A Story That Needs Telling

In my life, there are a very select few who know this story. There are several reasons for this: nobody really understands except John, people are too judgemental and jump to conclusions, my own child dosn't know for a couple of reasons and I don't want it revealed to him inadvertantly. The biggest reason? Because I have 2 sons and a husband now who all depend on me to be a fully functional wife and mother, and if I had to relive this every day of my life, I think I would literally die. But this time of year is particularly hard on me, and even though it will be a horrendously long post, I have to get this out of me. I have to tell the story. Even with the anonymity of the internet, the thought of telling it is making me have palpitations, my hands shake, and my breathing become ragged with anxiety. Because every time I stop and allow myself to feel this, the pain gets too bad and I have to stop myself or I will lose all ability to function in my day-to-day life. Even with the loss of both of my parents and an older brother, I still had never felt pain so deep that it could literally paralyze me. Until this happened.



His name is Benjamin. This month, he will be 13 years old. He has blue eyes and blond hair. And in my heart and mind, as much as Evan and Zachary are my sons, he is also.



I was so young and dumb. 21 years old and facing an unplanned pregnancy. I was still reeling from my mother's death when I got involved with an older man and got pregnant, and of course the man disappeared. It all sounds so tawdry now, but you would have to understand the place I was in at the time: far from a state of mental and emotional health. But there I was. And I was going to have a baby.



I had the same sort of pregnancy with Ben as I did with Evan and Zach. Preterm labor and crazy contractions, only that was back when I had the ability to dilate and I spent the entire last trimester 4 centimeters dilated. And completely alone. At 35 weeks, they decided I had made it far enough and decided to put me in the hospital with Pitocin to get me the rest of the way, but it didn't work. After 4 days of pain-med -free Pitocin contractions, they did a c-section. My first one. And I gave birth to my first preemie. And he was perfect. Absolutely beautiful. And all of my immaturity dissolved as I held him. I didn't have my mom anymore. Nor did I have my father or my completely dysfunctional siblings. But I had Ben.

I breastfed him, too. And I would sit and rock him and nurse him in my tiny one-bedroom apartment. And I would cry and cry because, after all I had been through, I just knew he was too good to be true and something was going to happen to take him from me. I just knew it.

Somehow having Ben brought back all of the issues with having lost my mom. I think it was just that I needed her then more than ever. But as the 2-year anniversary of her death approached, I had no idea how I was going to make it through. And then it happened. I will never forget that day.

Ben just wasn't acting right. He didn't want to eat. He was mottled and listless. And I was so inexperienced. I called the pediatrician and told them what had me concerned. I was advised to make sure he had enough wet diapers to show he was hydrated and to just relax. And I tried. I watched him almost the entire day, but he just got more and more lethargic. That evening, I called the doctor's line back and spoke to the on-call nurse. I remember my exact words: "You cannot convince me that there is nothing wrong with my baby." And so they reluctantly referred me to the local ER. We had Medicaid and it required a referral for ER services. I began to believe, also, that I was just being a nervous mother. But I still wanted to be sure, so I went. I took a cab there, for Christ's sake! And what happened from there is as permanently tattooed on my brain as much as my own name is.

We waited in the waiting area for what seemed like forever before a triage nurse called us up to see us. I apologized for my over-reacting as I tried to explain why I was concerned enough to bring him to the ER. I didn't have to do this for very long. As soon as she put her stethoscope to Ben's chest, her face went white and she grabbed him out of my hands and rushed to the back of the ER, behind the double doors that remain locked to the public until someone buzzes you in.

And I heard a drone of voices asking me his date of birth, his history, my name. All as the white noise of terror filled my head and I stared at the doors though which my angel had just disappeared. I just kept asking what was wrong, where was my baby, let me go to him.....Finally, they buzzed me in. And they ushered me to his room. But all of these people were in there. And they were stripping him down. And attaching monitor leads all over his chest. And I just kept begging them to just please tell me what was going on. But all they woud say was, "Honey, you need to call someone to come and be with you". And my thoughts! This is how they treated us all of the times mom almost died. Is Ben going to die? Please God, Pleasepleaseplease. I'll do anything. I'll be a better person. Please. No.

