Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 Jodi, Prayers are all I can offer but be assured they are coming your way. You are so strong and amazing and you've inspired and helped so many of us. I wish I lived close to you because I'd come help! You know, I'm sure, that all of us feel that way. Okay - so who among us does live close enough? Anybody? Lindsey Mom to Jack (RSS?/SGA) and Joe, 16 mo old today Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 Jodi - you know our prayers are always with you...pls hang in there in and be the strong person that we all know you are..you have been such a great support system to all of us..I just wish I had the words of wisdom that you always have for us...if prayers are what you need right now then that is what I will do for you... Please stay strong - things have to get better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 Jodi - you know our prayers are always with you...pls hang in there in and be the strong person that we all know you are..you have been such a great support system to all of us..I just wish I had the words of wisdom that you always have for us...if prayers are what you need right now then that is what I will do for you... Please stay strong - things have to get better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2003 Report Share Posted March 25, 2003 ---Jodi, Lean on us as much and as often as you need to. That's what we're here for. It's so not fair, but there's got to be a light at the end of this tunnel. Hopefully when Max is an adult, you will look back on these years and not remember just how hard it was. So many people are praying for your family Jodi. Cindy In RSS-Support , " magicrss3 " wrote: > First, let me thank you for all the supportive emails I have > received. They help so much. I am just overwhelmed and don't know > what I would do without you. > > Now, to say what is really on my mind...I CANNOT DO THIS!!! I am so > in over my head. Between having to prepare for school, teach all > day, take care of Max, mix his TPN bag, put in the new one, adjust > the pump when it beeps....I could go on and on. I came home early > from school today, hoping to rest and eat lunch, but Max was in the > room and I was afraid to eat in front of him. I don't want to cook > or eat dinner because he can't eat. My husband is trying to be > helpful, but he is unavailable because he is working. > > I so badly need some time off, but I can't take it because I've used > up too many days and we need the money. I get charged $80 per day > that I am out. I thought about taking a leave of absence, but I > can't because of the finances. > > I am sick over this. It is so much more than I realized. How can a > family function when one child is not allowed to eat? How can we > have a dinner together? How can I subject Max to the smells of > cooking while he knows he cannot have any of it? WHY DID WE HAVE TO > DO THIS???? WHY is it MY child???? Haven't I had enough to deal > with? > > Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Jodi, I don't write very often, but your email has left me in tears. I admit that I don't know what you are going thru, but I know that over the last two and 1/2 years, I am constantly saying that I can't do this and why me(as many of us do). From everything I have read from you, I know you can do this...you are an amazingly strong woman who loves her son and family very much. You can get thru this because you have to and because you will do everything possible as a mother (even at the expense of your own sanity and happiness) to make sure that Max is the happiest and healthiest boy. You are in my thoughts... ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Jodi, I don't write very often, but your email has left me in tears. I admit that I don't know what you are going thru, but I know that over the last two and 1/2 years, I am constantly saying that I can't do this and why me(as many of us do). From everything I have read from you, I know you can do this...you are an amazingly strong woman who loves her son and family very much. You can get thru this because you have to and because you will do everything possible as a mother (even at the expense of your own sanity and happiness) to make sure that Max is the happiest and healthiest boy. You are in my thoughts... ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Jodi, I'm definitely praying for you all! Please do find a way to eat well. Remember what they say when you're in a plane about the oxygen masks - it is important for the adult to get some air first so that they will be well enough to take care of the child. If you don't eat right, the stress will be so much harder to take. Perhaps you can stick with cold cuts that don't make lots of cooking smells and eat in another room, but it's so important for all of us to fuel up. I send my hugs! I remember how terrible it was when Rob had a very extreme amount of overtime for several months and Tim went on strike with his eating... I'll pray for grace in all your work schedules! Love, Inga At 10:29 PM 3/25/2003 +0000, you wrote: >First, let me thank you for all the supportive emails I have >received. They help so much. I am just overwhelmed and don't know >what I would do without you. > >Now, to say what is really on my mind...I CANNOT DO THIS!!! I am so >in over my head. Between having to prepare for school, teach all >day, take care of Max, mix his TPN bag, put in the new one, adjust >the pump when it beeps....I could go on and on. I came home early >from school today, hoping to rest and eat lunch, but Max was in the >room and I was afraid to eat in front of him. I don't want to cook >or eat dinner because he can't eat. My husband is trying to be >helpful, but he is unavailable because he is working. > >I so badly need some time off, but I can't take it because I've used >up too many days and we need the money. I get charged $80 per day >that I am out. I thought about taking a leave of absence, but I >can't because of the finances. > >I am sick over this. It is so much more than I realized. How can a >family function when one child is not allowed to eat? How can we >have a dinner together? How can I subject Max to the smells of >cooking while he knows he cannot have any of it? WHY DID WE HAVE TO >DO THIS???? WHY is it MY child???? Haven't I had enough to deal >with? > >Jodi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Jodi, I'm definitely praying for you all! Please do find a way to eat well. Remember what they say when you're in a plane about the oxygen masks - it is important for the adult to get some air first so that they will be well enough to take care of the child. If you don't eat right, the stress will be so much harder to take. Perhaps you can stick with cold cuts that don't make lots of cooking smells and eat in another room, but it's so important for all of us to fuel up. I send my hugs! I remember how terrible it was when Rob had a very extreme amount of overtime for several months and Tim went on strike with his eating... I'll pray for grace in all your work schedules! Love, Inga At 10:29 PM 3/25/2003 +0000, you wrote: >First, let me thank you for all the supportive emails I have >received. They help so much. I am just overwhelmed and don't know >what I would do without you. > >Now, to say what is really on my mind...I CANNOT DO THIS!!! I am so >in over my head. Between having to prepare for school, teach all >day, take care of Max, mix his TPN bag, put in the new one, adjust >the pump when it beeps....I could go on and on. I came home early >from school today, hoping to rest and eat lunch, but Max was in the >room and I was afraid to eat in front of him. I don't want to cook >or eat dinner because he can't eat. My husband is trying to be >helpful, but he is unavailable because he is working. > >I so badly need some time off, but I can't take it because I've used >up too many days and we need the money. I get charged $80 per day >that I am out. I thought about taking a leave of absence, but I >can't because of the finances. > >I am sick over this. It is so much more than I realized. How can a >family function when one child is not allowed to eat? How can we >have a dinner together? How can I subject Max to the smells of >cooking while he knows he cannot have any of it? WHY DID WE HAVE TO >DO THIS???? WHY is it MY child???? Haven't I had enough to deal >with? > >Jodi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Jodi - It will get easier. I know it is tough now, remember when I told you how hard it was for us with the TPN that first couple of weeks? Mixing the bag twice a day and injecting the vitamins. Her school calling me to come up to the school 2-3 times a day. THe alarm going off a couple times a night. Plus trying to be a wife to Steve and mother to Tyler as well. One, don't be afraid to ask your local friends for help. Ask if people can help by cooking a meal and bringing it to you all. That way there is less smell in the house. I know one of the hardest things for many of us is asking others for help, but now is not the time to be shy. People usually WANT to help they just don't know how. Two, be honest with Max about your worries about the smell of cooking. HONESTLY, when a child is on full-time TPN, they have almost NO appetite. So I am guessing he is going to tell you that is is worrying you a lot more than it is him. This is not forever. Max will know that. It is just for 6-8 weeks. Three, check out www.oley.org -- a great support organization for families going through TPN. They helped me a lot. Four, again, talk to your union or whomever about going out on stress leave or whatever leave it is that will enable you to get disability. If it fails, try again. We love you. > First, let me thank you for all the supportive emails I have > received. They help so much. I am just overwhelmed and don't know > what I would do without you. > > Now, to say what is really on my mind...I CANNOT DO THIS!!! I am so > in over my head. Between having to prepare for school, teach all > day, take care of Max, mix his TPN bag, put in the new one, adjust > the pump when it beeps....I could go on and on. I came home early > from school today, hoping to rest and eat lunch, but Max was in the > room and I was afraid to eat in front of him. I don't want to cook > or eat dinner because he can't eat. My husband is trying to be > helpful, but he is unavailable because he is working. > > I so badly need some time off, but I can't take it because I've used > up too many days and we need the money. I get charged $80 per day > that I am out. I thought about taking a leave of absence, but I > can't because of the finances. > > I am sick over this. It is so much more than I realized. How can a > family function when one child is not allowed to eat? How can we > have a dinner together? How can I subject Max to the smells of > cooking while he knows he cannot have any of it? WHY DID WE HAVE TO > DO THIS???? WHY is it MY child???? Haven't I had enough to deal > with? > > Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Jodi I hear you. The frustration is there!!!! Now take a step back (which you have probably done by now......given you wrote this on Tuesday and I'm just reading now...Sunday!!!) How about asking Max if family meals bother him? What would he like? I would imagine if you guys were to order in one of his favourite meals that might upset him, but he may be feeling so much relief that he is out of pain this way and that food gives him bad associations with the pain, he may not even be upset at the rest of you eating. Ask him. Maybe he would like that time to talk to the rest of you about some wild program he saw on TV while he was home and otherwise get extra special attention from you, hubby and daughter. Or he may say " I'm perfectly happy lying here on the couch " ............see what he says. Prayers are with you all. Debby I can't do this!!! > First, let me thank you for all the supportive emails I have > received. They help so much. I am just overwhelmed and don't know > what I would do without you. > > Now, to say what is really on my mind...I CANNOT DO THIS!!! I am so > in over my head. Between having to prepare for school, teach all > day, take care of Max, mix his TPN bag, put in the new one, adjust > the pump when it beeps....I could go on and on. I came home early > from school today, hoping to rest and eat lunch, but Max was in the > room and I was afraid to eat in front of him. I don't want to cook > or eat dinner because he can't eat. My husband is trying to be > helpful, but he is unavailable because he is working. > > I so badly need some time off, but I can't take it because I've used > up too many days and we need the money. I get charged $80 per day > that I am out. I thought about taking a leave of absence, but I > can't because of the finances. > > I am sick over this. It is so much more than I realized. How can a > family function when one child is not allowed to eat? How can we > have a dinner together? How can I subject Max to the smells of > cooking while he knows he cannot have any of it? WHY DID WE HAVE TO > DO THIS???? WHY is it MY child???? Haven't I had enough to deal > with? > > Jodi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Debby, Actually, meals have worked out okay so far. We have decided not to sit at the table together, but to sit in the family room and watch TV while we eat. Max can join us if he wants to, or he can go on the computer or stay in his room - whatever he chooses. We thought that it was worth giving up the more formal gathering so that the pressure would be off all of us. So far it has worked out okay. The other thing is that Max is allowed to try Lifesavers and lollipops. Sometimes he can tolerate them and sometimes he can't. At least if he feels like having something in his mouth, he can do that. I also let him taste foods if he really wants to and then he just spits it out instead of swallowing it. It sounds gross, but I don't care. If he is happy with that, it's such a little inconvenience to put up with. The hardest thing I have had to face lately is the grocery store. It was so strange to go shopping yesterday and not be able to buy things for him. I kept reaching out to pick up rice milk or Lunchables or whatever and realized that I could not do that for him. I could not even buy him Peeps, which is one of his favorite treats! My husband told me that if it upsets me that much, I should just give him the list and he will go. I may take him up on that even if I do feel up to it. I'm not that stupid! Jodi Quote Link to comment Share on other sites More sharing options...
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