If you follow my Facebook page, you probably saw that I took a break from Facebook - but in reality, I took a break from the internet world. It was a much needed break and allowed me to start working through some of the demons that have made there way into our world. While I still have a lot to figure out and a lot of work ahead of me, I am ready to start updating on our blog again. This will probably be the only place I update, so if you want automatic updates - please take a few seconds to sign up for email updates. I will not know if you subscribe and will not utilize your email address in anyway.
So.... now onto some of the things that I have been working through. (a summary at least.....)
The reality that Liam is now in 2nd grade and going to a new school.
The great news that Aine is in a better position than she was l year ago, but the confirmation that she should not go to school because lung wise it is too dangerous for her. Since her immune system is messed up and any illness can affect her lungs so drastictly and so quickly; we will be putting her into a homebound program. We were expecting to receive the "no go" card from a doctor, but it honestly doesn't make it any easier to swallow the news. So..... now we are working with the school get her into the homebound program.
I had surgery on my nose due to a deviated septum and am recovering very well from it. I have realized just how sick I was prior to surgery and how much the migraines I was having affected myself and my family. I had to cancel a lot of Aine's appointments during this time and am working on re-scheduling all of the missed appointments, which is extremely time consuming. I still get really tired after a super busy day or a really stressful day, but nothing like it was before so I will take it and keep moving forward.
Aine is having skin issues that we are working on figuring out. We believe it is a severe reaction to mosquito bites, but will have to wait to get a final diagnosis from the dr.
We are working on weaning Aine off of a medication and we are at the stressful point which is the determination point. Her body will either be successful or it will fail which would likely land her in the hospital. So I am monitoring her levels multiple times a day to hopefully prevent anything from happening.
We have had another piece of equipment added to Aine's daily regiment to help her cough the gunk out of her lungs. She is doing well with it, but still has some learning to do to make it work as well as it should. I am working of figuring out the schedule so that we can fit it in as many times as it is needed.
We are coming up on winter sooner than I want and early cases of illnesses that Aine needs to stear clear of; which means I have to start putting winter protocol into effect. The first is minimizing the places that Aine is allowed to go (grocery stores, gas stations, convience stores, schools, restaraunts, etc), the next is to make signs for the doors (I need to make a permanent one, but haven't yet), then the biggest and most hated one - closing the house down for the winter - meaning visitors will have to answer a series of questions: How are you feeling? Runny nose? Headache? Fever? Last time you got shots? Which shots? Have you been around anyone that is sick? We are also getting her masks ready so that she can go to her therapy lessons.
I am trying to mentally prepare for the stares, nasty comments, and jumping back like she has the plaque because; at the age of 5 Aine has had to learn how to protect herself from getting sick. I am grateful that she hasn't figured out the looks are negative and isn't affected by it, but I know those days are short lived and soon her feelings will be hurt. I have been teaching her how to answer people when they ask questions. I have been telling her to smile when people cover their mouths, glare, or speak to me like she's going to get them sick when in reality - they are more dangerous to her than she is to them.
I am preparing myself for the day that I say - ok!! Time for homework!!! Last year was not pretty - I'm guessing this year will not be pretty either. She oh so wants to go to school - I wish I could send her, but quality of life is soo much more important than her going to an actual school and being sick all the time. I continue to tell myself we are doing the best thing for her as she only went to school 8 times last year. Yes - you read correctly Eight days.
I am trying to mentally prepare for the days that Liam wants Aine and I to go play in the snow with him and I have to deny him the first, fourth, tenth, I forget how many times I have to say no by the end of the winter. He understands that Aine is unable to control her temperature and will turn blue after 5 minutes in the cold, but he doesn't give up asking - even though one day soon he will - and I will have missed out on all those opportunities to play in the snow. At 7 - I still have yet to teach him how to make a snowball, a snowman, a snowfort. We have never had a snowball fight, have gone sledding one time (and I'm sure he doesn't remember it), and made One snow angel.
I am trying to mentally prepare for it to be Aine and I - just Aine and I. Lack of adult interaction is scary, draining (both mentally and physically), and not good on full sentences.
You may be asking Why? Why are you telling me this? or saying - Oh... I'm Soo Sorry for You!! But I'm asking you not to be sorry for me, for Shawn, for Liam, or for Aine. I am telling you this so you understand why I have not been giving updates and why I have been away from the world of the internet for so long. The brain is a wonderful place, but it is the worst place that you can be when you are feeling down, unsure of yourself, or overwhelmed to name a few. I'm also telling you this so as I update on various things you will understand where my fears, confusion, frustrations are coming from. The world is a crap place right now with a lot of crap going on and I let it affect me in a way that it shouldn't, so I turned my attention away from the source of negativity and instead to my family and what I can do to help them and how I can be there for them.
As always - please don't hesitate to ask any questions. Don't forget to sign up for email updates if you haven't already and look for more updates (Fun ones :) )
