Oct. 10, 2021

It's one of those angry days.

"Grit your teeth and let it hurt. Don't deny it, don't be overwhelmed by it. It will not last forever."

10/10/21

I am feeling angry today.

I feel angry that my poor daughter can no longer sit up on her own anymore.

I feel angry when I see her struggle and cry in frustration because she can’t grab her toy that she used to be able to reach for with ease.

I feel angry that we haven’t heard her utter her adorable “dadada” babble in weeks. And I’m worried that skill might be gone forever.

I feel angry that my son who was once so smiley and giggled at EVERYTHING has not cracked that sweet smile in weeks and weeks. And I am worried sick that we might not see it again.

I feel angry that EVERYTHING is a fight. Literally NOTHING is easy when it comes to their health.

I feel angry that I feel so hopeless some days.

I feel angry that my husband and I literally never get a break from all the chaos.

I feel angry that we don’t have the luxury of dropping our kids off with a babysitter and going on a much needed date.

I feel angry that my children spend more time in the hospital than they do getting to experience the world around them.

I feel angry that my children are going through this.

I feel angry that my husband and I are going through this.

I feel angry that both of my children could potentially die because there hasn’t been enough time, energy, and research dedicated to this disease. This one makes me SO FREAKING ANGRY.

I feel angry that not enough people care about rare disease.

I feel angry because I am only one person and can only do so much.

I feel angry that my kids cannot speak. That they can’t tell me what they are feeling.

I feel angry that my son is having so many seizures and we cannot seem to control them with medicine.

I feel angry that I have to wake up everyday to see my daughter regress just a little bit more than the previous day.

I feel angry that we have an entire kitchen cabinet dedicated to just their medications.
I feel angry that a lot of days it feels like we have more adaptive equipment in our house than we do furniture.

I feel angry that children’s hospital is on my speed dial.

I feel angry that we never get to do “normal” family things.

I feel angry that there isn’t a treatment available for my kids yet and that these higher ups don’t seem to understand the URGENCY.

I feel angry that everyone takes SO FREAKING LONG TO GET BACK TO YOU.

I feel angry that I was given the worlds most perfect children and now they are slowly being taken from me.

I feel angry that Stella has gotten to the point where she too needs to get a feeding tube.

I feel angry that I can’t just feed my kids some freaking chicken nuggets.

I feel angry that I cannot get these pharmaceutical companies to move faster.

I feel angry when I see other parents complain about things that are so freaking insignificant compared to what we go through.

I feel angry that others just don’t understand, but I also hope to God they never will.
I feel angry that I can’t do more.

I feel angry that I might not ever get to hear my son or daughter say “mama.”

I feel angry that I feel so angry because I know it’s not a healthy place to be.

I know we have SO MUCH to be thankful for in this life. I know this. I don’t want to come across as ungrateful because I am well aware of all the blessings we do have and the steps forward we are making. I am SO incredibly grateful for all the kindness and support that has been shown to our family over the past couple years. This week has just been so incredibly difficult and today was just one of those angry days which is okay to let myself feel. I’m exhausted. I’m over whelmed. I’m sad. But tomorrow will be better.