We were able to make a day trip today to the local Stanford Shopping Center and just attempted to be normal and feel human again. The sun finally came out and was shinning intermittently throughout the day (over the last 5 days its been dumping rain in this area), but it was still nice to get out and look around at things for Amber...she has been running low on clothes and it was nice to get a few things to make her feel like a pretty women again, which if you ask me is good for mental health and she deserves it after all she has done and been through over the course of the last few weeks and honestly years. I went looking for and found a dragonfly pendant necklace (it was our 6 year anniversary while we were in the hospital last week). For those who don't know, dragonflies are suppose to represent healing and new beginnings...so I thought it was very fitting and it looked very pretty on her, she seemed to love the surprise (we never buy gifts for each other, so it was a nice unexpected treat on her end). Amber has truly sacrificed everything for Dylan. I wish there was more I could do for her to show her how much I appreciate what she does and has done to get Dylan to where he is. She is an amazing person and I'm so lucky to call her my wife, mother to Dylan, and my best friend. Even though it was a better day, I keep getting overwhelmed with anxiety and stress.
I can't help but feel very stressed at this moment. I have been worried about my place of business since all this even became reality and the thought of me not being there is really hard. I have spent the better part of 7+ years helping build our company to what it is (LIC Motorsports), not that its anything special but its both me and my brother's lively-hood and I have invested so much time and energy into it...I just can't say 100% my mind is ready for work mode. I feel like this is the issue with most self-employed business owners; you become tied to your work. I know over the years I have sacraficed a lot to get our business to where I wanted it and being away for these last 2 weeks has been very challenging to say the least. I know my brother can handle it but I have dedicated so much personal time that I feel I deserve the break that I need to be with my family but at the same time, I can't be away any longer than what is needed. I really feel like I'm in a awkward predicament and I don't want to let down my brother or my family during this time. Onto another stressor.
One of the more stressful things about having dealt with a child that has liver disease over the years is the constant "unknown". This unknown has kept me up very late at night, made me physically ill, and more often than not will dictate ill feelings for the scary/unknown future and what it may hold. Now most will say, "live it day by day", "live in the now only", "don't stress about the things you can't control". I hear all these often and there is nothing wrong with saying them but that's really where it ends....try living them; its a very different thing to do and is very hard to say the least on my end.
We have contemplated that if all goes well this week that we would move back to our residence and make the trek back and forth to here 2x a week. The more and more we think about it, the more and more I realize that its not going to work out. I don't think its fair to have my wife and kid get up at 4am 2x a week (and that's under best case scenario, if his labs are not ideal one day...you come back daily until its back under control and/or stable). I'm eager to get back to our lives under our own roof but being next to the hospital seems very critical as well, after all it's why they say a min 6-12 weeks living near the facility. Really not sure what to do right now, I'm not trying to make this harder on anyone, albeit my brother or my wife/kid. Just always seems like I'm forced to make decisions that aren't the most comfortable.
Its now past 2am in the morning and my insomnia is about as bad as I've ever had it...not sure what else I can do but think, type, and attempt to just do my best. I'm stressed for labs tomorrow AM but hopeful that everything is still on track. Until tomorrow, which I hope is uneventful