Parenting a child with a delay or disability, known or unknown, is hard. I imagine parenting any child is difficult, but this journey is exhausting. I feel like I have to put on this strong, brave face everyday and pretend that I am getting through this easily.
People especially don’t like to hear me mention the difficulty. They don’t want to hear that some days I just don’t want to do it all. Some days I’m so worn out, so exhausted, so anxious, that forming words is difficult.
I constantly think of my life pre-Carter. I had no idea what was in store for us. I think of refusing genetic testing while I was pregnant because I thought I could handle anything. I also thought it was a one in a million chance there would be an issue because I did everything right.
I got my one in a million. Do I feel lucky? Sometimes. Do I feel unlucky? Sometimes. I struggle with my emotions toward this situation. It’s also difficult to make people understand that I do NOT struggle with my emotions toward my son. He is my life. He is all I think about every day. I love him with a love I can’t describe.
I have also noticed that there is a permanent knot in my chest and stomach. It never goes away. The appointments, the therapy, the tests, the not knowing…I live my life scared.
Today was the day I noticed it. I felt a panic attack coming on this morning traveling to the geneticist visit. I felt sick after I ate lunch and I’ve felt sick since. I can’t eat dinner.
How do I take care of myself? Even if I try, I still feel like crap.
Hoping to get more answers today only led us to more damn tests. More pricking my son with needles and more waiting.
God, why? Why can’t this be just a little easier? A little cheaper?
I need to rest. I need to get out of my head. Being in there takes me to some awful places sometimes.