say. The things he said blew my mind, it was like he knew our life. He prayed over us and said that this child would write a new page in the medical books. I asked him would the baby survive, and he said that wasn't his place to say. When he prayed over me, it was the strangest feeling. It felt like all the evil left my body and I felt renewed. I actually smiled. We left there bewildered, we felt peaceful and the man never asked us for one dime, he just told us to go home and praise G-d. We didn't want to tell our families for fear of looking even more nuts, but we felt hopeful. I began to truly search out G-d and not just blame him for bad things. Before our appt. we read verses to our baby, especially Psalm 139 (look it up!) and we trusted G-d for the first time. It was confirmed that he had no kidney's and he was a boy. I sobbed and howled. The doctor just walked out of the room, while our tech cried with us. He came back later and said "don't cry yet, I am calling U of M and I know someone, we might have some options." He came back later with the idea of injection saline into my belly once a week and then soon every day. The idea was the saline would act as the pseudo urine and form his lungs. After he'd be born, he'd go on dialysis and hopefully some day, get a transplant. Now let me be clear, my children had no kidneys, nothing, Nada, zilch so this was a huge gamble to see if he'd even have a bladder (if they have no bladder, you can't do anything, we'd have to wait until he was born to find out if he had a bladder as he couldn't pee). So when they'd fill me up, they'd have to see a stomach (to show if he could injest the saline) or else they couldn't proceed. He also warned me that the baby or I could get a deadly infection and either I'd go into preterm labor or one or both of us could die. I didn't care, I just wanted my baby. So every appt. I'd sign a paper stating that I knew this, it was weird signing mine and my baby's life away. We had to start ASAP. It was like a reverse amniocentesis. It was painful and long. It took about 45 minutes to get the needle in and all the fluid. I contracted while holding as still as possible. This was they day I knew abortion was wrong. You see, the fluid was room temp. As the fluid poured in Eli tried to get away from it, as it was cold. He truly reacted at 16 weeks! He began to open his mouth and gulp in the saline as we watched it go down his throat into his stomach! We all cheered and squealed, it was a go! This was just the first step, but a giant step it was! It was worth every moment of pain and we praised G-d. We decided that after meeting with so many people from our church that prayed with us that his name should be Elijah. Not only was he a wonderful prophet, but his name meant, The Lord is my G-d. We also decided Praise should be his middle name, so that we'd never forget to praise G-d and how wonderfully what a miracle his life would be (hoping no kids would pick on him at school for such a unique name). Elijah Praise. We went in every week for an infusion, they got longer and longer as he drank more fluid. The only time I was allowed to go out, was our appts. so it was exciting to go out. We soon had to switch over to twice a week and then every other day for infusions. They were long and painful, but worth every moment to see him stretch and drink. We were smitten. We had close to 30 infusions by the time he was born, but would his lungs be developed was the question? The doctor, his wife, the office, became our family. Even when they went away of vacation, they drove over an hour to get reception on the phone to check on us. We talked several times a day as I had started on medicine to stop pre-term labor. I was so happy. We prayed and prayed. Then one infusion at around 36 weeks, the doctor could barely get a needle in anymore and he said it was time to deliver. We were shocked. I wanted to carry longer as I loved being pregnant and I was scared that he wouldn't survive. So on September 30th, 2004 he'd be born. I remember we set up his nursery in hopes he'd come home one day, putting our faith in G-d . I had an outfit that was a "just in case" it was all white with stars on it. We went in the hospital not knowing the outcome, but with prayer warriors on hand to help us through, we felt G-d's presence. I had to have c-section as the doctor didn't want to put him through the birth process. It seemed like a billion people were in the room. I was scared out of my mind and a little embarrassed. As the doctor cut him out, I heard him cry, Eli that is. Out my boy came with light blond hair. 6 pounds even. They said if he was any smaller, he probably wouldn't make it. Seth could barely contain himself and I was on cloud nine. Everyone was talking about the baby with no kidneys, and there he was, alive and well. They whisked him down to the NICU, I barely got to see him. I made Seth promise that he wouldn't leave his side. Seth pretty much stuck to his promise till Eli died, they were best friends. Well, I guess I can't write everything in one posting (and this is the condensed version!) as it is still a very emotional thing for me. I will write about his life in the next one. Every child is a miracle, but Eli was something not of this world. No child had ever been born without kidney's and survived for a lengthily period of time. His life still amazes me. You will see how we watched, prayed, believed, and became ever so amazed. Praise G-d.

