Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I second what Michele says! Although our family is a little bit backwards on this one--I work " full " -time (4 days/week--what I worked before my son was born), and my husband now is a full-time stay-at-home dad. In a way I feel guilty--like I am shirking my responsiblities as a " mom. " But from both the financial and my mental health aspects (I tried staying home for a month and thought I was going to lose it!), it has just worked out better this way. My husband is always there to take him to the Drs, PT or OT, make follow-up calls. He even brings Evan to my work during my lunch so I can see him sometimes. I laugh because it's quite a sight--he has an oxygen tank on one hip, the portable suction on the other (with the straps criss-crossed over his chest), and Evan in his car seat " bucket " in one hand. I think of him as a sort of modern-day. " health-care " cowboy (now I'm really laughing)--I would venture to say with that suction, he has some of the fastest hands in the west! Some of the men I work with are pretty old school, and are always wondering if " is doing OK " at home or concerned that he will get bored and not able to stay busy or keep his mind active. I always remind them: " It would be different for me...how? " has reassured me he has plenty to keep his mind active, and has renewed his interest in putting together model cars during the short periods of down-time he has. You have to do what is best for your child and works for you. Michele Westmaas wrote: Crystal- The not working thing was huge for our family. I can't imagine working a " real " job where I'm expected to be there all day every day. I need way too many days off and have way too much to do just being Aubrie's secretary! My husband was very stressed thinking that he'd have to carry the financial burden alone and forever. It took a while for me to find things that I could do on a flexible schedule and get paid. Lucky for me, I've put together a package of part-time things that work for me and my family. Then this Family Support Network thing came up just when I could make the necessary commitment. Keep your eyes out too. I hope something will come up that allows you the flexibility and time to meet your family's need. It's hard for other people, even my own husband sometimes, to understand why a full-time regular hours job is just not possible for me. I don't know how other parents do it. I guess if I had no choice I'd figure it out, but I certainly wouldn't be able to give the attention I do to Aubrie's stuff. It has been very hard for me to accept that my life has lots of added requirements that take time and energy and $. All that time, energy, and $ have to come from somewhere so it means I can't do things that other people have time, energy, and $ for. The same thing is stuck under my skin in worrying about Aubrie -- how's she supposed to get in all the curriculum, learning, and social stuff that other kids do during childhood when she has all the added therapies, doctor appts, tires easier, etc?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Teething- Eva- for Thanks , I have learned over the last year that worring about everything everyday is not going to fix it or make it any easier. Somedays I do have a bad day and I just want to crawl into bed and sleep for a long time. But I know I cant to many people need me (mostly Eva) but I deal with it and everyone thinks I am so strong but I know I am not as strong as they think I am. Its also not just Eva that worries me it bills and money. Since I had her I had stopped working so now money is very tight. There is no company that will hire me with all the doctors appointment and all I have to deal with. I worked over christmas when Dan came home from work I left and I just felt like it was to much with going ot doctors appointments, theropy, and taking the older 2 to thier things. I am just so glad I found a group that knows how I feel and I can come here to say how I feel. It helps me be the stress out and I am better for my family that way!! Crystal > > > > Hi Crystal! > > > > How's Eva's teething going? > > I remember you were a bit concerned because she was 8 months old > and > > no tooth shown.. > > > > My Little Warrior Aidan, although 11 months old, should be only > 9.5 > > months corrected, so it's more or less as old as your Eva.. and > > Aidan has no teeth yet either although I can see some bumps ON > > (not " in " !) his gums.. > > > > I also recall that Sally mentioned that her Andy got his teeth at > 15 > > months old or so? > > > > Oh well, I guess is a question of shuffle to the child's body > > development rhythm.. as usual.. > > > > Regards from Ireland! > > > > > > Pat, full of pancakes today! > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I second what Michele says! Although our family is a little bit backwards on this one--I work " full " -time (4 days/week--what I worked before my son was born), and my husband now is a full-time stay-at-home dad. In a way I feel guilty--like I am shirking my responsiblities as a " mom. " But from both the financial and my mental health aspects (I tried staying home for a month and thought I was going to lose it!), it has just worked out better this way. My husband is always there to take him to the Drs, PT or OT, make follow-up calls. He even brings Evan