I didn’t just wake up one day and have multiple medical and mental appointments, emergency room visits with face masks, or juggle 22 medications for two children and an adult relative.

I eased into it over years. The kind of caregiver I am didn’t just develop in the first weeks of knowing about Gage’s OMA or Quinn’s PKD. The kind of caregiver I’ve become grew out of parenting the kind of people Gage and Quinn are and also some intuition about what is the right thing to do in advocacy.

When they have a need; I try to meet it. On any given day that’s not so different than millions of other moms now and before me. The difference is that I have those needs and the unspoken, unexpected ones to meet, too. Needs that come out of their disease, their academic challenges, and their emotional problems as a result of these challenges.

I’ll be honest. I don’t always want to do what I have to do in fighting for the right thing. But sometimes you can’t just turn away from what you know is the right thing. And that’s where caregiver stress comes in.

The stress comes and goes. And the strength at which I appropriately deal with them comes and goes, too. But I must always deal with them. When things get complicated I just have to plow through it. There isn’t something magical about plowing through it either; I just ignore some other parts of my life and do it. It’s what most people do. Deal with the unexpected messy things that come along with doing what is needed.

Sometimes I have to ignore friendships, my home, my work (Billing! Which I love to do!), my family, my own needs, and my marriage. It is just the reality of a busy life that includes taking care of special needs. Again, I know all moms are busy – for one mom it might be life PLUS homeschooling, another life PLUS managing athletic kids, and yet another life PLUS two outside-the-home working parents but for me it happens to be life PLUS a life-threatening disease coupled with educational special needs. After my PLUS is a constant emotional trip that never ends. When there is a lull, it’s the time to get ready for the next crisis. Which always comes.

Pushing aside my own needs isn’t a choice. It’s necessary. Sometimes we don’t always get what we would choose, right? Sometimes I have to put my head down and not look around and see what is missing in my life because well, that just doesn’t benefit me. Luckily I’m not the day-dreaming kind. Otherwise I’d spend my entire day wishing I were doing anything but what has to be done and it’d be counter-productive. And it just increases the chance for crisis because you aren’t paying attention to every detail of what might go wrong. And what caregiver doesn’t already have enough crisis in their lives? I know I do.

Caring for those with special needs can be all-consuming at times. And for me, right now it is. So, I’m missing a part of myself right now. But that is what doing the right thing means. Could I do less of the things I could give up? Yes. But I don’t want to lose those things either because those at least tie me to the Julia I am, which make me the caregiver I am and help me remember what other needs of my own I’d like to meet, too. So where do I fit my own needs in? Well, I don’t. For this period of time, I put my needs aside because of the greater need. That’s not to say that my needs are unimportant, they are important. It’s just to say that for now, they can wait. Because that’s was caregivers do. Hence, the stress that comes along with all this caregiving.

* Oh good lord how self back-patting this all sounds, like I’m awesome and all-knowing about dealing with special needs. I get that it sounds this way. It’s me really just working through my feelings and explaining to myself why I push my needs aside. While I know my family and friends think I’m awesome, because that’s what family and friends do, I’m not feeling my own awesomeness.