The Daily Struggles of a Special Needs Parent

We are always surprised at how unaware a lot of people close to us are to the daily struggles that we face with Evie, we do not fault them for that, since they are not around us 24/7, it can just be discouraging and bring back our initial feelings (after Evie was diagnosed) of tremendous isolation.  I know a lot of it is because we are very conscious and protective of what parts of our journey we share through social media.  We feel like it’s only fair to Evie to showcase her joy, beauty and “good days”, and not highlight her rough moments.  

This creates quite a dilemma- How can we get people to understand what our daily life is like? How can we get friends and family closest to us to know what it’s like to walk a day or even a minute in our shoes? To really show people what Evie goes through-what we have to try and help her navigate day in and day out.

Still, it amazes us that some of the closest people around us don’t realize our daily challenges, when they seem so blatantly obvious to us.  For us, every detail of our life has to be thought through with Evie in mind. Whenever we go anywhere, we have to go down a punch-list of questions before we can even entertain the idea, where for most people with kids, there is not much to think about, except will they be entertained and will there be food (basics of what we think about with Ellis). With Evie it is: “will the weather be okay for Evie to go outside and play or will she have to be inside while all the other kids get to enjoy the outdoors? (As summer approaches, high temperatures prove tricky for a child who does not regulate her own body temperature by sweating). Is it a safe environment for her to navigate on her own, lots of stairs, obstacles, close quarters where she feels like she can’t move freely without bumping into, or tripping on furniture? Are there going to be a lot of other people there, people who may not be aware of her lack of balance or body awareness, that accidentally bump her causing her to fall or get hurt? Will there be too much noise where the only way she knows how to counter it is by yelling loudly to be heard? Will she get restless and wander around with a panicked look on her face until someone gets down on her level to let her know everything is ok? Will Evie be able to be herself (vocalize without getting stared at by everyone, be accepted by other kids) or will she spend the entire time by herself, or simply hovering on the outskirts of other’s games because the other kids don’t know how to interact with her so she isn’t included?  What is our escape plan in case Evie has a meltdown?” Just to list a few things we think about…  

Whenever anyone asks “how are you guys doing”? Our automatic, natural response, is “we’re doing good”.  What we could easily answer instead is “we feel like a train wreck , we’re tired, we haven’t slept, she hasn’t slept, Evie has been screaming non-stop for hours and we can’t figure out why, we want to step away for a minute to collect ourselves but we can’t because what if she needs help with something, we can’t afford all of the therapies that Evie should be getting-and even if we could we wonder if they would actually benefit her, we just for once want her to be able to tell us what is upsetting her and how we can help, and we secretly want to be laying in bed crying right now.”

However, since we like to focus on the positives and try and find the good in every situation, the answer will always be “we’re doing good”.  We realize that despite everything we deal with on a daily basis, we still have so much to be thankful for. Not every day is such a challenge (as today was) some days are truly so beautiful that we wonder if the feeling could sustain us through all of the hard times-it doesn’t, but we are always hopeful. Most importantly we realize that things could be so much worse and for that we are grateful, and we understand that other’s have greater hardships.  

We don’t really know how to figure out this dilemma, how to solve it, and maybe we never will. We are going to continue parenting as best as we can and continue to figure things out along the way. Give people we know, and even those we don’t know, the space to ask questions, to lean in if they so choose to. All we can say is, next time you ask how we’re doing and we say “we’re doing good”, just know there may be a lot more to it that we don’t want to burden, or bother, you with.  If anyone wants to know what our life is really like behind the scenes, all are welcome! Come spend time with Evie and you might learn some things and see what life might really be like in our shoes-in her shoes, day in and day out.