to my work during my lunch so I can see him sometimes. I laugh because it's quite a sight--he has an oxygen tank on one hip, the portable suction on the other (with the straps criss-crossed over his chest), and Evan in his car seat " bucket " in one hand. I think of him as a sort of modern-day. " health-care " cowboy (now I'm really laughing)--I would venture to say with that suction, he has some of the fastest hands in the west! Some of the men I work with are pretty old school, and are always wondering if " is doing OK " at home or concerned that he will get bored and not able to stay busy or keep his mind active. I always remind them: " It would be different for me...how? " has reassured me he has plenty to keep his mind active, and has renewed his interest in putting together model cars during the short periods of down-time he has. You have to do what is best for your child and works for you. Michele Westmaas wrote: Crystal- The not working thing was huge for our family. I can't imagine working a " real " job where I'm expected to be there all day every day. I need way too many days off and have way too much to do just being Aubrie's secretary! My husband was very stressed thinking that he'd have to carry the financial burden alone and forever. It took a while for me to find things that I could do on a flexible schedule and get paid. Lucky for me, I've put together a package of part-time things that work for me and my family. Then this Family Support Network thing came up just when I could make the necessary commitment. Keep your eyes out too. I hope something will come up that allows you the flexibility and time to meet your family's need. It's hard for other people, even my own husband sometimes, to understand why a full-time regular hours job is just not possible for me. I don't know how other parents do it. I guess if I had no choice I'd figure it out, but I certainly wouldn't be able to give the attention I do to Aubrie's stuff. It has been very hard for me to accept that my life has lots of added requirements that take time and energy and $. All that time, energy, and $ have to come from somewhere so it means I can't do things that other people have time, energy, and $ for. The same thing is stuck under my skin in worrying about Aubrie -- how's she supposed to get in all the curriculum, learning, and social stuff that other kids do during childhood when she has all the added therapies, doctor appts, tires easier, etc?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Teething- Eva- for Thanks , I have learned over the last year that worring about everything everyday is not going to fix it or make it any easier. Somedays I do have a bad day and I just want to crawl into bed and sleep for a long time. But I know I cant to many people need me (mostly Eva) but I deal with it and everyone thinks I am so strong but I know I am not as strong as they think I am. Its also not just Eva that worries me it bills and money. Since I had her I had stopped working so now money is very tight. There is no company that will hire me with all the doctors appointment and all I have to deal with. I worked over christmas when Dan came home from work I left and I just felt like it was to much with going ot doctors appointments, theropy, and taking the older 2 to thier things. I am just so glad I found a group that knows how I feel and I can come here to say how I feel. It helps me be the stress out and I am better for my family that way!! Crystal > > > > Hi Crystal! > > > > How's Eva's teething going? > > I remember you were a bit concerned because she was 8 months old > and > > no tooth shown.. > > > > My Little Warrior Aidan, although 11 months old, should be only > 9.5 > > months corrected, so it's more or less as old as your Eva.. and > > Aidan has no teeth yet either although I can see some bumps ON > > (not " in " !) his gums.. > > > > I also recall that Sally mentioned that her Andy got his teeth at > 15 > > months old or so? > > > > Oh well, I guess is a question of shuffle to the child's body > > development rhythm.. as usual.. > > > > Regards from Ireland! > > > > > > Pat, full of pancakes today! > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I second what Michele says! Although our family is a little bit backwards on this one--I work " full " -time (4 days/week--what I worked before my son was born), and my husband now is a full-time stay-at-home dad. In a way I feel guilty--like I am shirking my responsiblities as a " mom. " But from both the financial and my mental health aspects (I tried staying home for a month and thought I was going to lose it!), it has just worked out better this way. My husband is always there to take him to the Drs, PT or OT, make follow-up calls. He even brings Evan to my work during my lunch so I can see him sometimes. I laugh because it's quite a sight--he has an oxygen tank on one hip, the portable suction on the other (with the straps criss-crossed over his chest), and Evan in his car seat " bucket " in one hand. I think of him as a sort of modern-day. " health-care " cowboy (now I'm really laughing)--I would venture to say with that suction, he has some of the fastest hands in the west! Some of the men I work with are pretty old school, and are always wondering if " is doing OK " at home or concerned that he will get bored and not able to stay busy or keep his