I'm not sure this is where we thought we would be as parents, living in this world in between raising two healthy beautiful children while also having to live in this medical world in order to care for Liam. I've actually caught myself having to mentally change my point of view depending on the situation or conversation I was in. Are we talking homework, sports, school, and the crazy schedule of a school aged child (OK i can do that) but all while trying to also think about the completely separate schedule that Liam has throughout the week. This past school year has been especially challenging with adding in traveling to UCLA and a few unexpected hospital stays. Normally we are able to manage fairly well as most of Liam's therapy and appointments happen while the kids are in school so they don't have to be dragged into it.
As summer quickly approached I didn't really give much thought as to what the kids schedule will look like now that they aren't in school. Well now in the midst of the first week of summer break I am seeing that this is going to be a challenge. Not only a challenge in getting all 3 kids out the door every morning and actually arriving at therapy on time at 8:30 or 9am 3 days a week but also a challenge in finding a balance. This week the kids spent the first half of every single day Mon-Thurs at therapy or doctors appointments for their little brother. Most of the time then having to return home so that Liam can nap which then leaves very little afternoon time for a fun activity.
Today we had an important doctors appointment which was long and informative but also leaves me wanting to spend the rest of my day on this computer researching everything I can (which I do frequently). Since we don't really know what is causing Liam's problems researching is what gives me purpose sometimes, makes me feel like I am doing everything I can for him, which I'm sure any mother would attest to doing in all cases of dealing with a rare disorder. I have to physically tell myself that my other children need me to be by their side to make robots, build Lego's, forts, soccer, baseball, etc etc. I feel torn into two very separate pieces on an everyday basis.
In between parents use an incredible amount of energy trying to do right by every child in the family, making them all feel equally as important and worthy of time. Liam is still fairly young and doesn't understand the scope of whats going on with his little body but I know he too would rather be napping sometimes instead of at another sports practises or pick up. My brain never turns off, I always have a long list of of things that need to get done; calling the medical supply company, paying yet another medical bill, fighting the insurance for another medication that wasn't approved, keeping up the regional center and therapy center, planning and scheduling appointments and procedures, and the everyday care of Liam, his feeding tube, medications and so on. You don't really get a lot of time to yourself because even if you happen to be alone for a minute your brain is consumed with being a parent living in a medical world.
It's a strange place to be, living in between, you don't really fit in anywhere. Your not 100% in when your having conversations about your healthy children and school and sports because a piece of you is stuck back in medical world and your not 100% in when dealing with all the medical stuff because a piece of you is stuck back in the real world. Having a piece of me stuck in the real world has given me the ability to not completely sink down into the the medical world and I couldn't be more grateful for that because being a parent in the medical world is a dark and scary place that can suck you down deeper and deeper and you need to be able to get out of it sometimes.
Luckily for us we have incredible children who embrace having to live in between the life of a normal 10 and 7 year old and the life of having a chronically ill 2 year old brother. They understand there is a lot that we cannot do and they greatly appreciate the things they do get to do.
