I was very surprised to see how many people read and shared my blog on Lacey’s first allergic reaction. It was quite mind blowing because our network of people is usually small. Lacey is an absolutely gorgeous girl but her contact allergy (or so we believe it to be) is very hard to manage once we step outside the front door.
Stressful! That word is an understatement, however, the feeling intensifies as you get closer to people and particularly those with food and drinks. People are always eating and drinking, dropping crumbs and spilling things (without washing their hands or cleaning it up…gasp!). This makes it hard to leave the house but as our baby gets older we do not want to isolate her from her community. It has been hard to get some people on board but I will keep chipping away. We used to stick to necessary medical appointments and Nan’s house but we have changed our thinking to how can we do this activity safely instead of how can we keep her far far away (like we did for some time after she had her first reaction).
Just the other day we were enjoying a day at Wet n Wild on the Gold Coast. We set up camp well away from other people but eventually they came, bringing their food closer and closer. The thought crossed my mind that the rest of the world should only eat what Lacey can eat but hey even I couldn’t do that. Anyway the inevitable happened and someone dropped a sauce bottle and it went flying all over Lacey…eeek! I screamed! The people apologised but looked at me like I was a moron it was only sauce. I stripped her and ran for water. It all turned out ok in the end but her little face once again swelled and turned red. Thankfully her breathing was not affected and after an hour in the first aid room we managed to return to our spot but moved it further away from the crowd. We went back to enjoying the water and rides.
Hyper-aware. There is this thing that happens to you once you have seen anaphylaxis in full swing. You suddenly find yourself knowing exactly where every crumb and droplet of food is. Exactly where your hands have been after touching food and exactly how many times to wash your hands in a day. A thousand times is never enough because you just touched the bench which hadn’t been wiped so “go wash your hands again”. It’s tiring. You also know which toys have been contaminated when thrown at the kitchen bench and which plate was splattered whilst cooking with non-safe foods. You are hyper-aware of food now and all the contaminants around you.
Lonely. There are some days when I wish my child was normal enough to take down town without having to stop people from touching her, without having to move her out of the way of every cup of coffee and ice-cream. There are days when I have washed my hands 1 thousand times and I don’t want to do it again. I would love to take her to the bakery and share a cupcake and babycino with her but we can’t. Not at least until her next lot of testing around her 2nd birthday. Maybe she will have ‘real’ birthday cake this year, only the test will tell. There are days when I cry for my girl who may not ever be able to do things the same as other kids. It can be an incredibly isolating journey. Educating people is the hardest. Most don’t get it. I feel very alone.
Lacey Jay. Lacey has blonde curly hair that falls ever so perfectly around her big blue eyes. She has a smile that could light up your life. Cheeky and intelligent she runs rings around her 3 brothers. Lacey can count to 5 and tell you she did a sneeze. She can run away from you really fast when she has something she’s not allowed. And she will look at you to see if you are looking as she sneaks in to her brother’s rooms. She likes Baby Jake and Giggle and Hoot and sometimes likes to suck her brother’s dummy. Lacey gives the best cuddles and kisses and her family is her life. She does not know stress and hyper aware or even lonely. She is surrounded by love. She is not “Stop don’t touch she has allergies” she is just Lacey Jay.