mind active. I always remind them: " It would be different for me...how? " has reassured me he has plenty to keep his mind active, and has renewed his interest in putting together model cars during the short periods of down-time he has. You have to do what is best for your child and works for you. Michele Westmaas wrote: Crystal- The not working thing was huge for our family. I can't imagine working a " real " job where I'm expected to be there all day every day. I need way too many days off and have way too much to do just being Aubrie's secretary! My husband was very stressed thinking that he'd have to carry the financial burden alone and forever. It took a while for me to find things that I could do on a flexible schedule and get paid. Lucky for me, I've put together a package of part-time things that work for me and my family. Then this Family Support Network thing came up just when I could make the necessary commitment. Keep your eyes out too. I hope something will come up that allows you the flexibility and time to meet your family's need. It's hard for other people, even my own husband sometimes, to understand why a full-time regular hours job is just not possible for me. I don't know how other parents do it. I guess if I had no choice I'd figure it out, but I certainly wouldn't be able to give the attention I do to Aubrie's stuff. It has been very hard for me to accept that my life has lots of added requirements that take time and energy and $. All that time, energy, and $ have to come from somewhere so it means I can't do things that other people have time, energy, and $ for. The same thing is stuck under my skin in worrying about Aubrie -- how's she supposed to get in all the curriculum, learning, and social stuff that other kids do during childhood when she has all the added therapies, doctor appts, tires easier, etc?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Teething- Eva- for Thanks , I have learned over the last year that worring about everything everyday is not going to fix it or make it any easier. Somedays I do have a bad day and I just want to crawl into bed and sleep for a long time. But I know I cant to many people need me (mostly Eva) but I deal with it and everyone thinks I am so strong but I know I am not as strong as they think I am. Its also not just Eva that worries me it bills and money. Since I had her I had stopped working so now money is very tight. There is no company that will hire me with all the doctors appointment and all I have to deal with. I worked over christmas when Dan came home from work I left and I just felt like it was to much with going ot doctors appointments, theropy, and taking the older 2 to thier things. I am just so glad I found a group that knows how I feel and I can come here to say how I feel. It helps me be the stress out and I am better for my family that way!! Crystal > > > > Hi Crystal! > > > > How's Eva's teething going? > > I remember you were a bit concerned because she was 8 months old > and > > no tooth shown.. > > > > My Little Warrior Aidan, although 11 months old, should be only > 9.5 > > months corrected, so it's more or less as old as your Eva.. and > > Aidan has no teeth yet either although I can see some bumps ON > > (not " in " !) his gums.. > > > > I also recall that Sally mentioned that her Andy got his teeth at > 15 > > months old or so? > > > > Oh well, I guess is a question of shuffle to the child's body > > development rhythm.. as usual.. > > > > Regards from Ireland! > > > > > > Pat, full of pancakes today! > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I love the reference of as a cowboy...too funny. You just made me smile. He is such a great father...and you a wonderful mother. Evan is certainly blessed! Hope to talk/see you soon! Love, Amy and MAX Key Storrs wrote: I second what Michele says! Although our family is a little bit backwards on this one--I work " full " -time (4 days/week--what I worked before my son was born), and my husband now is a full-time stay-at-home dad. In a way I feel guilty--like I am shirking my responsiblities as a " mom. " But from both the financial and my mental health aspects (I tried staying home for a month and thought I was going to lose it!), it has just worked out better this way. My husband is always there to take him to the Drs, PT or OT, make follow-up calls. He even brings Evan to my work during my lunch so I can see him sometimes. I laugh because it's quite a sight--he has an oxygen tank on one hip, the portable suction on the other (with the straps criss-crossed over his chest), and Evan in his car seat " bucket " in one hand. I think of him as a sort of modern-day. " health-care " cowboy (now I'm really laughing)--I would venture to say with that suction, he has some of the fastest hands in the west! Some of the men I work with are pretty old school, and are always wondering if " is doing OK " at home or concerned that he will get bored and not able to stay busy or keep his mind active. I always remind them: " It would be different for me...how? " has reassured me he has plenty to keep his mind active, and has renewed his interest in putting together model cars during the short periods of down-time he has. You have to do what is best for your child and works for you. Michele Westmaas wrote: Crystal- The not working thing was huge for our family. I can't imagine