This post is going to be harder for me to write than my daughter's birth story, Uncertain Blessings.
Sure, it wasn't easy to talk about how my baby was diagnosed, in utero, with a potentially lethal neural tube defect (encephalocele) and a Chiari Malformation. It wasn't easy to talk about the fear, and later the hope, that I felt as I went through the remaining 18 weeks of my pregnancy. It wasn't easy to describe how I felt as we waited to see if our baby girl would survive her birth, but it was a little easier to talk about all of that because she survived.
She not only survived, she is kicking ass! Born four weeks early, she had neurosurgery at 11 days old and just 3 days later she went home from the NICU and became the star of my world. Even though she was on C-PAP for her first three days in the NICU, and she didn't start breastfeeding until she was five days old, she was a champ and nursed until she stopped on her own at 13 and a half months.
She was a little late to roll over, but she could sit unassisted at five and a half months. She started crawling a little late at 13 months, and at 16 months she has only one real word, but she can sign a few words, and point to more than 10 of her body parts!
Her words may be a little slow to come, but she is amazing! She has no serious medical issues related to the encephalocele or the Chiari malformation. She is a great eater, a great sleeper, and a super cool kiddo. She loves books and music, and she recently began to take interest in playing with our super lazy dog, Samson. In short, life is good.
So why am I still scared?
We didn't move Lily into her own room until she was 8 months old. There weren't any medical reasons behind this. Sure, I was still breastfeeding, but that is not why we kept her in our room for so long. She stayed with us because I was not ready to let her move across the hall. I wasn't ready to let her out of my sight.
I was scared to death that something would happen to her in the middle of the night, and I would lose her. I wanted to keep her close so I could literally hear her breathing. So I did, for 8 months. I would only agreed to move her if we could buy one of those stupidly expensive video monitors. My husband agreed because he knew that if she slept in her own room that we would all get more sleep. Of course, he was right. When we moved her to her crib, everyone slept better, but I still worried.
At first, I would wake up every couple of hours in a panic and I would check the monitor. Truth be told, I did this for several months when she was still sleeping in our room. I would fall asleep and then I would suddenly remember, "I have a baby! What if she stopped breathing? How could I be so irresponsible as to fall asleep?" I would jump up and gently lay my hand on her back to make sure she was breathing.
Now that she is in her own room, I still wake in the middle of the night and try to focus my eyes enough to see her breathing on the monitor. If I can't see the gentle rise and fall of her little chest then I quietly creep into her room to either listen for her breathing or lay my hand upon her to check. Sometimes I do both.
Here is the confession that I have to make, the reason I am writing this post.
The thing that I have never said out loud to anyone.
Every time I lay my hand upon her small body I almost expect that, this time, she won't be breathing. I prepare myself for the worst: I have lost her. She is gone.
Wow, just reading that scares the shit out of me. Why do I think that? It drives me crazy. In some ways, I blame my mother, she always thinks the worst things are going to happen to the people that she loves and it seems she has passed that irrational thought process down to me. She says she is just trying to prepare herself for the worst, but I don't buy it.
So why do I feel this way? I wish I knew.
Maybe it's because my dad left us when I was young, so I expect to be abandoned. Maybe it's because I lost so many family members and attended countless funerals before I was even a teenager, that I expect everyone I love to die. Maybe I am slowing losing my mind. I don't know why I think the worst, but I do, and it sucks.
In the weeks before I got married, every time my husband left the house without me I prayed that he would make it home alive to me. I had a completely irrational fear that the love of my life was going to die before I could marry him. I still worry about him when we're not together, but not as much as I worry about Lily.
I just wish it would stop. I wish I could get the image of her lifeless body out of my head. I hate that I feel this way because she deserves better. She is such a fighter and I KNOW she is a fighter, but I can't shake this feeling. I don't know how to stop, and I really wish I could because she deserves better.
My husband deserves better. I deserve better.