Sleep that knits up the ravelled sleave of care
The death of each day’s life, sore labour’s bath
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.
~William Shakespeare, Macbeth
When Caitlin was two, she learned to climb out of her crib. She would totter in to our room in the middle of the night, just to talk or cuddle, or probably just to demonstrate to us that it was she, after all, who was in charge. We quickly graduated her to the big girl bed, with the pink bedspread and the plethora of pillows and stuffed friends. It was fairy tale sleepy-time. Either my husband or I would crawl into bed with her each night to read some stories. Then there would be a few short prayers and thankful remembrances about the day, some kisses and hugs, a quick tuck and off we went. She’d be off to dream land – and we’d be off to some quiet adult evening time. “Welterusten” I would whisper – which in my mother’s native tongue Dutch is translated as “Good Night” or perhaps “Rest well…” And we almost always did.
However – arthritis changed all of that. And it’s really only now, after ten years, that we have finally have reached a point of something resembling what “normal” kids do… and I am able to look back and marvel on this warped, rocky road we have travelled with the Sandman.
In the beginning, we simply could not bear to leave her alone. When we got home from the hospital after her diagnosis, it just didn’t seem possible to put her into her room all alone. She would be burning up with fever and unable to stand without help. Still shaky with the fear of potentially losing her, we kept her close - she slept with us for weeks. When we finally put her back in her big girl bed, there were so many nights of severe stiffness that she would call out to us to carry her to the bathroom, or beg us to just come in and rub her knees or ankles or back…. it seemed like nothing would be normal again.
We moved to a new home a year into arthritis, and spent a great deal of time letting Caitlin choose her new “big girl” bed. She had a baby brother on the way, and we wanted something special that would carry her into an imagined future of sleep-overs and fun. She chose a beautiful light pine bunk bed… and we chose another pink comforter. I remember lying with her on that bottom bunk and it felt safe, like a little home, a little cocoon. And yet, she was still unable to be comfortable at night. Soon the bedtime stories were not enough. Dave would read to her… and then she would ask for me to come and sing to her. Song after song, I would kneel next to her bed and sing – Eleanor Rigby, When I’m Sixty-Four, Yesterday… I would exhaust my Beatles catalogue and then move on to Fleetwood Mac, The Mary Poppins soundtrack… maybe throw in some blues. “One more” she would beg – until I would have to pull myself away. Sometimes, this would devolve into her crying – me getting angry and insisting that she just go to sleep!!! and then hugs. I would often end up waiting there until she fell asleep. It became more and more clear that she just did not want to be alone – and she would devise almost anything to get us to stay.
This reading – hour-long lullaby-fest morphed when Caitlin was about six or seven. She had a friend at school whose mom was hyper-vigilant about protecting her – and her methods included telling her daughter to be aware that anybody might come and snatch her at any moment. This began for us, a looooong period of night-time anxiety. She heard noises outside. She would insist that we check the window locks and re-check them. Even on warm, sultry evenings she refused to leave her bedroom window open. Bed time became an endurance test – how many times would she come out each night? How many nights would we grab a flashlight and walk outside just to show her that nothing was there? We had a police officer, who lives across the street., explain how safe our neighborhood was. We NEVER watched the news or listened to it on the radio…. or even left the newspaper around. And still, each night, there would be crying and begging. The compromise during these years was that Dave agreed to move her to my bed after he got up for work. He gets up at 3:30… so he would go and pick her up and carry in, and tuck her in next to me. The promise of that was the only way we could coax her into going to sleep each night… and sometimes, the threat of losing that privilege was the only tool we had to get her to return to bed.
The prednisone insomnia began around this time as well. And that was flat-out hell. For those in my age demo, you may remember the famous beginning to “The Incredible Hulk” when Bill Bixby goes from being a mild mannered guy, to a giant, angry, muscle-bound hulk of a monster. That’s what it was like with Caitlin at bedtime. She would throw things and have tantrums, she would scream that we did not love her…. and we would vacillate between feeling such sympathy for her, and worrying that if we did not set some boundaries, she would grow up to be a not-so-nice person. On the nights that we were able to have her stay in bed until she fell asleep, I would often find her out on the couch in the middle of the night, asleep in front of TVLand. Or she would turn on the hall light, open our bedroom door, and just stand there whimpering until we woke up. Then she would turn around and go back to bed, crying, until we went in to her.
