Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 Stepheanie and Anne you are right...it is SO a part of your life! In fact, Gaige (our four year old) spent the night with my mom last night and then out of the blue said..."I am going to be a motorcycle man when I grow up and is going to live with Jesus!" and then he was on to the next thing. I dont' think I have shared this but if I have, forgive me. My main reason in wanting to understand what is happening is b/c I dont' want him to be afraid...I want him to look forward to having a whole body...we talk about all the things he will be able to do there that he can't now...like ride a bike, skateboard and rollerblades...play soccer and not have to take breaks every five minutes and no gtubes! So, I told him once when we thought the end was much closer, that when he hears Jesus call his name, we want him to RUN, RUN, RUN to Jesus! He told me a couple weeks later that he wasn't going to Run, he was going to skateboard. So then today, I was putting him down for his nap and out of the blue, he says "I am going to live with Jesus today?" I said "I dont' think so, not today" and he says "Sunday?" and I said "when do you think it will be?" He said "Tuesday" and I returned with "Maybe SOME tuesday". Then he goes on to ask me what kind of skateboard he is going to have there (mind you he is like a three year old deosn't even know there are types) and I tell him Jesus has the BEST ones ever and he can have WHATEVER he wants...he says he will take Jesus to Target so he buy him one! Then tonight asked me if he could drive in Heaven so He and Jesus could go to Target...to TArget is heaven! The whole point of him asking this was, he wants a skateboard so bad now, but knows he can't do it. So yes, death and dying is a common topic and it is almost humorous in the ways my little ones think of it. deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 Anne, I think I would have blown a gasket also. Tell the teacher & principal that my 4 year old talks about death. She has a better handle on the grief process then most adults. My 6 year old has a very firm understanding of mitochondria and what they do in our bodies. They lived it, they understand it. Most people don't understand that when you have a medically fragile child in the house, you have a lot of conversations about dying, death and why. Nothing put the " honest stuff " . It's a testament to you that your daughter explains herself so well. You've done a fine job. Congratulations. sorry the school couldn't see that. Mom to Red, Ada, and Angel Lily ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 Anne, You must have felt livid, they have no idea what it is like to walk in Abby's shoes......... I have written about my nephew Ben, an incredible 11yr. old waiting for a heart transplant, and on occasion have mentioned his sister (just turned) 8yrs. Hannah, she like Abby is not a "normal" child, "normal" 8yr, olds wish for ponies or vacations, Hannah wish is that her brother doesn't die ! When recently they all went to the hosp. for transplant assessment, Hannah was found quietly crying, when asked why she said" I'm crying about Lilo and Stitch" (a movie) my sister took her on one side and asked her why, Hannah replied, " in the movie on the back of the photo, it said "family doesn't leave family behind, and I'm scared that Ben will die, make sure the Doctors know we're never going to leave Ben behind" Also before Christmas Ben was crying and he wouldn't tell my sister why, he said " ask Hannah,( then 7yrs) she knows, Hannah replied, " Ben told me not to tell anyone, he's crying because he's scared about dying !" they all ended up in tears, My sister has never mentioned dying to anyone around Ben or Hannah, and yet they know, My sister in fact feels that Bens illness causes Hannah more "suffering" than it does Ben, So hang on in there Anne, and congratulations on your wonderful little girl.... Take care, Jillian, s mom Re: Siblings to A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 , Thanks for your kind note and words of praise for Abby. No I don't mind that you printed it at all. I think that is wonderful that you read it to your 2 boys and it spurred a discussion. It is amazing that your 5 yr old could understand ....my girls would have been able to at 5 but Sam at age 5 seems as if he does not grasp deeper more abstract things like that yet. Lori - thanks for your sweet note. I think all of our non mito kids deserve our praise. I agree it is wonderful Abby writes out her feelings. she emails my mom every day and that has been a nice safe outlet for her as well. - yes I am a proud mom. She IS 9 but will be 10 at the end of May. Thank you for your nice note and such kind words. It meant a lot to me! Ruth - I showed Abby your note and she says thank you. Actually I showed her eveyones and she was so proud - you are all very sweet. Maggie and thanks for your praise of Abby as well. I had a school conference today and found myself counting to 10 at least 5 times during the conference. The teacher came right out and said that the other 4th grade teachers wonder if Abby really wrote the essay. I was so angry and insulted and told her that if she ever questions my daughter's integrity again she needs to immediately come to me. I asked her why she would question it - is she that unfamiliar with my daughter that she does not even know her abilities. Oh no - it was just that the concept of death and anticipation of death are not what 4th graders write about. I told her that maybe the staff needs me to do an inservice on children with special health care needs and their families- principally their siblings. Abby is not unique in her thoughts and anticipatory bereavement of her sibling - this is her world like and like it or not it has always been wider than dolls and soccer and whatever else little girls in 4th grade write their stories about. She then said 'well, she used very big words and talked about what a mitochondrial disease is." It would have been funny if it was not my child's integrity being questioned. She kept saying 'well we are letting her go to the college" and I told her about 10 times that it meant nothing to me anymore. what mattered was that now I know they question my daughter's truthfulness, my truthfulness and they obviously have no clue what her abilities are. She said "well I apologize and we know Abby is an excellent writer but it's just not what 4th graders write about!". I'm still upset about it and plan to talk with the principal on Monday. