Be prepared
When I was younger I was a brownie and then a girl guide. Our motto was always "be prepared". Now this is something I've carried on through my life. I try to be organised and ready for events and experiences way earlier than I need to. The biggest thing I wasn't prepared for though, was becoming a mummy to a child with special needs. We didn't know anything was wrong with Ethan until he was 4 days old and even still we didn't know what the future would bring for Ethan. Being mummy to a child who needs 24 hour care has taken being prepared to a whole new level. I have to be prepared for every eventuality all the time and it's a full on job!! Ethan relies on life saving medicines each day so these need to be ordered in time to keep him alive. Ethan's pads need to be ordered and extra will need to bought as the amount we get allocated don't last the full three months their supposed to. Ethan's syringes and milk need ordering monthly too. Keeping monitors and pulse guard equipment charged is essential for each day. Ethan is dairy free so he has a special shop done for him monthly to ensure he doesn't run out of food and snacks. Meals need extra planning to ensure he's fed with the right amount of nutrients to keep him healthy. Ethan has lots of appointments that I need to be prepared for. Booking him in and out of school and making sure I don't forget where I'm supposed to be on each day. My diary is full to the brim every day!! I write a lot of notes and spend my life planning. Ethan can get ill at any moment or can have a seizure which can take us out of action for a few days. This happens most months so it's important to be prepared daily for these events. Don't get me wrong as prepared as I can be for these events sometimes it's just not enough! When we go out for the day we need to pack food for the day as Ethan has to eat on time no matter what were doing. He is dairy free and on a soft diet so we need to ensure he has food with him. We need to carry medicines and rescue meds and his vns magnet for seizures. He needs pads, lots of spare clothes clothes and pyjamas ready for night time. We carry water for water feeds and syringes for water and meds. We carry blankets to keep Ethan warm and to change him on. Planning a day out is a big mission. Planning a weekend away is just crazy!! Going away from home means doing the same care wherever we are as if we were at home but without all the equipment! We need to ensure lists for the weekend are planned well in advance. Ethan's wish weekend is the first weekend in over a year that we've taken him away and that was only to my parents. I have been planning things for months to ensure he has everything he needs and access to all he needs for the weekend. We are travelling by train and will look like were going away for a year but we will need an awful lot of things to keep Ethan warm, comfortable, fed, watered and medicined up! I really notice the difference between packing for Dakota and Ethan especially when we go away. This next week will be making sure the home is ready for us to go away and bags will be packed well in advance. The trouble we have is Ethan could fall ill or have a seizure at anytime so being prepared is essential so we don't miss the important events. Christmas is already 90% done in our house because I need to be ready. It might seem over the top but all this planning is essential for Ethan's care. I've been tired and run down recently just doing the bare minimum but still trying to keeping organised. It's a full on job but essential for our life to run smoothly. Note pads, diarys and notes on my phone are my absolute life!! So if you ever want to treat me notepads are my best friend!!