working a " real " job where I'm expected to be there all day every day. I need way too many days off and have way too much to do just being Aubrie's secretary! My husband was very stressed thinking that he'd have to carry the financial burden alone and forever. It took a while for me to find things that I could do on a flexible schedule and get paid. Lucky for me, I've put together a package of part-time things that work for me and my family. Then this Family Support Network thing came up just when I could make the necessary commitment. Keep your eyes out too. I hope something will come up that allows you the flexibility and time to meet your family's need. It's hard for other people, even my own husband sometimes, to understand why a full-time regular hours job is just not possible for me. I don't know how other parents do it. I guess if I had no choice I'd figure it out, but I certainly wouldn't be able to give the attention I do to Aubrie's stuff. It has been very hard for me to accept that my life has lots of added requirements that take time and energy and $. All that time, energy, and $ have to come from somewhere so it means I can't do things that other people have time, energy, and $ for. The same thing is stuck under my skin in worrying about Aubrie -- how's she supposed to get in all the curriculum, learning, and social stuff that other kids do during childhood when she has all the added therapies, doctor appts, tires easier, etc?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Teething- Eva- for Thanks , I have learned over the last year that worring about everything everyday is not going to fix it or make it any easier. Somedays I do have a bad day and I just want to crawl into bed and sleep for a long time. But I know I cant to many people need me (mostly Eva) but I deal with it and everyone thinks I am so strong but I know I am not as strong as they think I am. Its also not just Eva that worries me it bills and money. Since I had her I had stopped working so now money is very tight. There is no company that will hire me with all the doctors appointment and all I have to deal with. I worked over christmas when Dan came home from work I left and I just felt like it was to much with going ot doctors appointments, theropy, and taking the older 2 to thier things. I am just so glad I found a group that knows how I feel and I can come here to say how I feel. It helps me be the stress out and I am better for my family that way!! Crystal > > > > Hi Crystal! > > > > How's Eva's teething going? > > I remember you were a bit concerned because she was 8 months old > and > > no tooth shown.. > > > > My Little Warrior Aidan, although 11 months old, should be only > 9.5 > > months corrected, so it's more or less as old as your Eva.. and > > Aidan has no teeth yet either although I can see some bumps ON > > (not " in " !) his gums.. > > > > I also recall that Sally mentioned that her Andy got his teeth at > 15 > > months old or so? > > > > Oh well, I guess is a question of shuffle to the child's body > > development rhythm.. as usual.. > > > > Regards from Ireland! > > > > > > Pat, full of pancakes today! > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I love the reference of as a cowboy...too funny. You just made me smile. He is such a great father...and you a wonderful mother. Evan is certainly blessed! Hope to talk/see you soon! Love, Amy and MAX Key Storrs wrote: I second what Michele says! Although our family is a little bit backwards on this one--I work " full " -time (4 days/week--what I worked before my son was born), and my husband now is a full-time stay-at-home dad. In a way I feel guilty--like I am shirking my responsiblities as a " mom. " But from both the financial and my mental health aspects (I tried staying home for a month and thought I was going to lose it!), it has just worked out better this way. My husband is always there to take him to the Drs, PT or OT, make follow-up calls. He even brings Evan to my work during my lunch so I can see him sometimes. I laugh because it's quite a sight--he has an oxygen tank on one hip, the portable suction on the other (with the straps criss-crossed over his chest), and Evan in his car seat " bucket " in one hand. I think of him as a sort of modern-day. " health-care " cowboy (now I'm really laughing)--I would venture to say with that suction, he has some of the fastest hands in the west! Some of the men I work with are pretty old school, and are always wondering if " is doing OK " at home or concerned that he will get bored and not able to stay busy or keep his mind active. I always remind them: " It would be different for me...how? " has reassured me he has plenty to keep his mind active, and has renewed his interest in putting together model cars during the short periods of down-time he has. You have to do what is best for your child and works for you. Michele Westmaas wrote: Crystal- The not working thing was huge for our family. I can't imagine working a " real " job where I'm expected to be there all day every day. I need way too many days off and have way too much to do just being Aubrie's secretary! My husband was very stressed thinking that he'd have to carry the financial burden alone and forever. It took a while for me to find things that I could do on a flexible schedule and get paid. Lucky for me, I've put together a package