First of all, you have to understand that he hasn't eaten anything by mouth in 9 days, and only had half of a popsicle 10 days ago. He has either had nothing running at all, or just pedialyte running through his g-tube. His only source of nutrition has been his IV tpn that is fed through his Broviac central IV line in his chest. He has had major belly pain and gi bleeding for weeks and weeks. But, does Rowan complain about not being able to eat? Of course not. Look what three amazing things he has done instead.
1. Rowan loves to play with Playdoh, so instead of complaining about what he can't eat, he has just made plates of food that he wishes he could eat, and made me pretend plates of food. One day he had all of us in the hospital room making sushi and chocolate chip cookies. It's kind of heart breaking, but amazing at the same time.
2. Rowan asks to smell anything that I am about to eat. I try not to eat in front of him at all when he is in here, not taking anything by mouth. However, at times, if I don't want to leave him for long, or if someone brings me food in, I do have to grab a quick bite and eat it in front of him. He doesn't cry, he doesn't complain, many of you have witnessed this...he simply asks to smell it. He inhales big deep breaths of each ingredient, saying "ok wait, now let me smell the bread, ok now the turkey" etc. This too has brought a few friends to tears, but you know what, Rowan just lays back sighs and smiles, telling me thank you. Thank you! Thank you for letting him smell my food. Food that he can't eat. It leaves you in awe, it really does.
3. Finally, and this one was hysterical, and sad, and incredible all at once... Yesterday Rowan asked for a Styrofoam cup of ice with a fork, but first he wanted us to draw some things on the outside. I'm not sure if these pictures will be clear enough, so let me tell you what he and I drew on the cup. One side said "breakfast" and had a button to push next to it, with a picture of hash browns on a plate just above it. The next side said "lunch", had another button to push and a plate of French fries just above it. The last side said "dinner", had a button to push and a plate with a baked potato on it. Then Rowan said, "what about condiments?" So, I drew 3 more buttons at the top, with corresponding pictures of "salt & pepper", "freddy seasoning" and something he wanted to call "fiesta sauce" to make the food spicy. (By the way Nelson, he wanted to make sure you knew how he said "FIESTA" every time he pressed that button:)
After we made this cup and I filled it with ice, we played a little restaurant make believe where Rowan would order his meal by pressing the buttons on the cup, and I had to go prepare the food (all ice chips) and bring it back to him. He would pay for his meal, eat a few ice chips, tell me how delicious it was, and then tip me of course. We did this for over an hour. We cracked up laughing every time he wanted more and more condiments on his food and kept pressing the buttons repeatedly. He laughed hysterically at me as I got in the hospital closet aka "refrigerator", pulled his food out of the drawer aka "oven", and shook all the water aka "freddy seasoning and fiesta sauce" on his food.
I will never forget playing this game with him. Not just because of how hard we laughed, but because of the lesson he taught me. If you can't do something or can't have something you want, make light of it, have fun with it, don't complain or dwell negatively on it. Here, I had tried to avoid the subject with him because I felt bad for him. But as usual Rowan didn't. He was content to pretend that he could eat. Oh sweet amazing Rowan, I love you dearly and thank God for all the many many lessons you teach me throughout your trials. Hope this is a little reminder to us all, be content, be satisfied, be happy with what you have.
He might get a kick out of seeing episodes of the Jetson's pushing buttons ordering their food from a a machine and of Rosie the robot maid who served them?
ReplyDeleteThank you for sharing your son's story. It really helped me to put a few things in perspective. I am so serious sometimes and that keeps me in a perpetual wave of happiness and depression. But reading about Rowan has helped me to realise that it's ok to laugh at life and enjoy the moments we have together.
ReplyDeleteBless you Rowan. X