Walk a while with me...see how long before you stop walking

Today went like this:

5:30am- Dad up and gone to work. Mum up, finished breastfeeding (for the 4th time) and into bed with Ryley to put him back to sleep.

6:00am- Ryley up. Having seizure after seizure. He can't stop.
Braeden up. Heard Ryley, realised Mum wasn't nearby, he bounces on the bed.

6:15am- Medicine time. Hope that settles the seizures. Why are they so bad today?

6:30am- Make Braeden some toast. Organise Ryley's PEG feed.

6:50am- After rearranging the furniture (Ryley hates it if we all aren't sitting the way we are meant to be) start PEG feed.

7:30am- Finish PEG feed. Switch off news. Start Playschool DVD. Head for shower with Braeden following.

7:45am- Out of shower. Braeden has put my towel in the bath on top of the wet facewashers. Towel now wet. Me freezing. Braeden slamming door because Ryley wants to come in. I open the door and make a dash for the bedroom and a dry towel.

7:50am- Braeden and Ryley now in bedroom. Playschool tunes still going-why am I the only one singing? Braeden pulling clothes out of draws. Ryley up on the bed looking out the window. Me, dressed. God knows what I am wearing, and luckily I don't care.

8:00am- Been up for not even 3 hours and am exhausted. Day has barely started. Change Ryley's nappy. 1st of many. Battle to dress his PEG site and to dress him. Still having lots of seizures. What is wrong today? He can't seem to help it. Braeden trying to put calmoseptine on his tummy too. Awww cute-but stop it! Why aren't they watching playschool?
Braeden has a mammoth breastfeed.

8:30am- Dress Braeden. Put washing on. Hunt around outside for some wood for the fire.

9:00am- I feel fuzzy headed. Oh yeah. Haven't eaten yet. Coffee will do. Pile the kids in the car and go get some coffee. Large. Skinny Cappucino. Aaah. Feel better,

9:30am- Going the long way home. Braeden falls asleep. What?! Oh great. Ryley loving the car so I keep driving. For like, an hour.

10:30am- Arrive home. Braeden awake and grumpy. Ryley annoyed we are home. Still having seizures. Get them some sultanas and let them go outside.

11:00am- Ryley annoyed. He wants to go on the trampoline. I tell him it is too wet. He flops onto the wet muddy grass and has seizures. Braeden tears around the yard chasing the dogs and tripping over. Next door neighbour pops his head over. Chat to him. Braeden finds an old mobile phone and starts a long conversation. Ryley wanders over but tries to use this opportunity to pull me over to the trampoline. I tell him no, later. He pushes me away in disgust and walks over to it and climbs up. Has seizures because no one else is up there with him.

11:30am- Lunch time. Change the boys out of their wet muddy clothes. Change Ryley's 2nd dirty nappy for the day. Organise PEG feed. Make Braeden lunch.
Ryley has seizures the whole time I am feeding him and makes his "whiney" noise. I don't have playschool on tv. I am not sitting in the right spot.

12:00pm- Make myself some lunch. Braeden eats most of it. Decide I will take them for a bike ride. As soon as I tell them, Ryley follows me around pinching me and pulling on my pants and having seizures and doing his whiney noise until I pick him up and sit him on the couch and tell him not to move. He doesn't listen. He keeps going. I finally get everything we need and I get them into the bike trailer.

12:30pm- Head up the road on the bike. Ryley not happy. He can't see any cars yet. Braeden crying. Ryley is pushing him. I keep peddling.

3:00pm- After riding up to the Lake and back (20kms) I am ready to fall in a heap. Boys are tired. Braeden helps me bring everything in. Ryley wants to go on the trampoline.
Snack time though. I get Ryley's PEG feed ready. Get a snack for Braeden. Good timing Playschool is on ABC1.
Ryley not happy. Having seizures. Doesn't want to be inside.

3:30pm- Ring David. Please don't be late. He is in Melbourne. Doing his best.
Take the kids outside and put them on the trampoline. I jump on. Ryley happiest he has been all day.

4:40pm- David arrives home. Ryley and Mum still on the trampoline. Braeden running around with the dogs.

5:00pm- Mum ducks in to the study to check her emails. Closes the door. Ryley at the door trying to get in. Dad and Braeden start cleaning up. Mum decides it is take away for tea tonight.

5:30pm- Kids in the bath. Mum goes to get McDonalds.

5:45pm- Mum back home. David finished washing kids. Mum battles again with Ryley to get dressed.

6:00pm- Mum and Braeden sit down to eat together. David takes Ryley off to bed to give him his PEG and read a story.

6:20pm- Ryley sound asleep. Braeden still up and mucking around.

7:45pm- Braeden asleep.

8:00pm- Mum finally checks her emails and writes this mammoth post. Then off to do washing and get organised for tomorrow.


  1. What can I say? You are a valiant woman, Anna! I am overcome with amazement at the way you four cope with your very difficult lives. I am so proud of you. xxxxxxx

  2. You can do it and we are praying for you. Thanks for being such an amazing Mom and for living your days with love for your boys.

  3. Wow - what a day. I can't believe you managed a 20km bike ride in there as well!! If its any consolation my kids had pizza for dinner last night! I hope you were able to get a good nights sleep.

  4. is a long long day... hello from Argentina


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