Monthly Archives: July 2014



We are expecting. A baby girl. A new life. In a few months. This is amazing. And joy filled. And beautiful. And terrifying. In the world of loss, there is a name for this person, this little being conceived after the death of a previous child. They are called “rainbow babies”. I came across this term early in the year when I first learned I was pregnant and instead of feeling the surety and innocence of pregnancy that I had with Bennie, I felt all kinds of conflicting emotions. Joy and fear. Love and loss. Peace and anxiety. All at once, jumbled in my head and my heart. The fear and anxiety took over often. It was too soon. I was still trying to figure out how to live with grief and figure out how to be a mom to a son we had lost. My body was tired. My heart was tired. My spirit…was tired. I went back to my therapist. I cried. I mourned. I felt enormous waves of guilt for my small burst of happiness. I pushed and tried to remain disconnected to this new child for fear that I would forget the connection with our angel baby. My mind spun with the what ifs…what if something happened again? What if I wasn’t capable of growing a person who could live? I was frozen with the thought of potential problems/threats/loss. I could not survive it. I simply could not. My heart knew this…my head was trying to fight it. I felt out of control and very lost. My physical response to this was sincere and heavy. I was extraordinarily sick…couldn’t eat, sore, sluggish. I had all the symptoms of the depression that had plagued me last fall but with the added bonus of an influx of hormones and a uterus trying to once again produce a person. It was exhausting.

At the same time, I wanted so very badly to be happy and joyful. I wanted to feel what I felt when I was pregnant with Bennie…that immediate connection, that instantaneous love, that bond of mother and child. But I couldn’t do it. I knew too much now. I knew that things don’t always turn out in the positive. I knew that appointments that should reassure you actually didn’t because everything the first time had gone so perfectly…until it didn’t. All the markers that should make me feel better really were just empty platitudes. Hearing the heartbeat….well, until week 16 this little gal wanted nothing of that…every visit we ended up in ultrasound because she would absolutely NOT let us hear her in the office. No way. Week 16 was the time period when the specialists suspected Bennie’s lung problems started, so that week may as well have been written off all together in terms of my ability to participate in life. She moved less and differently than Bennie, so that made me worried. I had such nausea and that made me worried. I didn’t have my bloodsugars in such tight control and that made me worried. When talking to my therapist I said that to me, this pregnancy felt clinical rather than maternal. Like I had to protect my heart in order to keep it safe from too much connecting, from too much love. Medical facts I could handle. Maternal love I could not. I became obsessed with reading about every potential we could face…what might happen? If I knew about it, it wouldn’t be as scary. At least that’s what my brain told me. I understand now, looking back, it was very much how I had to deal with Bennie’s life…learn, cram, try to understand all the equipment, all the treatments, all the tests. In my experience as a mother, so much of how I understood my child was through WebMD or asking my medically minded husband what the hell was going on. This is what I know. This is what I understand. This is how I can process the daily life growing of this new person, because if I let myself jump in with my whole heart, as I had with our son, I don’t think I could pick up the pieces this time. It would be too hard.

We had extra appointments at 20 weeks with specialists…they talked to us about genetics and spent long moments looking at ultrasounds. They shook their heads and said, well since we don’t understand what happened the first time we cannot tell it it couldn’t happen again…we can’t see lungs on ultrasound, but the blood flow looks good…we’ll see you back in 3 months and double check. A punch, a push in the gut because once again it was a reminder that we are not in control. This time, control seems paramount. It seems necessary, like breathing. I NEED to know things are going to be ok. I need it like I need air. The panic that rises if I let myself fully embrace the lack of control is debilitating and mind numbing. The strength of it overwhelms.

So very often I have thought of my grandmother, who lost a son to toxemia in the 1940s. He was her first born. He didn’t get the chance to live. She never even got to see him. My grandfather did. It was something she never recovered from. She was closed with her feelings…because, I think she just couldn’t let herself be that hurt again. She just couldn’t survive it. I completely understand that. I am sad for her, that she never realized that a few years later, she had a daughter (my mother) who could only fill her broken heart up…but instead, she forced the need for perfection and the need to fulfill the lives of 2 children onto one. That was hard. I think about the similarity of our stories and wish and hope that I can find my way past my fears and make sure that I don’t do that to my daughter. It was not that my mother was not loved…oh, she was loved immensely. But how do you have a living child and not think of the one who died? How do you make sure that you honor the lives, the joys, the individual talents, of both without letting the lost overshadow the living? It’s a hard question. I have no idea. I suppose like everything else, we’ll figure it out as we go, the best we can.

My husband is very calm about the whole thing…I told him one day, “I need you to freak out! I need to know that I am not alone in this crazy…this unsettled fear and worry! I need that.” And he said, “But Amy, we don’t get to decide. We just have to trust that it will be ok.” At that moment, I wanted to punch him. But I realize that it is a wonderful thing that he can be so full of faith that he can do that. I suppose I am envious of that in many ways. I also suppose that one of us needs to be calm so that we can make it through. I appreciate that he is…and hope that I can be more so as we get closer. But I’m not holding my breath. This is the way it works in grief, in life…everyone must deal with it in their own way, in their own time.

In the last months, I’ve allowed myself a little hope…a hope that she will be healthy and come home. A hope that my nights will be sleepless for joyful reasons instead of sorrow. A hope that the nursery will be full of noise and bright, life filled moments. It’s a harder hope to conjure this time. It has lots of dark spots surrounding it. But there is also the bright light of this little girls big brother, who shines all around. I have thought so much about this idea of a “rainbow baby”…this thought of beauty after a storm. I get the thought. But honestly, I really think for me the most alive I have felt since late September has been at night, when we have walked or sat outside looking up at the stars. The quiet, the peace, the calm of that made me come back to life. So, in many ways, this new little person to me feels like a starry night, the end of a busy day and the start of a peaceful evening. Not too bright, like the sun, but soft and new and beautiful. I hope as we go forward I can keep that peaceful and connected feeling…that those moments begin to overshadow the worry. It seems there are more of those moments than panic now. That is good. I don’t know if the connection, that brave, wholehearted pull, will ever be as carefree or easy as it was with Bennie. But I do think it will still be strong and full of grace. I can live with that. She can live with that. And we’ll keep taking those deep breaths that Bennie needs us to take for him. To fill up with life. To realize the gift of that life, every second of it. Rainbow or star, either way.