This is my life. This calendar is my lifeline, plus the monotony of day to day life that doesn’t need to be tracked and scheduled into a calendar. Add in the feeds every 3 hours, followed by clean the feeding pump & getting the next feed prepped, keeping N positioned to avoid reflux, then doing his stretches, exercises, & at home therapies, etc. etc. We can’t forget spending some one-on-one time with E. He can’t be overlooked in all this. Where do I find the time to shower? Oh wait, I don’t many days. I’m lucky to brush my hair and teeth daily.
And people wonder why I don’t have time to call and I just text or send short fb messages. I honestly, seriously, don’t have much free time. It’s not an excuse. It’s reality. If you look closely hardly any of these appointments are for me and 95% of these appointments are out of home. I don’t have time for myself. This right now, this blogging, is my only “me time” and I should be in bed.
My life is a little bit nuts at the moment. Ok a lot nuts. I can’t imagine throwing an out of the house job into this mix. I couldn’t do it. Thank God, October (the bottom calendar) was a “slow” month. I had some time to breathe and I even managed a hair cut. Something I haven’t done since February. *gasp*
But it begs one question, with a schedule like this how can I feel lonely?
How would I have time to feel anything but insanity?
But I do.
It can be a very lonely and isolating world that I live in. I feel disconnected even though I’m in touch with people (outsiders) more frequently, I’m out of the house more, and I’m meeting face to face with many different specialists. Somehow the busier I am, the more alone and disconnected I feel. It’s quite the conundrum. But I must say, J is there right beside me every step of the way. He makes it to almost every appointment and somehow keeps his hours at work and still has time at night to see the kids before bed. I don’t know how he does it. I couldn’t. I can’t.
I know the calendar may look a bit insane and all but the medical appointments will eventually slow down. It won’t be like this forever.
So just remember, I’m not ignoring you, I’m not moving on, and I don’t forget about you. It weighs on me that I now rely so heavily on texting (I never used to be a texter) or hoping FB updates will be enough. Times like now, when I do have a short burst of “free” time, it’s already the wee hours and nearing dawn back “home” so I either choose to blog or haul my tired, weary body to bed to start all over tomorrow.
I’m trying. I really am. I’m doing the best I can – the best I know how.
I have not forgotten any of you (even though it may seem like it
some most days) and I do miss you. I often wonder what shenanigans you are dealing with or getting into. I used to be privy to that information. I’m sorry I’m not the friend, daughter, sister, wife that I was. I’ve become a new person that I hardly recognize some days. But I keep on putting one foot in front of the other and doing what needs to be done. One day when I am able to catch my breath and breathe once again I hope I haven’t lost anyone else. Please don’t take my isolation as not caring. Don’t be afraid to tell me what is going on in your life. Don’t treat me differently because I am “so busy” with my little guys or you think whatever it is, is trivial compared to some of things I’ve been going through. It’s not. I still want to know what’s going on in your life.
Don’t treat me differently because of the diagnosis and this crazy schedule. I’m still me buried under these appointments. I just now rely heavily on my iPhone and have some new obstacles. That’s all. I’m still the same stubborn, opinionated person. I still love candy. I still laugh at everything (appropriate or not). The “old me” can still be found, I just have to put her on the back burner a lot but I’m around…alive and kickin’.