It all started when...

Hello everyone! Today is a start on a new chapter of my writing. For those of you who have been with me on the Carepages, you know my story. For those of you, who are new, I will give you our history. My husband (Seth) and I have been together for almost 10 1/2 years now. When we met, we knew our relationship would go through a lot. But never in wildest thoughts, were we prepared for what was to come. When we became pregnant with our 1st child, we were shocked and ecstatic. We had been trying for over a year to get pregnant and just thought that we couldn't have children. To our amazement, we found out in the Med. center that I was pregnant when I cut my hand open (I still have that beautiful scar). A couple of days later, in my heart, I knew something was wrong. I spoke with the doctor and she told me it was first mother jitters. I had hoped she was right, yet knew she was wrong. After bleeding and cramping while I was at work, she finally sent me in for an ultrasound. Seth and I were excited, as we'd never had been apart of one before. I remember the tech walking in and doing her thing, when I noticed her becoming more and more quiet. Something was wrong. We asked for answers, but she couldn't give us any. She kept on coming in and out of the room with no words. We didn't have the greatest insurance, so it was place where there was no doctor to speak with. I guess they just send the results to your doctor. The tech finally spoke, "We need to get a hold of a specialist, your doctor will be in touch." And that was that, we sat there in shock, as we were young and had no idea what to do. I am a compulsive worrier, so I did what I did best, I worried for what seemed like years. My doctor called and told us we needed to go immediately to a Perinatologist as soon as they could get us in. Meanwhile, I had no answers to tell my job and I was missing more and more work. Long story short, we got into the specialist to be told that our baby had no amniotic fluid, which probably meant that there were no kidneys. Being all of 22 years old, when you hear kidneys, you think, easy transplant, not a big deal. So he told us to come back at 16 weeks to confirm. The weeks inched by, every day I would bleed and be told I might miscarry at any moment. So I started Progesterone shots in my hip everyday. My husband would give them to me. They were painful, as the fluid is incredibly thick and the needle goes into the muscle. I didn't care, I just wanted my baby to live. Finally the day came to go back to the doctor. He came in to confirm our worst fears. "Your baby has no kidneys. If a baby doesn't have kidneys, they can't produce urine. Amniotic fluid is baby urine which helps develop the lungs. Your baby will probably be born still born. So you may want to consider and abortion." We sat there, wide eyed, with no words able to come out. How could this happen? He went on to tell me the baby would suffer more as the baby grew, as it would get cramped and there was no chance for life. My heart felt like it had stopped. He later sent in another doctor, just to be sure that he was correct. This doctor came in quietly, and agreed. I started to cry. He asked us if we'd like to go into the other room and talk. I agreed quickly. As we waited for him to come in, Seth and I clung together like koala's, and cried. The doctor came in and sat down and asked me a question I'd never forget. "Are you a believer?" I replied yes. He then opened up a bible and showed me a verse in Romans 8:28, "And we know in all things G-d works for the good of those who love him, who have been called according to His purpose." He went on to explain, but I really wasn't listening. I just remember at that moment, wondering how G-d could do this to us. I then went on to tell him what the other doctor had said about abortion. I asked him what to do. Abortion had never been anything I'd ever considered to do, so I had no clue. He then assured me the baby would feel no pain and that we might even be able to deliver the baby alive, but that it would die shortly there after. Honestly looking back, I was scared out of my mind and was quite freaked out about a baby dying inside of me and then having to carry it around. Thankfully we decided we wanted to meet the child, as I was already in love. We weren't able to find out the