There are six basic human emotions: anger, disgust, fear, joy, sadness, and surprise. As I powered through my own emotional struggle coming up with ideas for this little article, I decided to keep things simple and have decided to share my experiences with these six basic emotions. My daughter Isla is diagnosed with two rare diseases, FOXP1 syndrome and NEHI, and I have experienced all six emotions during my parenting journey.
I don’t experience this emotion too often any more when it comes to my daughter Isla, but I certainly did early on in this journey. I was thrown up on so frequently, my daughter didn’t sleep, she didn’t eat, she didn’t talk, the constant appointments. There was my constant worry about her health while also taking care of her brother, who is not quite two years older, and then later, her little brother. I did not deal with all of this well at all and was angry much of the time.
I still remember throwing her bottle across the room out of frustration that she wouldn’t eat. She was diagnosed with failure to thrive and every ounce mattered, but it was just too hard for her to suck and swallow. Her oxygen tubing would get stuck on couches, chair, her brother. All of it was too much and I had very little emotional support in the home, which exacerbated the issue.
Other than changing poop after poop for eight years, I can’t say I feel much of this emotion. I can be frustrated with all the advocacy required to get appropriate funding, to schedule appointments, to find services that would enhance her skill set, but I certainly don’t feel any disgust toward this “job.” I recognize the lack of government support and many might feel very strongly towards this, but I feel blessed with what we have and I am aware of how much worse it could be — and is — for many families.
I fear for my daughter’s future. More specifically, her future when I’m gone. My daughter is eight years old, so our journey, though it began at birth, has only just begun when you look at the big picture. My fears fluctuate between the “simple” things — will she ever be toilet trained fully, will she make friends, will she graduate from school — to the more “complex” fears, which mostly surround my worry for her independence and what will happen to her when I’m gone. Who will fight for her then?
My daughter brings me joy every day. Her hugs feed a sensory need for her, but an emotional need for me. If I am having a hard day, one of her hugs can instantly make things right again. Watching her accomplish tasks — the monkey bars, reading a new book, peeing or pooping on the toilet for the first time — I could shout from the roof tops with joy. The other day her school had their annual Christmas concert. My daughter was given one line to speak to the audience and she rocked it. My heart grew three sizes watching her succeed.
I think this is a feeling I’m not comfortable with. Sadness involves being vulnerable to the emotion. It’s often easier to brush it aside and move on, as there is always so much to do. A few weeks ago, however, I had a dream and in essence, it involved her two brothers moving out and on in this world successfully. I woke with this deep feeling: what about Isla? I have very likely suppressed all the true sadness I feel about her questionable future. My unconscious brought it to light, however, and I woke up crying with a lot of heaviness in my heart.
My daughter constantly surprises me every day and usually with what most would think are totally mundane tasks. We have been working hard on toilet training, and the first time she walked into the bathroom, put the potty and stool in place, unzipped her jammies and took off her pull up before sitting down shocked me. I beamed with pride. The first time she skipped two on the monkey bars, skipped across the schoolyard or ate a carrot all took me by surprise. It took a few years for me to accomplish this, but to be able to step back and truly appreciate the small gains is so healing.
I think what’s very important for all of us, especially those of us raising kids with special needs, is to understand that these emotions are normal. We are allowed to be angry, we are allowed to be sad, but we can also be full of joy over the smallest accomplishments, because for our kids, some of these small tasks are huge in their world.
And we don’t need to justify it. We have every right to feel a spectrum of emotions. The key is to surround ourselves with people who understand that our emotions can fluctuate; this is a hard job, after all, and we need support and love to get us through it.