It's been a bit since I last updated. I am so sorry. Things are just busy here. I feel like I say that all the time. Not like its any different at your house, right? We are all busy!!!
Brigitte is holding her own right now and proving day in and day out that IV nutrition is truly what her body needs. I can say she is doing fantastic. Her new port has been wonderful, she has energy, her color looks good, and she doesn't look like a bag of bones anymore. Now, unfortunately, things aren't perfect and we've got issues we are dealing with....but seems as if this is about as good as it is going to get. So I will take it for however long it lasts. We are in the process of working with her TVI (teacher for the visually impaired) and her neurologist. Her brain MRI and her vision issues are making it pretty clear that she has a cortical vision impairment. For all intents and purposes, she is likely going to be declared "legally blind" but not in the sense that she can't see. She can see, she just doesn't process correctly. So this isn't actually an eye issue, but a brain issue. Its hard to explain, so I won't try to here, but it does explain alot of the issues we are seeing related to her learning style and why she has such a hard time moving around and being who she is. Once again....its a process.
Sean is doing remarkably well too. He has not complained once of a headache or neck pain. He isn't complaining about school. He is doing fantastic in school!! Best decision we ever made was having that second surgery. He was referred to Make a Wish and will be having his wish granted very shortly! He is beyond excited.....and so are we!!!
I made the leap into the working world again today. After almost 9 years of being home with the kids, I returned to work full time. This was one of the most emotional decisions I have ever had to make. Financially, it was a no-brainer. I am feeling much better about it tonight than I was yesterday, but it is hard no matter what. People have asked me time and time again since I got the offer if I "was excited??" Excitement was the last thing on my mind. Am I happy to be among adults again and earn my own paycheck? No doubt about it. Other than that....not much to be excited about. My reasons for doing this aren't purely financial...but are sadly, very emotional.
It is hard for me to explain how this felt. First of all, if it weren't for the availability of a nurse with whom I am very confident will take very good care of Brigitte in my absence, this NEVER would have happened. For her, I am very grateful. My life has become all about Brigitte and less and less about anyone else. That includes my other children, my husband, and more importantly, myself. Brigitte and I are one in the same. There would be no me without her and there would be no her without me. We are inseparable on so many levels. I know that sounds beautiful, but it really isn't. Its not good for either of us.
The big elephant in the room is that more likely than not, I will outlive my daughter barring some major breakthrough in medicine or a miracle which cures her. I have come to accept that over the last few months. Its been a hard realization, but it is reality. Until today, the last four years of my life have revolved around taking care of Brigitte. I have forgotten how to do anything else or be who I used to be. I honestly cannot for the life of me remember what life was like before Brigitte. I really can't. I have become a machine just going through the motions to get through every day.
So today, I did it. I cried the entire way to work. I cried on my break. I cried on the way home. But I did it. I got through the first day. All I can think about is that the time I am away is time I am losing with her. Hours and days that are limited are hours and days I will never get back. However, I also thought about all the things this going to allow my family and I to do. Next year, Brigitte will be in Kindergarten 5 days a week. The year after that 1st grade, full days. Then where will I be? That "something" will ultimately take Brigitte, but I can't allow it to take me too.