baby's sex as there was no amniotic fluid to give the ability to look around. I am nosey, so I really wanted to know. Every day was a struggle, but thankfully the doctor that spoke with us agreed to be my primary. With that he allowed for us to have as many ultrasounds that we wanted, so that we could get to know our baby. I was truly grateful, as most people count a baby alive after it's born, me, it was the day I saw two lines. With each ultrasound we grew to know the baby, it responded when Seth would come home and talk, when I cried, when I ate, it was like I the baby's personality. Finally at one of the ultrasounds, I begged the tech to guess. She looked long and hard and finally said that the baby seemed to have hips, that it could be a girl. I was elated! I had originally wanted to name her Isabella Rose, but when I learned she wasn't going to live, I wanted a different name. I remember sitting up late one night (I began to have insomnia) and watching a movie on Discovery. They were talking about the Northern lights, and said "the Aurora Borealis, you never know when or how long it's going to stay, but it's a wonder to behold." I looked at Seth and we knew Aurora would be her name. Also, the story of sleeping beauty, her name is actually Aurora. We knew she'd die, but we didn't know when or how long she'd stay but that she'd be beautiful, so we thought she'd be our "Sleeping Beauty." Her middle name was Skye, because I wanted it to be something that would constantly remind us of her, so we'd never forget. My relationships deteriorated with my pregnancy as I had only focused on her. I was very protective and wanted her to count every bit as much as anyone else's pregnancies. I found out that most people wrote her off as it made them to uncomfortable, so it was just Seth and I (that's how I saw it at the time). Aurora Skye was born on June 21st at Dawn, she lived for an hour and a half. She cried to little cries and didn't move much. For that hour and half, I'd never felt so alive and whole. With family surrounding us, she quietly died in our arms. The room was bright and golden, it seemed like it was noon, but really it wasn't. Everyone got quiet and when they told us her heart had stopped, and I felt I died along right with her. She was so beautiful, 3 pounds 11 ounces and 16 1/2 inches long. She had finger waved blond/brown hair and beautifully long fingers. I had never felt love so intense before. We ended up cremating her (which is a story in itself), we couldn't afford to bury her. So her ashes were put into a Royal Dalton and the rest in a silver locket necklace that I wear around my neck to this day. We did have an autopsy done to find out what happened. Thankfully we did, as this informed us of a new thing we'd never heard of. We were first told that she had bilateral agenisis due to Potter's Syndrome, which means it was a fluke. We then were informed of a syndrome I'd never heard of and now has become a regular thing in our home, Brachial Oto Renal Syndrome (or BOR syndrome) it affects the kidney's, ears, and the neck. Sometimes you can have one or all, she unfortunately got the worst of it. Me, I have renal dysplasia and really bad hearing. My life fell apart after she died. I was so depressed and angry that I could barely function. We later got pregnant twice, which ended in miscarriages. We got pregnant again with our first son Elijah, but I'll save that for another day. After I explain my history, so you can get to know us better, I will then go forward with what is happening now. I intend for this year to be a year filled with goals to live my life as full as possible, letting go of the anger and embracing the joy. But if you are new, I must warn you, I say what's on my mind. Some days are high, and some are low, but most of all, I intend to be as real as I can. I am inviting you into my life to share a wide variety of emotions and I love to hear feedback, so feel free to leave messages or questions. I am searching to find the life I am hoping to lead without forgetting what is important. I am hoping to live my life for G-d and not for myself and others. But hey, it's just a process, I am human after all. Anyone who knows us, our motto is "watch, pray, believe, and be amazed."

How about another test.

Here it is, just another test.

Test Post

Testing Testing - 1 - 2 - 3