On Pride

Those of you that follow us on Facebook know that I promised you a happy post. I told you we were having some good days. And yes, that was true. Unfortunately, we’ve been struggling a lot more recently with James’ health, his GI system in particular, and this overtook us before I could properly revel in the good days. I fully appreciate how unfair this is.

One of the most difficult things about parenting a child with special needs is seeing the good times when they are in front of you. There is an undercurrent of sadness and anxiety in parenting him that I’m not sure will ever go away, and so when things are good, sometimes it is hard to recognize that. In this instance, we saw the good time, but the bad thing swept in and I was surprised. Again. You’d think I’d be used to this ebb-and-flow of joy and sadness after the past (almost) four years, but I’m not. I may never be used to the surprising and unexpected new challenges that crop up when we least expect it. 

But, let’s go back to the good days. James started sitting up by himself (generally in the bed or on his mat at naptime), and this is a big deal. A tremendous deal. It’s been a long time since he’s passed any sort of milestone, and we’ve even seen some regression this year as we’ve dealt with his health problems.

So, imagine my delighted shock to walk into his room and see him sitting up in the bed, looking at me like butter wouldn’t melt in his mouth. 

I asked Mr. Fly whether he’d sat him up, and he said no. Still confused about what was happening, I laid him back down on his back and told him to go to sleep. Just as I was walking out of the room, however, he did it again. He sat up. By himself. And he looked at me again as if he knew all the universe’s secrets and was giving one of them to me right then, pressing a sweet into the palm of my hand. 

I cried, shouted to Mr. Fly to run and see this, and of course we videoed this for posterity. There were more happy tears at school when he repeated the same behavior. It is thrilling and unusual to see James able to control his body, and we are all so proud of him.

Pride, however, is not a simple feeling. My mother used to say of me as a child, as I often insisted on wearing some uncomfortable headband or pair of shoes, that “pride knows no pain.” Perhaps that’s true, but as a parent, pride feels exactly like pain. It is both sharp and aching, sudden and deep. It is a cliche of working with special needs children or parenting them that the joys are all the sweeter for the sadness and struggle that comes before them. I guess that’s true. The pride is sweet, all the sweeter for the high price we pay to feel it. But the pain is there too. 

I haven’t seen James sit up in a week or two. I don’t know if he is still doing it, or if he’s decided that it is no longer interesting. This happens sometimes, where he will master a skill and then drop it, as if he simply couldn’t be bothered to spend his energy on this anymore. We hope that if we can make some progress with his stomach issues, he will feel better and come back to himself a bit. 

My pride knows pain, but I will surely cheer again the next time I see him sit up. 

Thanks to all of you for your support and sweet thoughts over these last few difficult weeks. 

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3 Comments

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3 responses to “On Pride

  1. This is such a beautiful post, Sarah. I really hope that his GI issues will be addressed soon and that he will remember how much “fun” it is to sit up. 🙂

  2. I’ve really, deeply struggled with staying in the present and immersing myself in the good times. The worry and anxiety over what could be next is always hovering. I am always fighting it back. I truly hope I find a way to practice more mindfulness and let go. I’m so glad I’m not alone.

  3. You are such a beautiful writer, Sarah. I love the way you describe seeing him sit up like that when you walked into the room. It’s so arresting. I read these posts with such interest, and I feel a pang for you as you guys go through this.

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