I was driving home last night, or rather, to our home away from home, lost in thought about our life (as usual). I was getting close, anxious to get back to eat and see Ian. He left work so late that by the time he called to say he was leaving, Luca was falling asleep. So he went directly home instead of meeting me at the hospital.
I felt down, as I normally do when I leave the hospital. So I was singing along to music that was turned up too loud. I was in the left hand lane of the busy road where people drive over 50 mph. I happened to see something move in the middle of the grassy median.
A baby deer. I glanced around to see if any mama was with the baby. But the deer was all alone, eating at a shrub. Clearly much too young to be alone.
The next thought in my mind "just like Luca."
Instantly, the guilt washed through me. What a horrible mother I am every time I leave her at the hospital. Logically, I know I cannot be with her all the time. And I know she is not really alone since she knows every nurse so well.
But the emotional part of me, the mama in me, thinks that because I do not sleep there, maybe she does not even feel like I am her mom. Maybe she thinks I am just the person that comes to keep her company everyday. Will she suffer and not be capable of having true emotional bonds because I am not with her overnight? Is she suffering already?
All of these thoughts played on repeat once I saw that deer, all alone. Stupid I know. But real.
The logical part of my brain kicks in, reminding me that every night nurse reports that she falls asleep within 10 minutes of me leaving, and that she sleeps through until the next morning. She does not wake up for her diaper to be changed. She does not wake up to her IV beeping. To does not wake up to her monitor monitoring her vitals beeping occasionally. She does not wake up every 4 hours for vitals. She sleeps through almost all of it. And if she does wake up, she goes back to sleep almost immediately. I would not stay asleep for all of that. I would be awake. I would actually probably disturb her sleeping MORE because of tossing and turning on a creaky chair while I try to sleep, or when I have to pump, or go to the bathroom. She associates me leaving with it being night-time, time to go to sleep (much like she would at home when we turn off the lights in her room, place her in her crib, and leave her to sleep).
But no matter how much I try to justify that to keep going and being put-together and continuing to love and care for her during this crazy journey that I need to sleep, I cannot wash away the guilt that aches through every muscle in my body. The guilt that aches in me every time I am not with her. It does not go away. It is ever present.
I had never experienced that type of guilt until I had Luca. Sure I feel guilty for various things in my life - but this type of guilt is something that never escapes. Guilt that she has this disorder. Guilt that she has to endure so much. Guilt that she may never have siblings. Guilt that she will never have a "normal" life. Guilt that I cannot make things better. Guilt that I cannot be with her all the time.