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...