This was how I pictured our life would continue. I would pick up the kids from daycare after a 10 hour work day, we would play outside and tend to our little garden before going inside so that I could cook dinner. My partner, Michael would come home from work, and we would get the kids bathed and to bed. It was beautiful, exhausting, but nice. I dreamed about all things I would do with my boys as they grew up, all the hikes we would take, games we would play, things that I would teach them. I didn’t plan on having a lifelong illness, who plans on that right?
Well, it’s my reality! Parenting has to change when there are days I can’t get out of bed when I have to avoid too much sun exposure because it causes a flare, and when I have so many doctors appointments everyone has to schedule their lives around my treatments. It is not the life I pictured, it is not the life I wanted, but it is the one I have. So we do what we can with my limitations. We have memberships to our local aquarium, natural history museum, and zoo, our outings are usually short, meals are planned ahead and prepped. Every consideration is taken in case something we do makes me flare. We have to have a lot of help from family. If I am not up for grocery shopping, my partner or my mom will take care of it, if all else fails thank goodness Von’s delivers and we are in an area that is serviced by Amazon Fresh.
I have had to learn to let go of my preconceptions about what a good or perfect life would be like. There are times when I break down and cry because I feel like I am holding my family back. There are times when my kids get frustrated by my limitations, and they tell me it’s hard having a mommy who is always sick. That’s okay, we talk about it, they learn about compassion, understanding, and how to make the best of things because life isn’t perfect and it never will be. We have to change our perception so that we can learn to enjoy life as it is, not how we wish it would be.