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 stephanie my 5 year old daughter does the same thing in regards to our angel Max. i think in some ways they are reassuring themselves as to where their siblings are and also taking care of us. through the devastation of losing a child my rainbow is just how together and connected my daughter madison is. always an incredible child and now and exceptionally compassionate girl. susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 Don't know if I can express this thought well, but, I often wonder how my kids will live there life- " free " of the fear of death from such a young age. We did not want Lily to die, like you don't want to. Yet we could see the definite positives. My kids were always " cataloging " the benefits to Lily and are still adding to the list. Ada told me the other day not to be sad about Lily never getting married ( never expressed that one out loud to her! How did she know?) That she would get married in heaven and have a beautiful dress, and a great big cake, and everyone would be there to see their beautiful love, because her husband would love our Lily as much as we do. Then off to a mud puddle she ran, leaving her Mother blubbering in her wake. Mom to Red, Ada, Angel Lily ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 susie, I complete agree. Lily's sibs are also very compassionate kids. Also highly " tolerant " of many differences. They don't even see them. Sorry about your boy Max. It hurts so sometimes, doesn't it. Write if you wish off line. Mom to Red, Ada and Angel Lily salclerkpinetwn@... ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 Anne: please talk to the principal. It hurts you and Abbey that they don't feel she could write something that deep. This has been her whole life, dealing with illness and what goes with it. I've been complimented on how responsible my boys are and I know it is because of dealing with Leah. And may be parents don't bring up those subjects that they consider taboo. Abbey learned big words because that is what happens when you have a special needs child. They hear the parents talk and they are at doctors appointments and it is amazing what they pick up as they are sitting there quietly waiting for the appointment to be over. How many children know about IV's and what energy cells do and even the word mitochondria. I applaud Abbey and not every child is the same. I am glad she could write those words. I believe it sounded like a 4th grader. Did you guide her with any thing? If so, good because parents need to guide the children with their wording a little bit. But to me it sounded just what a 4th grader could write if they set their mind to it and are very familiar with what they are writing about. My oldest son isn't in to football and such, but let him talk about hamsters and the teacher says he is very informed. Abbey just happens to be very informed about a disease that the teachers aren't aware of. May be they are jealous that they didn't teach her the proper use of words and that she knows something they have NO idea what mito disease is and what is involved and how she feels and thinks. That is what this piece is about; her feelings and this is the best therapy around. Good luck with the principal and please let us know how that goes. If it is ok, I'm going to have 's 4th grade teacher read it and tell me how old she thinks the child is that wrote it. Another opinion. She is a very open minded teacher and it will be fun to hear her comments on this. Tell Abbey way to go. A very smart, aware, intelligent young lady. Nerenhausen mom to Leah, (age 10 1/2 and in 4th grade) Anne K Juhlmann wrote: ,Thanks for your kind note and words of praise for Abby. No I don't mind that you printed it at all. I think that is wonderful that you read it to your 2 boys and it spurred a discussion. It is amazing that your 5 yr old could understand ....my girls would have been able to at 5 but Sam at age 5 seems as if he does not grasp deeper more abstract things like that yet. Lori - thanks for your sweet note. I think all of our non mito kids deserve our praise. I agree it is wonderful Abby writes out her feelings. she emails my mom every day and that has been a nice safe outlet for her as well. - yes I am a proud mom. She IS 9 but will be 10 at the end of May. Thank you for your nice note and such kind words. It meant a lot to me! Ruth - I showed Abby your note and she says thank you. Actually I showed her eveyones and she was so proud - you are all very sweet. Maggie and thanks for your praise of Abby as well. I had a school conference today and found myself counting to 10 at least 5 times during the conference. The teacher came right out and said that the other 4th grade teachers wonder if Abby really wrote the essay. I was so angry and insulted and told her that if she ever questions my daughter's integrity again she needs to immediately come to me. I asked her why she would question it - is she that unfamiliar with my daughter that she does not even know her abilities. Oh no - it was just that the concept of death and anticipation of death are not what 4th graders write about. I told her that maybe the staff needs me to do an inservice on children with special health care needs and their families- principally their siblings. Abby is not unique in her thoughts and anticipatory bereavement of her sibling - this is her world like and like it or not it has always been wider than dolls and soccer and whatever else little girls in 4th grade write their stories about. She then said 'well, she used very big words and talked about what a mitochondrial disease is." It would have been funny if it was not my child's integrity being questioned. She kept saying 'well we are letting her go to the college" and I told her about 10 times that it meant nothing to me anymore. what mattered was that now I know they question my daughter's truthfulness, my truthfulness and they obviously have no clue what her abilities are. She said "well I apologize and we know Abby is an excellent writer but it's just not what 4th graders write about!". I'm still upset about it and plan to talk with the principal on Monday. Anne Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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