This transitioned into the period when her hips began to swiftly deteriorate. By the time she was nine, we could not really manage to get Caitlin to stay in bed at night. The fact that it seemed contrary to our thoughts of “normal” to have our child want to stay on the couch, or be in our bed every night was only highlighted by the total normalcy and easy-going sleep of our son. Each night, at the same time, I would read to him and tuck him in and he would stay there – fast asleep – until morning. He was, in essence, exactly what I imagined Caitlin would have remained if Arthur had never entered the picture. His normalcy added fuel to her anxiety… and though we were careful to never compare them, she would throw it back at us that we didn’t love her because she couldn’t sleep.
We were willing to try almost anything. During this time, we sought help from a psychologist. We read books about anxiety and made "worry lists". We tried valerian root to help her sleep – and she drank sleepy time tea. We tried melatonin – all of these things with an OK from her doctor. She had massage and accupressure… we tried noise machines. We took down the top bunk (sadly, I can count on one hand the number of times she slept up there – ladders are hard on little swollen knees). We bought her a new, top of the line temperpedic mattress. We learned about and practiced good
sleep hygiene., but nothing seemed to help. The lack of proper sleep was a vicious cycle – that led to more pain, more anxiety, and less ability to handle both. I was becoming desperate – and even considered putting a TV in her room, as the sound and images seemed to calm her – but I simply resisted, because I worried she would never sleep at all. I did let her have an ipod, and knew she listened to music as she feel asleep…. usualy a playlist with a time that would complete and shut off after a certain point.
By the time Caitlin got around to her first hip hip replacement – we were both sleeping on the couch. I would need to stay awake until she fell asleep – or she would simply wake me up again. Each night usually ended with her falling asleep around 11:30 or 12…. and sometimes, she would wake up several times. Some nights, we would end up screaming – me demanding that she go to sleep - her telling me I might as well put her up for adoption. Sounds like fun, right? Sometimes, I would manage to sneak into bed – and others, Dave would simply move us to bed when he got up for work. Five hours of sleep made me grateful ... and it seemed like there was no light at the end of the tunnel.
After the first surgery, it was like night and day with Caitlin. She was a totally different person. And while she was not yet ready to head off to bed on her own, she made huge progress. Generally, she would fall asleep on the couch – and then I would wake her and send her to bed. She would go willingly. I generally needed to stay up another half-hour, so she could see and hear me as she feel asleep…. but then I could head off for some restful slumber. The difference it made in our family was remarkable! I was so happy with that progress, that frankly – I didn’t rock the boat by pushing for more. When the second surgery came around, I mentioned that afterwards, maybe she would be comfortable going to sleep in her own bed. But we returned to the ways of falling asleep on the couch – me waking and moving her. It was such an improvement over those two terrible, insomnia-anxiety hell years that I decided not to push my luck.
At the end of the summer this year, when she returned home from visiting her grandparents – Caitlin got up from the couch and said “I’m going to bed,” gave me a hug, and went to her room. Just like in books. Just like in movies. Just like I always imagined. Just like “normal”. And she has been doing it ever since. What an amazing sign of maturity and progress!!! I mean, I used to comfort myself that surely, she would not still be demanding I sleep on the couch with her when she was getting ready for college? Right? But sometimes, I was not so sure…. And now, every night, we have some quiet time together after all the boys in our house are dancing with the sandman, and then she gives me hugs and kisses and slips off to bed. I sneak in and stare at her in wonder as she sleeps so peacefully, looking more like my little girl than the young woman she is becoming. I see her next when I wake her for school, as she grunts and swats my hand away. Again, so totally normal I have to love every second of it.
I have always loved sleep. There are stories of times in my childhood, of frantic searches to locate me ending with me found napping on my own accord… having crawled into bed without anybody cajoling me. Just taking a snooze because I wanted to. To this day, I don’t think there is anything more luxurious than a wonderfully cozy nap… and I have been mostly blessed with an absolute lack of impediments that prevent me slipping quickly and peacefuly into slumber at the end of the day. So the fact that arthritis has meant a severe upheaval to the sleep patterns in our home has been a bitter pill to swallow. But I understand from so many other parents, that this has not been unique to us. This war on sleep is common in juvenile arthritis.. and I know plenty of parents who are sleeping on the couch, or making room in their own beds in the hopes of getting some much needed rest.
In the end, looking back, I can see it was all a process. It was all a necessary part of our journey, to her growing up and being more confident and mature in dealing with her disease. All of the anxiety, the tantrums, the wheedling and dealing were all a mask, placed precariously over the severe pain she was enduring. It was part of us getting her to a point where the pain was not overwhelming. I’d like to think that in the process, I learned some more about patience, and empathy, and compromise, and that she learned something about trust, and strength and overcoming challenges. I still wish I would have been able to know, while I was in the middle of that sleep deprived, fear-laden nightmare - that it would work out. That, one day, it would all be OK – and we would all sleep tight again. It really will be OK again.
Welterusten!
