Then I had Nora. I gave birth to our daughter, Nora Marie, on November 13th 2013 via emergency c-section. I was 35 weeks and 5 days. She had been diagnosed with Intrauterine Growth Restriction and was failing in utero. She went to the NICU and we were told testing was being done to determine the cause. We were never prepared for the results. Eight days after she was born, we were told our daughter had a genetic disorder called Trisomy 13. They explained that there is no treatment. There is no cure. We were also told it was a minor miracle our daughter was still alive at 8 days old. We were told that there was no way to determine when our daughter would die, but she would die. It was unlikely she would live months, and almost impossible that she would see her first birthday.
I was trapped in a nightmare. This couldn't be real. My daughter can't die. Those things don't happen to me. They don't happen to my children. What had I done wrong? Was it my chromosomes that did this? How would we tell our family? How would we keep breathing? How do I make sure my son is being taken care of? How do I survive this? Why is God doing this to my daughter?
Thankfully, Nora was actually doing amazing and was not on oxygen, not on an iv, and not inside an isolate. She was doing everything a normal healthy baby could do. Maybe they were wrong. Maybe she would be fine. How could she be dying when she was so perfect? But even with her amazing progress, every moment with her was tainted by grief, despair, and anxiety. Every cough, or strange sound, or unfinished bottle brought with it the terror that this was it. Then she was placed back on oxygen two days after her diagnosis. They tried to be encouraging but I knew we didn't have a lot of time left with Nora. We did what we could to get her home as soon as possible, and with the help of an incredible non profit perinatal and pediatric hospice program called Peds Care, we took her home just three days after our diagnosis.
The day she came home was happy and devastating. She was hooked up to an oxygen tank when we brought her home, and a specialist came to install a gigantic tank for her. People kept tripping over the tubing. Panic constantly ensued. Nora began to have trouble breathing and needed her oxygen increased. Everyone was constantly terrified. My husband and I took shifts so that someone was always awake to watch her. Because of that we were not really sleeping at all. I was dealing with oversupply and pumping around the clock. Every day, hour, moment, and second was painful. I prayed for God to save her knowing that she was going to die. I would become hopeful at progress only to be devastated when she would decline a small bit shortly after. Thanksgiving was just a few days after she came home. We stayed at the house and had a small intimate meal. Nora began having episodes where she wouldn't breath properly. We had to call our nurse three times. That night, I took most of the shifts to sit with her because I was so afraid she would die if I fell asleep. I was so worn thin. I was so exhausted. I was tired of the constant stress that entails waiting for your baby to die knowing you cannot to do anything to help her. That night I reached a breaking point. I cried. I cursed. I yelled. I begged God to save my daughter. I begged God to end her suffering. I begged God for it to be over. I couldn't handle this. My husband couldn't handle this. Our family couldn't handle this. And our son was being left behind because of it and he didn't deserve that.
Nora died the next day. She died in mine and my husbands arms. She died surrounded by our best friends, family, and her Peds Care nurses and social worker. She died knowing we loved her more than anything. And she died not understanding what was happening. We had to watch our daughter cry because she couldn't breath. It probably hurt. It probably scared her. And we couldn't stop it. All we could do was sit there and hold her and cry and apologize. All we could do was tell her she was loved more than anything else in that moment.
And then my daughter was gone. And so was I. I cried. I screamed I held her tightly as if my life literally depended on me maintaining physical contact with her body. I couldn't let her go. I needed to keep her with me. I wouldn't be able to keep breathing if I let her go. But I had to let her go. Our nurse and social worker comforted us and helped us make memories and preserve things like her handprints and footprints. They helped us make arrangements. They helped me change Nora's diaper and put fresh clothes on her. They let me carry Nora out to the transport van. I kissed her and told her I was sorry. I told her I loved her. I told her I would miss her. I told her I would never be the same. Then I laid her down in the transport van and I never saw my daughter again.
Since then, we have had her memorial service. We have scattered her ashes in a special place. We have gone to counseling. We have mourned. We have healed. We have mourned some more. It has been almost a year since we met and said goodbye to our daughter. I'm still not the same. I still have a hole in my heart. I still despair. I still miss holding her. I still sleep with her favorite blanket. I still wear her baby lotion from the NICU. I still cry when I see babies wearing something she wore. I still cry when I hear the song I always to sang her while I was pregnant. I cry when I see a pregnant woman sometimes.
Being a birth worker through all of this has been one of the most difficult things and one of the most joyous things for me. It reminds me that birth does not always end in tragedy. Miracles happen. Healthy babies happen. Peaceful birthing experiences happen. And when they don't happen, I am equipped to give that family a level of empathy that most other people are not capable of offering. I know what it is to put the heavy coat of my grief on daily. I know what it is to look at the empty nursery and know that your baby will never sleep there again. I know what it is to pack up your baby's belongings in a neat box after her nursery has been cleared out and the items donated. I know what it is to struggle at simple questions about how many children I have. I know what its like to suddenly be paralyzed with grief, to see a baby hat or hear a song and crumble at the weight of the loss you feel. I know what it is to have your arms literally ache to hold your baby, with no relief in sight. I know what it is to lose.
So friends, be patient with the bereaved mother. A mother's grief is never ending. It is eternal. Be gentle with the mother who mourns the loss of a part of her. She is fragile while she is strong. She is despairing while she is smiling. She is dying while she continues to courageously live.