Maintenance Day 5: Birthday Parties and Steroids Don’t Mix

There is a lot of pressure in being a parent. First comes the name. Then feeding them the right foods. Then making sure they learning everything on time. Then school. Then…everything! Most of this pressure is, admittedly, self-induced. But, no matter where it comes from, we all succumb at some point.

While so much attention is heaped on Scarlett, we have two other children who need our love, attention, and guidance. We have always tried to make birthdays extra special days. Brock and I take the day off from work and we take each one of them somewhere special. This year, that was really important to us with Tate.

He asked numerous times before his birthday, “and my sisters aren’t coming with?” “Just me?” We took him to lunch and the EAA museum to check out the airplanes. We had a lot of fun with him, really talking and observing everything he did. He is such a kind-hearted and empathetic boy. And he is maturing so much. He is not my baby anymore.

We celebrated Tate’s birthday the following weekend with his grandparents and aunt and uncle. Just a small, intimate party this year. It was really all I could handle at this point. It was still going to be special because it was “all about Tate”.

And that’s when the steroids hit. Something set Scarlett off. I’ve blocked that trigger from my mind but I’m sure she could tell you. She’s always good at reminding us what we did wrong. On a regular day, Scarlett is quick to point out perceived injustices. She is, quite frankly, an A+ tattletale. But when she is on steroids, EVERYTHING is unfair, inappropriate, rude, painful…

When she cries, she cries about whatever set her off. Then she cries because her eyes are wet. Then she cries because her ears are hot. Then she cries and cries and cries until she says “I just can’t stop crying!” It’s the saddest thing in the world to see your child crying and not be able to make them feel better. I can’t dry her eyes, I can’t make her ears cold and I can’t make her body stop crying.

It is the angry cries that get me really upset. And that is how she cried at Tate’s party. I brought her up to her room and told her that I would stay there until she was done. I locked the door (locking us inside) and went and laid in her bed. She screamed and kicked the door. She hung from the door knob. She climbed into her bed and hit me and kicked me and scratched me and bit me. Any parent on the outside can say “I would never allow my child to do that” but that was not my child. She can’t control her emotions when she is taking the steroids. I would never allow my child to do that either. Until I realized that she can’t control herself. The moment my 2-year-old told me that she couldn’t make her body stop crying is the moment that I understood.

As I lay in her bed in the fetal position, protecting myself and sobbing, I wanted to yell and scream and fight. But you can’t yell and scream and fight against a horrid disease that is trying to take your child. You can’t fight against the very medications that are making her do this and curing her at the same time. There are days where I want scream over this injustice. There are days that I want to fight and kick and hit and scratch and bite this unfair, inappropriate, rude, painful, horrible disease! It’s not fair that she has to feel this way!

It took close to an hour for her to calm down enough to rejoin the party. It also took Brock and I taking turns to calm ourselves down. And our guests were still there. They all react to this in their own way. My dad had to take a walk. My mom cried. My brother-in-law hugged me like he never had before. Just seeing their reactions makes me cry.

Tate and Evangeline have, unfortunately, seen this process too many times. Evie sleeps in Tate’s bed on bad nights. They cover their ears. They have told us that they are afraid of Scarlett. My hope is that they don’t grow to segregate themselves from her because of these outbursts. My hope is that they forget. Forget all of this except for the love.