dear matt and stacey,
i’m looking forward to seeing the two of you and mom. it has been far too long since my last visit but as you might imagine it is hard for me to get away.
i am writing to tell you that i am not going to offer to sleep in mom’s room—to help her get up in the night—the weekend i am visiting like i have done during my last several visits. i want to explain and i hope, and believe, you will understand.
although calvin’s daytime seizures have been at bay for several months, they have migrated to the nighttime. the past few months we have observed calvin having grand mal seizures in the middle of the night every five to nine days on average. recently, calvin had four seizures in one night. on the nights when he does not have seizures he is often restless and sometimes wakes at 3:30 or 4:00 am and doesn’t go back to sleep. on those nights i am up every thirty to sixty minutes tending to him and often i don’t go back to sleep when he wakes early.
this chronic sleep deprivation is nearly impossible to remedy and it has been my reality for most of calvin’s life with little to no respite. besides a weekend trip to new york five years ago, since then the only time i’ve taken away from calvin is to visit you and mom (and sometimes seti during the same trip) and to attend my class reunion in seattle. these are the only times i get decent, uninterrupted sleep. it is taking its toll on me and i see no end in sight.
i am fairly sure that the two of you don’t get much respite away from mom, either, at least not as a couple. this is why i think you will understand why i am hoping to spend my visit with mom and you as a kind of respite—a rare one. i have no other plans but to focus on mom and you during my stay.
hope all is well. see you thursday night january 8th around 10:30 pm. let me know if one of you will be awake or if you want to hide a key for me to get in.
love,
christy
i’m looking forward to seeing the two of you and mom. it has been far too long since my last visit but as you might imagine it is hard for me to get away.
i am writing to tell you that i am not going to offer to sleep in mom’s room—to help her get up in the night—the weekend i am visiting like i have done during my last several visits. i want to explain and i hope, and believe, you will understand.
although calvin’s daytime seizures have been at bay for several months, they have migrated to the nighttime. the past few months we have observed calvin having grand mal seizures in the middle of the night every five to nine days on average. recently, calvin had four seizures in one night. on the nights when he does not have seizures he is often restless and sometimes wakes at 3:30 or 4:00 am and doesn’t go back to sleep. on those nights i am up every thirty to sixty minutes tending to him and often i don’t go back to sleep when he wakes early.
this chronic sleep deprivation is nearly impossible to remedy and it has been my reality for most of calvin’s life with little to no respite. besides a weekend trip to new york five years ago, since then the only time i’ve taken away from calvin is to visit you and mom (and sometimes seti during the same trip) and to attend my class reunion in seattle. these are the only times i get decent, uninterrupted sleep. it is taking its toll on me and i see no end in sight.
i am fairly sure that the two of you don’t get much respite away from mom, either, at least not as a couple. this is why i think you will understand why i am hoping to spend my visit with mom and you as a kind of respite—a rare one. i have no other plans but to focus on mom and you during my stay.
hope all is well. see you thursday night january 8th around 10:30 pm. let me know if one of you will be awake or if you want to hide a key for me to get in.
love,
christy
 |
| Mom, March 2013 |
Christy please keep writing about Calvin's progress as you have no idea the number of us with similar challenges from all corners of the world who draw strength and guidance from parents working tirelessly particularly with the hemp based treatments.
ReplyDeleteOur 20 mo girl has intractable epilespy and has been on the CBD rich oil (20mg/day) for around 3 months now. We have slowly but surely seen improvements in her alertness, focus, seizure frequency and intensity (reduced), improved sleep (all night 12hours generally now) and better feeding (less likely to aspirate). It has taken time but the improvement is definate. Feel like we are just getting to know our little girl. Unfortunately in Australia, laws are tough on cannabis so THCA experimentation really ratchets our risk as we currently are obtaining our CBD medication 'unconventionally'. I think you will find the CBD will really help on the sleep front. We are now only on 2 AEDs and have begun to taper the Topomax and then hopefully finally the Clobazam both of which I am sure are the reason she developmentally is a year behind (not crawled yet). Her balance is terrible. Sometimes its hard to imagine her ever crawling let along walking but our renewed hope is with the CBD oil as the AEDs don't offer any long term hope other than snippets of control with large amounts of damage.
Awww. Your mama is so sweet, and you look just like her! I am glad that you are getting some time to be with her, and I'm even more happy that you're looking out for yourself, too.
ReplyDelete