Am I ready?

It’s not easy. I wonder if I’m too sensitive. Do I just need to grin and bear it? I realize that this is just the beginning of the questions and comments about our special needs son. It’s starting. As he gets older his developmental delay is more apparent as well as his size; I’m not sure if I’m prepared. I thought I was but maybe I’m not.

People ask if he’s tired constantly. “Oh, he must be tired?” was one comment as I was holding him on my hip and his head was on my shoulder. No. Not tired. I want to say “actually he’s getting much stronger and his head control is his biggest struggle. I never would have been able to hold him in this position a few months ago”, but I don’t say that…. I can’t even recall my answer. I probably just smiled or kissed his sweet head and changed the subject. My heart hurts a little. I get the feeling deep inside of me that I had when we met with his neurologist after his MRI. I wanted to grab him and run; run far away and never let another person touch him or look at him. He’s my perfect baby and how dare you tell me different. I remember that day like it was yesterday and tears well up in my eyes as I relive it.

“Do you love not working?” This one probably annoys me the most. Excuse me? You think I don’t “work?” I stopped working outside of our home over 6 months ago to stay home and care for our son, and believe me, this job is much harder. He is a twenty-four hour job. Meetings with specialists, occupational and physical therapy appointments, constant therapy at home, and let’s not get started on the feeding issues! Everything is work for him, and when I say “everything” I do mean everything. Turning his head to the right is something that we’ve recently been cheering about, switching a toy from hand to hand is another big feat, and tolerating a cookie or cheese puff on his lips is a reason to jump for joy! It’s all work. So, yes, I love that I can stay home and ensure we are doing everything we possibly can to help him gain strength and new skills, but don’t think that I’m meeting friends for coffee or popping by the gym for a great workout. I wish.

“Will he grow out of it?” Yes. You heard that right. I’ve actually had quite a few people ask this. I want to say “are you going to grow out of your face?”, but that is not very nice, is it? This is not a habit or behavior that he will outgrow, this is who he is. He’ll meet milestones, but in his own time and not by a chart. He’ll get stronger but progress is slow, really slow. At his last check-up we were given a packet of questions about his development. I wanted to put a giant X through each page. I barely read them after the first few questions; my sight was blurry as my eyes were filling with tears. It was a reminder of how far we have to go. God gave me the gift of patience for a reason and now I know why.

This is all new. I’m still learning how to navigate this road we are on. I know that people mean well, but sometimes it just hurts. Put yourself in my shoes and think. What if this was you?