The permanent knot in my stomach

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. 


The day before the day 

Genetics is in the morning. Early. In another city. 

I have never wanted something done and over so bad in my life. I’m on edge. BUT handling it better than the last appointments. Go me. 

Carter had his monthly GI appointment this morning and it went well. We are finally getting to take him off of baclofen. Yay! One less med. He is also pooping pretty normally so we are taking him off milk of magnesia, as well. 

He hasn’t fought not one bottle since putting him on elecare jr., since it’s vanilla flavored. So the doctor gave us strawberry, chocolate and tropical to try. He now gets a variety of flavor, which I’m excited about and he really likes the strawberry. 

The glasses have been a work in progress. No immediate changes, but over the last week he seems happier and more playful. He is reaching with both arms on his tummy now. Sitting up better rather than folding like a sandwich. Tolerating his tummy so much better. 

Tis a good day. Now on to tomorrow…

Calm before the storm 

Our first visit with genetics is this Thursday and I can’t sleep. I don’t know if these two things are intertwined, but I can’t help but believe it. 

I know I could go and run tests and receive no answer. I also know I could go and run tests and leave with one. I don’t know what I want. I feel so selfish wanting to know in terms of it being something I did. Something I passed on unknowingly. 

I guess I mainly want to know so his care and treatment fit the diagnosis, not random therapy to treat a symptom. I want the very best for Carter. I don’t feel like I do enough for him. I feel like I should be doing a lot more. 

I got a chance to chat on Sunday with two women who have gone through/are going through this same journey. Our children are all different, but have similar qualities. It was so nice being able to chat with people who understood me. No explaining these medical terms. No pouty sorry faces. Just a lot of humor and understanding. I enjoyed the hell out of it. 

I guess I’ll try and sleep now. Mountains will start moving at 7:00 when little man decides to wake. And I better be ready.