Sleep...the Never Ending Challenge

After Maizie recovered from her pyloric stenosis surgery at the age of two months I thought everything would become "normal" for her. That she would be a healthy little baby from then on.

One of our many hints that Maizie's health was 'off' came around the age of eleven months. Maizie was unable to fall asleep. Once she finally did fall asleep her slumber never lasted more than an hour before she would be up again. Either full of energy or crying her blood curdling screams that nothing could calm. These screaming sessions lasted from fifteen minutes to a couple hours straight. It was pure torture to watch her scream and not be able to help her. Nothing we did calmed her.
Joe and I began arguing over who was getting up with Maizie in the night. We argued over who was with her more during the day to hear the ongoing screams. Schedules were made to try and share the challenge of trying to help Maizie sleep. We tried having her sleep in bed with us, we took turns sleeping on the floor beside her crib, various music was played, lighting adjusted and the list goes on. Eventually nothing was working and our arguing intensified. There was really no fair way to share her amazingly erratic sleep schedule so we made a drastic decision. A pact was made that we would both get up with Maizie. Together. Every single time.

Of course I still became upset on occasion since I was with Maizie all day. Maizie rarely napped but had long screaming bouts. Once Joe began traveling we had to alter our deal. Getting up together worked for her first four years or so. Eventually long bouts of insomnia had to be divided up. Joe took four hours and then I took four hours. When he traveled I struggled and napped a lot once he came home.

When Maizie was doing well she was a complete joy to be with. I patiently waited for these moments or sometimes string of days to happen and was determined to be present whenever it seemed like Maizie was present with me. It was as if she was suddenly there with me and noticing me and everything was made wonderful again.

Every time Maizie was "well" I thought the difficult periods of time were gone...forever.

Time would pass and I would watch other moms with their kids and ask questions like this?

So...your baby takes naps? How long does he sleep for? Does he ever wake up and scream for hours? Does your baby throw up a lot? Is it hard to get your babies attention on some days? How do you seem so awake and with it when I am so tired with just one baby?

Eventually, I stopped asking the questions because the looks, advice and comments I got in return were too painful. It became evident that my friends were not experiencing what I was with Maizie.

There was never a moment where we had any answers in regards to sleeping and Maizie. Over the years she has had two sleep studies and neither showed anything worth while. It was not until Maizie was three years old and was unable to sleep for three days straight that the doctor's took notice.
Over time Maizie has begun to sleep better. She slept through the night for the first time when she was eight years old. Up until then she would wake up from about one in the morning and stay awake until about four and then sleep until six and stay awake all day. During this time we tried many ways to get her to sleep but eventually we stopped and just let her do what she needed to do during these hours. Sometimes she would color, play or watch cartoons. I remember baking and cleaning the house at three in the morning just to stay awake.

At three o'clock this morning I came downstairs to find Maizie sitting in her favorite chair. She had eaten an entire bag of beef jerky and three Slim Jims. The smell of the meat about sent me over the edge. Both of these foods are not allowed on her migraine diet. We allow them sparingly. I removed all the wrappers, covered her up all cozy like and encouraged her to sleep. She always says, "I am waiting for it!" I feel like I am always waiting too.

I imagine as an infant these long screaming bouts were due to the CVS? A correct diagnosis may have made everything different. And yet, with the diagnosis of CVS, Autism and her extra chromosome 6 we still find ourselves doubting. Are we missing something? Sunday was a really long day. Maizie was in intense pain all day. Monday was a bit better and today was okay as well. She seems tired though. I remember her like this as a baby. Sickness followed by a few days of not really being present in the moment. She is tired. I asked her how she was feeling this morning and she said,"Stop asking me that! You might make me worry and then it will happen." These ongoing bouts of CVS take their toll and insomnia does nothing to help.

When an infant/toddler/preschooler is screaming and in ongoing pain there is a reason for that pain. If someone is telling you it is your imagination or your child is just being stubborn or manipluting...run...run far away and don't look back. Go to the next professional and if they don't listen move on to the next. Never hesitate to fire a doctor, therapist or counselor if they are not taking your child's pain or situation seriously. People will talk about you, say you are paranoid or obsessed. Let them.