Friday, March 12, 2010


we've made it to spring here in the east and it couldn't have come soon enough. my next post was intended to be this inspirational talk by Aimee Mullins. i watched it with tears rolling down my cheeks, and felt hopeful by the end that i, too, will make the best of the challenges that life has set before me.

then tuesday came. darn tues. Wyatt had another febrile seizure, but this time he stopped breathing. for a long time. crazy sounding words were thrown out in the ER, like intubate and resuscitate, call social work and other exclamations i, luckily, have blocked out. the breathing tube came out relatively quickly, and he has been breathing fine on his own for over 24 hours. we are likely going home tonight. we have been through this before. fever hits, sometimes a seizure, trip to the ER, a few days inpatient, an antibiotic, and home again. this time feels different. there are conversations about a "plan". mom, dad, do you have one? let's think about one. etc, etc.

i'm not sure i'm ready for a plan. planning doesn't always seem to work out for me. i planned to have a soccer team of kids. i planned to go on camping trips with my kids. i planned to braid their hair and play dress up. i planned to color with them and scold them and wash the dirt from their boo-boos. i know that this type of plan is different. but i never "planned" that parenthood would come with this kind of choice. maybe it will all be for nothing and it will never be put into place. but adversity like this seems too much to plan for, today anyway.


  1. The love, love, love the talk by Aimee Mullins, I have watched that several times recently and sent it to others.

    As for the plans...I know it is so hard. I have a hard time articulating things for Brayden...because frankly, I do not know! There is no guide or What to Expect When... book. We have been asked many a times about DNRs, etc. and I tend to live in denial.

    One of our doctors ordered oxygen with a mask for us to have at home, once those big seizures start then we do not have to wait for the EMTs of ER. Just an idea.

  2. hi leah
    one of the things i hated about going into hospital was that they woud always ask the question "would you like us to treat harvey or would you like to let nature take its course!!!" i hated hated hated this question and no parent should ever ever have to be asked this. i made some decisions about the levels of intervention but decided with the hospital staff to keep open conversations going each step of the way with treatment and begin always with the least invasive and then see if that works before having to make any other decisions. but poo to that subject !
    i also watched aimee and thought she was indeed amazing. the hospital was always focussed on what was wrong with harvey and what he couldn't do and his therapy sessions were always focussed on what harvey could do. for this i am forever grateful and always left therapy with a skip in my step, it was also the place where harvey first smiled too.
    i have just found out that harvey didn't have pchtype2 from our genetic testing, this means there is nothing to test for in any subsequent pregnancy's and i will be running blind into them , not knowing if its just me as a carrier and all my kids will have the same condition as harvey or whether he was a glitch in the matrix. i'm pretty bummed about this. i will still try though and have constant scans i guess, i'll have harveys paed on board as well as an obstretician and a genetic councellor but they can't prevent anything, just keep me as informed as i can be i guess.
    i am for now living vicariously through you and gail so please keep blogging as hard as it may seem sometimes, writing is good and i am here for you. photos too please of your very cute little cowboy.
    i hope wyatt is safe at home now with you and ben, and that you are doing as ok as you can be, lots of love and warm hugs, om shanti anne xxx

  3. thanks for keeping us all updated, Leah. I'm sorry to hear about another hospital trip for Wyatt. I hope you are hanging in there. Let me know if you'd like to get together to just talk, hang out, or if there's anything I can do to help you. take care.