I did what they told me to do. I called my friend, Cindy. I told her they said I needed someone there with me, but I didn't know why. She urged me to go back and demand to know what was going on, that Ben was my child and I had that right. And so, disoriented by the maze of curtains in the ER, I tentatively walked back to his room and peeked behind the curtain to ensure I had th right bed before barging in. Oh. Oh My God.

I could just make Ben out on the stretcher between the mass of people in that room. And someone was reciting numbers that meant nothing to me then. And I heard the word "CLEAR!". And I saw my son's tiny six-week-old body jerk with the shock. We think we know the things we would do and say in that situation, but we don't. I know my hand covered my mouth and I let out a low wail that alerted the staff that I had seen too much. Someone's strong hands grasped my shoulders from behind and pulled me out of the room while one of the doctors kicked the door closed with his foot. By this point, I was begging. Please. Let me have my baby. What's wrong with my baby as a random nurse held me while I sobbed. Some man waiting in the hall to have his son's ankle x-rayed pulled a chair over to me, urging me to sit down and I cursed at him. And the nurse whispered over her head to a lady at the nurses station to please call a chaplain for me. Which only made it worse. You call the chaplain when someone has died. And they called Cindy back for me. I heard them say something about a chopper coming. And then I was sitting in this "quiet room" in the ER with a nun from the Chaplain's office. She held my hand and we didn't speak. And then Cindy was there and holding my hand while I cried and rocked back and forth in my grief. A nurse entered the room and said, "Mom, you can see him now." I thought I was going to see him in order to say goodbye.

They had moved him to a larger room to accomodate the equipment. Had moved the stretcher out for his tiny isolette. He had 3 IV's. He was hooked to a monitor for his heart, an oximeter. The wires seemed to cover his tiny newborn body. But he was alive. I couldn't hold him. There was only one thing I could do. From my pregnancy, "You are My Sunshine" was our song. I would sing it to him in the womb. There used to be a Johnson and Johnson ad that had a mom singing it while she washed her baby, and everytime it would come on, newborn or not, Ben would turn and look at the tv. It was our song. And so all I knew to do was lean down and press my cheek to his and sing our song to him. And there and then, at six weeks of age, he looked at me and gave me his first real social smile. Through the wires and tubes.

Right afer that, he was air-lifted to Children's Hospital. Even though it was 10 minutes away, he was that fragile that they couldn't risk it. And it was there that I learned about the defect in his heart that had caused his heartrate to climb higher and higher. When we were at the first ER, it had reached over 360 beats per minute and his body couldn't keep up. He had gone into congestive heart failure and his body had been in the process of shutting down. And he had to be resuscitated. They estimated that if I had waited just 10 more minutes, he would have died. And although there were different causes involved, he went into congestive heart failure on the 2-year anniversary of mom's death from congestive heart failure. She had just had hers as a result of lung disease.

Ben ended up with a team of specialists. A pediatric cardiologist. And then another more specialized cardiologist who dealt exclusively with electrophysiology of the heart. I was taught to check his pulse. He was on a heart monitor all of the time. If his heartrate got over 120, I was told he needed to get to a hospital. But babies have fast heartrates and I was just a young girl. If he cried, he got up there. Later when he was diagnosed with asthma, and I would give him his medications, it would make his heartrate increase. It was a mess. And as a result of my inexperience and lack of knowledge, this meant I had him in th ER a lot. I was so terrified after the first experience with it. Well, one time, Ben saw a doctor who was part of their Child Abuse Task Force. And there was this new thing flooding the media called Munchausen Syndrome by Proxy. And though he never asked why, he saw the number of times Ben had been to the ER and he made his false accusation. I was 6 months shy of my 23rd birthday and Ben was 17 months old the day my life ended. The state, acting on this over-zealous doctor's word, came in and took my baby. They wouldn't tell me where he was. I just know they kept putting him in foster homes. In desperation, I did the only thing I could think to do: I called my oldest sister, a cardiac nurse, thinking she would help me. She would understand and help me get my son back. Instead, she used a grudge she harbored against me for being mom's favorite and she got custody of Ben. She completely impeded the process. Social workers gave me all kinds of hoops to jump through without telling me how to jump through them. It took them over a year to find a forensic psychiatrist to evaluate me. Thinking this was the final task in getting my son back, I looked to my appointment with him to be my lifeline. And he did exactly what I wanted after a full day's worth of tests and psych evaluations. During the final step in the process, an interview with me, he finished up and told me I could leave. I asked what they were going to do, and he asked what I meant. "Well, they said I have Munchausen Syndrome. You're supposed to tell them if I do or not", I said. He asked who had mentioned those words to me, then started to describe why it was they would think that. That I had Ben to the ER 32 times in 17 months, which was very Munchausen-like. "But wouldn't that also be the actions of a mother who is scared to death for her baby?", I asked. He gave me a gentle smile and said yes, and that was why he was going to tell them I did not have Munchausen by Proxy. I thought it was over. Ben would come home. I would get my life and my breath back.

