A few months ago I sat at work scrolling through emails. I came to one from our Social Worker Casey, it read, we would like to do something for your family, we would like to make you dinners, do you or family have any allergies and is there anything you don't eat? I sat staring at the screen for a few minutes trying to think of how to respond. My mind was thinking, you don't have to do this, you all have families of your own to cook for, you are busy too. But I remembered something Lora our Nurse Practitioner from Johns Hopkins said to us at our first appointment after Bert's ALS diagnosis, she said people will want to help, they will ask you what they can do, don't turn them away, you will need help with this disease. I typed back that dinners would be wonderful, we don't have any allergies and we eat anything.
It's not that I can't cook (although I am not great at it), it's that ALS sucks so much out of a family. First is time, I wish I had about six more hours in the day. What once was done by two people now is left for one to complete, it makes the teamwork of family become an art, your children become mini adults fast, care needs to be completed, and everything becomes an effort that requires planning on everyones part. The second thing ALS takes is motivation, we are positive, I preach it, I live it, I will always find the positive, but lets face it ALS makes us sad and the sadness takes the motivation to do things like cook away. It's easier to eat at Sheetz most nights with a bowl of cereal in between than to plan dinners and cook.
Now I don't know if my co-workers knew that my family was eating Sheetz every night or if God just made it so that they would provide just what we needed but no matter, the dinners were the perfect offer. When the first dinner arrived at work I felt strange, guilty like a slacker because I should be cooking, embarrassed to accept this support. The dinners were delivered with a smile, and cooked with love, it made any awkward feeling subside right away. When I began bringing the dinners home everyone was excited. The dinners were so much more than food. They were family dinners at the table with real plates and silverware and conversations about the day, my kids wanted to know who made them, I would tell them who made the dinner with a little description. The Nurse from the rehab unit who is really good with wounds, or the Unit Manager from the long term care unit that has two dogs, the Social Worker who has two young children, my Boss, the Admissions Dept., Housekeeping and so on...I would tell them stories about my co-workers and what happened during the day, they would tell us about school, Bert and I would talk about how good the food was and we would talk about all kinds of things, but not ALS. These dinners brought us to the table together, we said prayers thank you God for this food and thank you to which ever co-worker made the meal. When your eating Sheetz food, you tend to eat in front of the T.V., in serparate rooms without talking to each other, it does not promote family time not to mention it's not healthy. After a few weeks I warned my family, enjoy this now because it can't last forever. Three weeks later the dinners were still coming, a month after that, three times a week I was bringing home pork chops with pasta and salad, fajitas, salmon, rices, spanish food, bbq, shepherds pie, pot roasts and casseroles. I was writing thank you notes to try and express our gratitude and I was going through packs of notes. A couple co-workers who didn't cook would bring me breakfast, lunch, and my beloved starbucks. No better way to make my day than with starbucks. I love coffee.
Then came dessert. One day a dinner arrived with a cake, we ate shepherds pie and cake all weekend and the next week I mentioned that my kids loved the dessert. The dinners all started to come with dessert, rice crispy treats, cookies, cake, eclairs, and pies. We were eating family dinners and then later enjoying dessert too! It became what Bert and I talked about...the dinner would arrive at work and I would text Bert "we have chicken tonight!", he would text back four thumbs up and a smiley, we would get excited about what dinner we were going to eat that night. One day I was stressed out at work and I texted that I couldn't do it anymore, I just wanted to quit. A few seconds later a text came through "you can't quit, I need to eat, smiley face"...SMILE. The dinners became so much more than food, they were the gift of time, family time, time together that we wouldn't get back, they were the gift of motivation, the positive, they made us feel like ALS was not winning, at least not during dinner...it had no place there.
The dinners were lunch too, I would have to make sure I had lunch made for Bert, things he could open, sandwiches, salads, soups all set up, I would worry if he could get it ready by himself without me...I would be stressed if I was rushing in the moring and didn't have time to get something ready, would he be able to eat. There were always left overs from the dinners and I would turn them into lunches, I would get a few extra winks of sleep and not have to worry that he didn't have lunch.
Yesterday was a difficult day with ALS, I received a text from my boss last evening "my mom is making you dinner tomorrow night", I read it to Bert and we were happy. Dinner tonight was Polish lasagna, homemade apple sauce, slaw, and a pie. We set the table said our prayer to thank God for the food and for my boss's mom who we never met, but felt like we knew; my kids giggled in their adolescence and Bert and I talked about how good the food was and our day. There may be no way for my co-workers to understand what their dinners bring to my family, ALS is difficult to explain, it's difficult to understand. We are grateful beyond what I can put in a thank you note. These dinners have given us a little bit of time when ALS doesn't take center stage and anyone living with this disease knows that it is all consuming. These dinners have been our positive.
