I guess sleep has been on my mind since we are now sleep training Oscar. And I can’t help but remember how it all began….
Sleeping is a challenge for any infant. We were lucky that our daughter Olivia slept through the night at 12 weeks old. I remember thinking after Oscar was born “we just have X number of weeks to go” (until the 12week mark, thinking that Oscar would be a good sleeper like Olivia). I was wrong! Oscar has never been a great sleeper.
At 8 weeks old Oscar was put on phenobarbital (a narcotic that made him very drowsy). He would get this medication at 7:30pm and crash immediately after. We would keep him in his clothes so that we could wake him up at 10/11pm, change him into his pajamas and then offer him more milk before going to sleep ourselves.
Then at 4 months old his seizures “broke through” his medication dose and we were back at The Hospital for Sick Children. Eventually we were discharged and Oscar was still seizing about every 2 hours. I remember asking the neurologist, “How am I supposed to sleep?” and she said that it is amazing how parents have an instinct and they “just know” when something is wrong “you are your best baby monitor”. I had no confidence that this was true. I had no confidence that I would instinctively know and wake up if something was wrong. Anyways, we were discharged and Oscar had a seizure on the car ride home. He continued seizing every 2 hours. How were we going to sleep knowing that Oscar was seizing in his crib!? Impossible.
We developed a night shift routine. Luckily, my parents were with us and they stayed up with Oscar until about 1am documenting any seizure activity. Then either my husband or I would get up at 1am and would be with Oscar until maybe 5am and then the other person would get up at 5am for the morning.
At that time I just couldn’t comprehend doing it any other way. I couldn’t understand (not in a judgmental way) but I just couldn’t understand how a parent could sleep let alone sleep with their child in another room knowing that they could be having seizures. I just wasn’t there emotionally. So we did the night shift for about a week and realized that it was not a long term solution. We weren’t “over” the anxiety of bedtime, but we knew that we needed to sleep.
I think it took this experience for me to learn in the truest sense that I had to take care of myself to take care of my family. It would be impossible for us to be up all night and then the next day for me to take care of our kids and for my husband to go to work. We needed to be there for our family and to do this we needed to sleep.
So, we transitioned to putting Oscar in his pack and play right next to my side of the bed (the crib wouldn’t fit). We slept like this for probably 6months. My husband started to suggest that we move him to his crib. “He will be more comfortable on his crib mattress”, “Maybe he will sleep better?”, “Maybe we will sleep better?”. I wasn’t over the trauma, I wasn’t ready. Oscar’s crib was all the way on the other side of our room… What if I didn’t hear him? What if I missed something?
I tried to think logically… the crib wasn’t that far away and I knew that it was my anxiety keeping Oscar in his pack and play. I didn’t want my anxiety to limit Oscar. So eventually I agreed. We started to inch Oscar’s pack and play across the room until he was eventually sleeping in his crib. Oscar slept in his crib in our room for probably another 6months.
The next big step was to get Oscar in his own room. I knew that this was a necessary transition. I had many talks with my social worker about this. It was a huge source of anxiety for me. She suggested that we move the crib closer to the door and to progressively move the crib down the hallway into his room. Again, I tried to put my emotions aside and think logically… if we moved the crib to the door of our room it would be about the same distance away as it’s current location. That wouldn’t “challenge” me. I knew that Oscar sleeping in the hallway was again me putting my anxiety before his comfort. So we elected to rip the bandaid off and put Oscar directly into his own room.
It is amazing to remember that 18months ago I didn’t think that I could ever allow my child with epilepsy to sleep in his own room. I just never thought I could get there. It has taken a lot of soul searching, putting my child’s needs above my own anxiety and therapy to accomplish this. It has been a long, heart wrenching journey but I finally achieved what I thought I never could. Oscar has been sleeping in his own room for quite awhile now. And it has been okay.