No. The state continued to drag their heels. And everytime I called my sister to arrange visits with Ben, she would scream at me about Mom. About stuff from my childhood. I still did all could to bring Ben home. I met John in the midst of all of it. He even went through parenting classes to show the state he was supportive of the goal of Ben coming home. We waited for the report from the psych eval. The psychiatrist had a heart attack in the midst of that. It took 6 more months to get his report. The report that told them that I did not have Munchausen Syndrome, but instead had emotional hang-ups about my mother's death coupled with the chronic illness and resuscitation of my newborn son that cause me to panic. He advised counseling for me, and I agreed. Always with the goal of bringing Ben home.

John and I were married and I was in the first trimester with my pregnancy with Evan when a social worker sat in my living room and told us that the state would be recommending that Ben remain with my sister because of the length of time that had passed. The length of time it took them to complete the investigation. I kept up visits with Ben, though. Anytime with him was better than none. And then the complications with Evan's pregnancy started and I was hospitalized indefinitely for my crazy contractions. I couldn't regularly make the one-hour drive to see him because I was pretty much held hostage in a hospital bed on a mag sulfate drip. My sister used this against me and stopped complying with the order for my visits. I was in the deepest, darkest, blackest of depressions without my baby boy. John and Evan are the only reasons I resisted suicide. Evan needed me. And though it felt as if my heart were being ripped from my chest, I knew that Ben needed a stable home. He learned to call my sister "Mommy". He had years with them. And even though the state was horrifically wrong, I could not allow myself to disrupt his life. It wasn't his fault, and I loved him too much to hurt him. I moved away because the temptation to take him and run with him was just too great.

Years later, I saw Ben. We moved back up north when I took my job at the hospital in Indiana. He was 9. Evan's age now. And he had since been diagnosed as autistic, which killed me. He came to my house, thinking I was his aunt Andi. And it killed me a little more inside everyday. And gave me the greatest joy. I got to see Evan play with his older brother, even though it was under the ruse of cousins playing. But Evan is a smart, smart kid. And one day, he referred to Ben as his brother. And we had to end it because Ben's emotional issues meant that he couldn't handle knowing I was really his mother. Even though I think he knew. He would always ask me to tell him about his birth. And each time I would see him, it would break my heart and I would be reduced to the suicidal trainwreck instead of the wife, mother, an healthcare professional I had since become. I couldn't allow that. Not for Ben. Not for John. And not for Evan. And I had to move on.

Or so I said.

I will never move on. Over the years, I have gotten very, very good at the act. Now, if you see me, you would never know I'm just a shell. You cannot even see the jagged scars running through every fiber of my being. And I cannot escape it. His birthday is the 18th. And it is so hard. But it isn't just that. He comes back to me about a million times a day. Zach looks a lot like him. The same rosy, chubby cheeks. The same blue eyes. And Ben is here. When I'm in the car, on the way to work. When I'm changing Zach's diaper. When I'm helping Evan with homework. And I bide my time until he's 18. When I can tell him the truth.



Benjamin, you are my son. My firstborn. Even in your absence, you have never been far from me. You are always here. Do you remember my voice? I need you to remember. Can you hear me singing to you as I nursed you to sleep? Do you remember Love You Always? The story I used to read to you when you were a baby, as you drifted off to sleep? By Robert Munsch. "I'll love you forever, I'll love you for always. As long as I'm living, my baby you'll be." It's so true,Ben. You really are my Sunshine. Still. Always.