We had a little ritual, Dear Son and I. Every time he was released from the hospital, I would make his favorite dinner, the night we got home. Sometimes, days would go by before we could go home, sometimes weeks and one time, over a month went by. During his admissions, he might go from eating “some” hospital food or not eating anything at all, depending on how sick he was. It was a routine I started a long time ago, to celebrate being home and to celebrate being able to get a hot, home cooked meal, something I miss after weeks in the hospital.
Dear Son is definitely a creature of habit. He likes pretty much the same foods, over and over and over again. That isn’t to say that he doesn’t eat healthy, it’s just that he likes the same foods. From the beginning, I worked on getting at least five fruits and vegetables in every day and do my best considering his oral/motor issues. I also let him regulate his appetite and tell me when he was full. This might be as simple as him turning his cheek when he was done, but you always got the message.
His paternal Grandma would always like to give “tips” on what Dear Son should eat. She always was trying to get him to eat some dessert, but he would not have any of it. I would always tease her and tell her that Dear Son is the skinniest boy in the family, as if she were a failure. She would always laugh of course and Dear Son would give her a big smile.
His normal diet consists of fresh fruit pureed or finely chopped in his oatmeal for breakfast, and then poultry or occasionally meat, vegetable, and mashed potatoes for lunch and dinner. These were easy things for him to eat, especially with his oral/motor issues. Summer was always exciting because the fruit would always be sweeter, once it was in season, than it was during the rest of the year. We’d pick up the sumptuous peaches, blueberries or strawberries, etc. sometimes at a farm stand and other times, in the produce section like we did normally. It was just the sweetness of everything when it was in season, that he loved. I used to talk to him about it when we would buy it, how fresh it was and how good it would taste in his cereal. For lunch, he used to eat applesauce or fruit/yogurt and a sandwich until a few years back when decided he would prefer a “hot” lunch every day. Since the school lunch is never anything he can eat, his “new” lunch would simply be whatever we had for dinner the night before.
At school, they would take him out into the community once a week. The purpose of this, is to get them to try new things and learn how to act appropriately and/or learn the skills of daily living, such as grocery shopping. They might take the kids to a restaurant, to the park or to the grocery store and buy their favorite treat. Dear Son will have none of this. He only wants to eat his mother’s home cooking.
He used to have one kind of cookie that he liked a few years back. He loved this cookie so much that he used to give me these flirty eyes and a great big smile when he wanted some. He would eat lunch in his wheelchair and then look over towards the armoire where his special cookies would be stored inside in a special container, just for him. I used to call them his “cookie eyes” and somehow that became a nickname of sort that stuck. The cookies he liked, were Nutter Butter Bites, because they were made with peanut butter and they were bite size. No other cookies would do. Ever. He would rather eat nothing, than to eat any other cookie, including home made peanut butter cookies. He gave up eating these cookies a few years back.
He also doesn’t like desserts, of any kind. I admit I typically don’t keep any junk food in the house nor do I make desserts. It’s not because I don’t like them, but I try not to eat them. So I can’t say that he’s grown up around this. But it sometimes presents a problem when say, there is a birthday cake at school or they go out for ice cream and he refuses to eat. They also do a lot of cooking at school, as part of their activities of daily living, but he won’t eat that either. He loves “mixing” though, where they hook up a switch for him to activate the mixer but eating, no thank you.
Since that time, he has two favorite foods: blueberry yogurt and Grandma’s Tuna Pot Pie. Grandma’s Tuna Pot Pie is an old family recipe that is the least calorie friendly dinner that we eat at our house. But it’s his favorite. Every time he is released from the hospital, I make him a tuna pot pie with broccoli on the side, mashed potatoes and a glass of skim milk. He loves it. I roll his wheelchair up to the table and he takes his face and tries to smash it down into the food, his way of telling me to hurry up, because he wants to eat “now”. I try to stop this of course, grabbing his shoulder and telling him to give me a minute and then proceeding to give his a spoonful as soon as possible, so as not to ruin his shirt.
Except for now. The last meal he ate was on May 9th, the day before he was admitted to the local hospital. Prior to the admission, he was able to eat pureed and soft foods or foods without much texture. This made meat and some vegetables out of the question, but I learned to do some work arounds and cook things differently so he could eat them. But now, it’s different. I pour in a can of PediaSure four times a day, at nine, noon, three and six and then I am done. Four more cans are used for his night feeding which starts at nine p.m. and run until seven a.m.
So I am in essence, lost. I honestly don’t know what to do with myself. I hate not cooking for him. I miss the smell of a turkey roasting in my Compact Showtime Rotisserie, that I purchased from QVC, which is my favorite cooking appliance. I put in a whole turkey, slice up some sweet potatoes to cook on top in the vegetable tray and then steam up some broccoli on the stove, and we have a delicious meal in about sixty to ninety minutes, depending on the size of the turkey. The remainder, is sliced and weighed in three ounce increments and stored in bags in the freezer, to be used for salads or sandwiches. I have cooked dinner exactly twice since I have been home. It’s not too much fun eating dinner without my favorite buddy.
The plan is that he will remain on the PediaSure, until it is safe for him to eat and until his throat heals. At this point, he is not able to eat or drink anything by mouth. I have tried to get him to take a drink, but he will have none of it. I fear that he may never go back to real food, a fear I am certain is unfounded, but I remain hopeful nonetheless. I just know that this isn’t my definition of motherhood, pouring a can of PediaSure into a bag for supper. Fast food, it’s just not right.
A midwest mom shares and reflects on the love for her Dear Son Matthew and the challenges of everyday life with a severely disabled young man. In addition, she shares her love for decorating, organizing and keeping a clean home. ©2006-2024. All Rights Reserved.
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6 comments:
You could try giving your son a blended diet. Basically the idea is to put anything that you would normally feed him into a blender and then into his stomach through the tube. It is becoming moe popular to do this with kids that are tubfed long term because the variety in foods is much better than just feeding them the same exact thing evey time. It helps prevent food allergies and things like that. Contact me if you want to know more.
God Bless you, Dream Mom and your beautiful DS. You are a beautiful example of motherhood and acceptance of situations beyond our control. You and DS are blessed to have each other. Thanks for sharing your world with us.
Please don't forget to take care of yourelf...!
All one has to do, is look at these pictures of dear son to know what kind of a mother you are. I hope he will also start eating and drinking again, but dear mom, if he doesn't, it certainly is no reflection on you. You're a wonderful mother with a most beautiful son.
Dream, you can define being a good mom by what you feed your child. Or you can define it in other ways. I know that you felt like a success because he liked your food, but you are really a success because he likes you.
:-)
You had me at Tuna Pot Pie....
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