I want to preface this by saying that nothing I post here is meant to invite any kind of pity. I know I have stated that before. I really just want to help others understand what this life is like and realize it's okay to ask questions and not feel sorry for us and to talk to us about our lives and our kids. It's also an outlet for me to talk things out as we move along in this journey and our perspective changes.
The best analogy that I have come up with to describe what it's like to have a child like Ella is it's like having a perpetual newborn. Any parent can remember the days of having an infant when they depended on you for everything. Eventually, most babies grow up and become more and more self sufficient as time goes on. But with a child like Ella, that doesn't happen. Just as when she was a baby, she needs us to do everything for her plus the medical stuff that comes along with her condition. She depends on us to be fed, changed, moved, etc. She can't tell us what she needs or wants or what is wrong. She doesn't sleep normally throughout the night. It's very similar to having a newborn that grows bigger in size.
You hear a lot about things like "baby blues" and postpartum depression which can be hormonal, but is often also situational for new moms due to things like less freedom, lack of sleep, the worry about caring properly for a fragile new child, and changes in social and work relationships. I think it's safe to say that just like our children don't grow out of the newborn stage, us moms often suffer from perpetual "baby blues" because the situation doesn't change much as they age. It's exhausting, challenging and stressful on an ongoing basis.
I'm lucky to be connected to hundreds of other moms in similar positions as mine. It's one of the most important things to my sanity. But it also allows me to know that dealing with extreme stress and mental health issues is rampant among us. Some are able to get by without medication or therapy, some are not. We all have to do what's best for ourselves and our own situations. And I think (hope) the stigma of dealing with these issues is decreasing because no one should feel ashamed about asking for help.
We are lucky to have access to private duty nursing for Ella. She is too fragile for daycare or school. It's difficult having extra people in your house, but you get used to it. I know that I can't physically or mentally do this alone. Just as babies grow up and are able to help take care of themselves, we have to bite the bullet and realize we can't do it all by ourselves forever. It isn't natural. So when the guilt creeps in that I have a nurse at night to sit and watch my child while I'm asleep, or so that my husband and I can take a break and go out for dinner, I have to snap myself back into reality that this life isn't normal and I deserve the reprieve. It's a constant struggle, similar to those I'm sure every other mom in the world goes through. I know that "mom guilt" is universal! This is just how it plays out in our world.