Dining with one's friends and beloved family is certainly one of life's primal and most innocent delights, one that is both soul-satisfying and eternal ~ Julia Child
xoxo~Jennifer
It's not that I can't cook (although I am not great at it), it's that ALS sucks so much out of a family. First is time, I wish I had about six more hours in the day. What once was done by two people now is left for one to complete, it makes the teamwork of family become an art, your children become mini adults fast, care needs to be completed, and everything becomes an effort that requires planning on everyones part. The second thing ALS takes is motivation, we are positive, I preach it, I live it, I will always find the positive, but lets face it ALS makes us sad and the sadness takes the motivation to do things like cook away. It's easier to eat at Sheetz most nights with a bowl of cereal in between than to plan dinners and cook.
Now I don't know if my co-workers knew that my family was eating Sheetz every night or if God just made it so that they would provide just what we needed but no matter, the dinners were the perfect offer. When the first dinner arrived at work I felt strange, guilty like a slacker because I should be cooking, embarrassed to accept this support. The dinners were delivered with a smile, and cooked with love, it made any awkward feeling subside right away. When I began bringing the dinners home everyone was excited. The dinners were so much more than food. They were family dinners at the table with real plates and silverware and conversations about the day, my kids wanted to know who made them, I would tell them who made the dinner with a little description. The Nurse from the rehab unit who is really good with wounds, or the Unit Manager from the long term care unit that has two dogs, the Social Worker who has two young children, my Boss, the Admissions Dept., Housekeeping and so on...I would tell them stories about my co-workers and what happened during the day, they would tell us about school, Bert and I would talk about how good the food was and we would talk about all kinds of things, but not ALS. These dinners brought us to the table together, we said prayers thank you God for this food and thank you to which ever co-worker made the meal. When your eating Sheetz food, you tend to eat in front of the T.V., in serparate rooms without talking to each other, it does not promote family time not to mention it's not healthy. After a few weeks I warned my family, enjoy this now because it can't last forever. Three weeks later the dinners were still coming, a month after that, three times a week I was bringing home pork chops with pasta and salad, fajitas, salmon, rices, spanish food, bbq, shepherds pie, pot roasts and casseroles. I was writing thank you notes to try and express our gratitude and I was going through packs of notes. A couple co-workers who didn't cook would bring me breakfast, lunch, and my beloved starbucks. No better way to make my day than with starbucks. I love coffee.
Then came dessert. One day a dinner arrived with a cake, we ate shepherds pie and cake all weekend and the next week I mentioned that my kids loved the dessert. The dinners all started to come with dessert, rice crispy treats, cookies, cake, eclairs, and pies. We were eating family dinners and then later enjoying dessert too! It became what Bert and I talked about...the dinner would arrive at work and I would text Bert "we have chicken tonight!", he would text back four thumbs up and a smiley, we would get excited about what dinner we were going to eat that night. One day I was stressed out at work and I texted that I couldn't do it anymore, I just wanted to quit. A few seconds later a text came through "you can't quit, I need to eat, smiley face"...SMILE. The dinners became so much more than food, they were the gift of time, family time, time together that we wouldn't get back, they were the gift of motivation, the positive, they made us feel like ALS was not winning, at least not during dinner...it had no place there.
The dinners were lunch too, I would have to make sure I had lunch made for Bert, things he could open, sandwiches, salads, soups all set up, I would worry if he could get it ready by himself without me...I would be stressed if I was rushing in the moring and didn't have time to get something ready, would he be able to eat. There were always left overs from the dinners and I would turn them into lunches, I would get a few extra winks of sleep and not have to worry that he didn't have lunch.
Yesterday was a difficult day with ALS, I received a text from my boss last evening "my mom is making you dinner tomorrow night", I read it to Bert and we were happy. Dinner tonight was Polish lasagna, homemade apple sauce, slaw, and a pie. We set the table said our prayer to thank God for the food and for my boss's mom who we never met, but felt like we knew; my kids giggled in their adolescence and Bert and I talked about how good the food was and our day. There may be no way for my co-workers to understand what their dinners bring to my family, ALS is difficult to explain, it's difficult to understand. We are grateful beyond what I can put in a thank you note. These dinners have given us a little bit of time when ALS doesn't take center stage and anyone living with this disease knows that it is all consuming. These dinners have been our positive.
Dining with one's friends and beloved family is certainly one of life's primal and most innocent delights, one that is both soul-satisfying and eternal ~ Julia Child
xoxo~Jennifer
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