The illusion of normal is gone
GI, Jackson, William

The illusion of normal is gone

The last few weeks have been very hard. My last few posts have been light and fun, but this one isn’t. I have been struggling with writing this for a couple of weeks, going back and forth about what to say and not say, but I have decided to put it out there. After all this blog is about the good and the hard.

We are struggling. Will is not taking to eating solid foods. He was doing OK for a while, but has gone backward since we returned from our ski trip. He ate great while we were gone, but as soon as we got home he went back to putting food in his mouth chewing it and spitting it out. For about a week the only things he would swallow were cheerios.

Then he started swallowing more for a few days, then started refusing to put things in his mouth all together. It has been getting worse and worse, until last night at dinner and today at lunch where he took about 3 bites. Then he sits in his chair and hums. It is the most grating irritating sound you can imagine and he will do it for minutes on end. No matter what you give him it doesn’t stop.

So I have lost it at least a couple of times (including today at lunch) calling Jim crying if he happens to be at work or just putting Will on the floor and going to a different room. As a mom you aren’t supposed to admit that you loose it, but we all do. I try so hard to keep it together, but when I do loose it I realize that part of what I am feeling is my frustration with my kids not be “normal.”

I have to let go of the idea that my kids will be “normal.” But there is something so comforting when you go to the doctor and they say yep, they are normal or this is a normal step. When it comes to food and eating we have never been normal. At least with Jack it happened early on and was very obvious that he was going to follow his own path.

Will has bounced in and out of normal since he was born and I think that may have been harder. He was breastfeeding great, then the milk protein intolerance showed up. Then reflux and we got both of those under control. Then his refusal in August and we figured out it was his swallow and got figured out. Then he didn’t want to purees off the spoon, we thought he want to pick things up. So I worked with him and found foods that would work. Now he doesn’t want any of it.

The thing that looms for me is that we are supposed to be transitioning him from the bottle as his primary food to solid food right now, in hopes that he is off the bottle by 14 months. There is no way that is going to happen.

I just don’t understand why. Why do my kids have these issues when so many around us don’t have any. We were supposed to have been dealt our hard cards with Jack, but then we found out about Will’s eyes. I had almost come to terms with eyes, but when we have more struggles I feel overwhelmed. I know there are families that have a lot bigger issues and I don’t want to take anything away from them. I don’t know how they handle it so well.

So my illusion of normal is gone. I had thought maybe we would get back there, but I know better now.

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  1. amberhj says:

    Was sorry to see the stress you wrote about here, but I’m glad to see that you seem to be doing better since this February post! I come to your site with even more interest now, because after an ER visit, we are bound to see Dr. Avery Weiss about a very strange occurrence with Stella’s eyes. It’s a bit scary, and I just want some answers as it’s all very unclear (oy, no pun intended). My mission for this week is to score an appointment with him, though I know it’s hard to do, with a referral from Stella’s doc (who sent us to the ER after seeing what was going on with her and paging neurology at Children’s) and from the ER docs. I’m heartened to see that you seem to have such a positive experience under his seemingly expert and thorough care. Thanks for sharing your experiences! I can relate even more now, so I’m glad to know that you’re out there 🙂 And thrilled to see how well Will and Jack are doing.

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