The hardest job

I wear a lot of hats...Wife, daughter, sister, aunt, nurse, midwife student, cancer patient, and so many more, but the hardest of them all is, mom. Of course it is also the most rewarding.

The last few weeks have been difficult in our house to say the least. E started 4 year old kindergarten and because of my work, school, and treatment schedule he goes to "after care" every day of the week. Ella is going to daycare full time too. This isn't exactly what I wanted, but with being on call when I'm not at work or treatment this was the best option so I could work, finish school, and maybe get some rest.

So far it hasn't worked for me getting rest and it hasn't been a joy for our expenses, but that's mostly because I'm not working the hours that I'm "supposed" to because of appointments, my week in CA surfing, and my chemo treatment schedule. At the same time it's a tough call on whether to pick up more hours because I need to finish school and more importantly I need some rest time.

If only being a cancer patient was easier and not such a burden in ways that I don't have time and energy to try to describe tonight.

Another advantage of having rest days is that I always hope that I can pick up E and bring him home so he can get a nap at home in his own bed or next to me while I rest. I would pick up Ella too, but nap time at home isn't her thing so it's near impossible for me to actually get rest when she is home...I keep hoping that will change, but so far she's been consistent.

What hasn't been consistent are our schedules and our kid's lives. One week my mom is here for a few days, then the next week I'm gone and Geoff's mom is here for a week, then I come back and I'm home for a few days before I get my port, or what the kids see as a big "owie." It's hard when looking at lives from our kids perspectives because they aren't old enough to understand it all, and one day it seems like none of it phases them and the next, one or both are having epic meltdowns and saying things that make you wonder how much do they really understand?

So far this week Ella has had a meltdown because she didn't want to leave my side for bed after seeing my port dressing. E has had a meltdown about not wanting to go to school because "no one likes him there."  This does not appear to be at all true if you ask any of his teachers or watch his class for a few minutes, but his reality is what matters most to me. Then tonight Ella sobbed and sobbed at bedtime while Geoff tried his best to console her. Finally he realized she is cutting a two year molar. While he was dealing with this tragedy I was consoling E because he was telling me how no one wants to play with him at school.

This was probably the saddest thing I have ever heard and I've been told that it will take a miracle for to survive cancer, so I know sad. I asked questions and reassured him the best I could, but the whole time my heart was breaking and I was wondering where have I gone wrong? He always seems so happy at school and everyone swears he gets along with the other kids famously. Is this because he doesn't relate to the other kids or because they don't relate to him? Is this because he is struggling with all the dynamics of our life? Or is this just a normal reaction to 4k?

I tried to talk about some of this at his school the other day and that discussion didn't go the way I had planned either. Somewhere in the discussion it turned to how good public school will be for E because he will have the support he really needs when (not if) I die. After that I know what else was said but it kind of went in one ear and out the other because that statement was a painful sucker punch that while possibly true, left me disinterested in the rest of the conversation.

Fortunately for us the next few weekends we have friends coming to visit with kiddos that are similar in age to E. I've already talked to him about it and he is so excited to play with these other kids. Furthermore, as best as I can tell from digging further it sounds like even he recognizes that kids play with him at school but he's sad because the kids from his school don't come to our house to play. 

The kids in our neighborhood all go between each others houses, but they are all a few years older than E and this past year is the year where that difference finally started to show. He isn't old enough to do the things they can and so he is kind of a last resort for them to play with. We understand this, but he doesn't always. Meanwhile Ella is still blissfully oblivious to all of this. She quite happy to have E and us to entertain her.

The one thing I've noticed that both kids are consistently happy about is Gilda's house. Thankfully they have fun there and seem to feel a connection to the other kids that are in a similar situation to them.

I just wish there was more I could do. Having cancer has it's bright points such as surf camp and so much love from friends and family but it is gut-wrenching as a mom. There are so many ways it sucks. I can't physically, emotionally, or financially live up to the expectations I had for being a mom. I don't know if I'll get to watch my kids grow up and then I have to watch them struggle with trying to understand why everything is so different for them. If only I could protect them from all of this. I would do anything. Anything.