Yes, Hindsight is 20/20

So, Parker and I are now finishing antibiotics for illnesses that just wouldn’t come to an end. He is also getting a crème applied to ringworm which came from who knows where. I am using eye drops for pink eye. Yes, we have definitely been having a great old time with illness for the past 2 weeks. When Parker was sick, I knew he had a fever and that he felt horrible because that was rather obvious. What I didn’t know because of his inability to speak, was that his throat was hurting so much that he was unable to swallow and if he could speak, it would hurt too much to do so. I didn’t find out that his throat was hurting until we saw the pediatrician and she told me of his red throat and the necessity to do a throat culture to check for strep. This information was helpful for me because I finally knew his throat was hurting. But, I had no idea how much it hurt until I experienced the sore throat for myself.

I don’t think that knowing about how bad his throat hurt could have helped me do anything else for him, but, it would have been nice to know just how he felt. I feel guilty when I learn after the fact what he has been experiencing. As a mom, I feel that it is my job to take good care of him and help him through anything bad. If I don’t know about the bad until the bad is over, I feel like I didn’t do my job properly and he had to suffer alone. Yes, I know he wasn’t alone and I know that I did everything I could do for him, but somehow that doesn’t make me feel any less guilty. As a mom, I should just know what is going on and unfortunately, most of the time, I don’t really know.

Parker has a speech device that I have been programming for him to be able to “talk” to us. He has had this device for almost 2 years now. At first, he was so excited to push the buttons and hear it speak that he just wanted to push the buttons randomly. He didn’t seem in any way concerned about communicating. I found this fact to be very annoying. I desperately wanted him to want to tell us what he was thinking, feeling, wanting, and needing. I also wanted him to want to talk about school, his family, his toys, people he knows, and special events like holidays. All of this I have put onto the device and showed him how to use it. He uses the device in school, at speech, at OT, and at home. The novelty of pushing buttons has still not worn off after 2 years. He does use it appropriately at least 50% of the time now, but only under our direction and for specific purposes. At least we are making progress. It is slow, but we are moving in the right direction. The hope is for him to keep it with him at all times and when he has something to say, he would push buttons and communicate. He is far from this goal right now. He needs a lot of guidance to use the device functionally and not get caught up in the fun of it all.

When Parker seems under the weather, I always pull out the device for him to tell me how he is feeling. Unfortunately, when he is feeling poorly, the last thing he wants to do is communicate. I can only hope that as time goes on and he experiences the effectiveness of communicating, he will gain a strong desire to let us know how he feels so we can help much more efficiently. The funny thing is that when he was a baby, I couldn’t wait to get through the baby stage and move on to little person stage for the simple fact that I have a hard time not knowing and having to learn what to do through trial and error. I couldn’t wait for Parker to be able to tell me what was happening. It is ironic that what I longed for the most was the one thing I still don’t have and the one thing that we may never have much of because speech developing past just basic language is not very likely due to his syndrome. Sometimes I think that God wants us to work through something very specific, maybe where we are deficient and that is why certain things happen. I’m not saying that I agree with all those people that have said that God really knew what he was doing when he gave Parker to Leo and me. Yes, I know it is a compliment, but it feels like something else. I am not sure God plans on who gets the children with special needs. I don’t think it is quite that cut and dried a plan. It may be. I just don’t think God is so into the actual placement of the children. I do think he finds ways to challenge us when we need to be challenged and if we need to learn a lesson, he provides the ability for us to experience the needed learning. I think that is what is happening here for me. I need to find a way to do the best I can with what I have and be okay with that. I need to trust that He is watching over Parker and He is giving me the skills I need to properly care for Parker. When I feel guilty, I am not trusting in my skills or him.

The key for me is for the next time illness strikes, I need to ask for guidance and than trust my instincts and allow for the guidance to occur. Who knows, in retrospect, maybe I am learning my lesson here, slowly but surely.

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About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in Children's book, novel, non-fiction, seizures, epilepsy, VNS, special needs, disability, Mowat Wilson Syndrome, disability, special needs. Bookmark the permalink.

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