of part-time things that work for me and my family. Then this Family Support Network thing came up just when I could make the necessary commitment. Keep your eyes out too. I hope something will come up that allows you the flexibility and time to meet your family's need. It's hard for other people, even my own husband sometimes, to understand why a full-time regular hours job is just not possible for me. I don't know how other parents do it. I guess if I had no choice I'd figure it out, but I certainly wouldn't be able to give the attention I do to Aubrie's stuff. It has been very hard for me to accept that my life has lots of added requirements that take time and energy and $. All that time, energy, and $ have to come from somewhere so it means I can't do things that other people have time, energy, and $ for. The same thing is stuck under my skin in worrying about Aubrie -- how's she supposed to get in all the curriculum, learning, and social stuff that other kids do during childhood when she has all the added therapies, doctor appts, tires easier, etc?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Teething- Eva- for Thanks , I have learned over the last year that worring about everything everyday is not going to fix it or make it any easier. Somedays I do have a bad day and I just want to crawl into bed and sleep for a long time. But I know I cant to many people need me (mostly Eva) but I deal with it and everyone thinks I am so strong but I know I am not as strong as they think I am. Its also not just Eva that worries me it bills and money. Since I had her I had stopped working so now money is very tight. There is no company that will hire me with all the doctors appointment and all I have to deal with. I worked over christmas when Dan came home from work I left and I just felt like it was to much with going ot doctors appointments, theropy, and taking the older 2 to thier things. I am just so glad I found a group that knows how I feel and I can come here to say how I feel. It helps me be the stress out and I am better for my family that way!! Crystal > > > > Hi Crystal! > > > > How's Eva's teething going? > > I remember you were a bit concerned because she was 8 months old > and > > no tooth shown.. > > > > My Little Warrior Aidan, although 11 months old, should be only > 9.5 > > months corrected, so it's more or less as old as your Eva.. and > > Aidan has no teeth yet either although I can see some bumps ON > > (not " in " !) his gums.. > > > > I also recall that Sally mentioned that her Andy got his teeth at > 15 > > months old or so? > > > > Oh well, I guess is a question of shuffle to the child's body > > development rhythm.. as usual.. > > > > Regards from Ireland! > > > > > > Pat, full of pancakes today! > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I love the reference of as a cowboy...too funny. You just made me smile. He is such a great father...and you a wonderful mother. Evan is certainly blessed! Hope to talk/see you soon! Love, Amy and MAX Key Storrs wrote: I second what Michele says! Although our family is a little bit backwards on this one--I work " full " -time (4 days/week--what I worked before my son was born), and my husband now is a full-time stay-at-home dad. In a way I feel guilty--like I am shirking my responsiblities as a " mom. " But from both the financial and my mental health aspects (I tried staying home for a month and thought I was going to lose it!), it has just worked out better this way. My husband is always there to take him to the Drs, PT or OT, make follow-up calls. He even brings Evan to my work during my lunch so I can see him sometimes. I laugh because it's quite a sight--he has an oxygen tank on one hip, the portable suction on the other (with the straps criss-crossed over his chest), and Evan in his car seat " bucket " in one hand. I think of him as a sort of modern-day. " health-care " cowboy (now I'm really laughing)--I would venture to say with that suction, he has some of the fastest hands in the west! Some of the men I work with are pretty old school, and are always wondering if " is doing OK " at home or concerned that he will get bored and not able to stay busy or keep his mind active. I always remind them: " It would be different for me...how? " has reassured me he has plenty to keep his mind active, and has renewed his interest in putting together model cars during the short periods of down-time he has. You have to do what is best for your child and works for you. Michele Westmaas wrote: Crystal- The not working thing was huge for our family. I can't imagine working a " real " job where I'm expected to be there all day every day. I need way too many days off and have way too much to do just being Aubrie's secretary! My husband was very stressed thinking that he'd have to carry the financial burden alone and forever. It took a while for me to find things that I could do on a flexible schedule and get paid. Lucky for me, I've put together a package of part-time things that work for me and my family. Then this Family Support Network thing came up just when I could make the necessary commitment. Keep your eyes out too. I hope something will come up that allows you the flexibility and time to meet your family's need. It's hard for other people, even my own husband sometimes, to understand why a full-time regular hours job is just not possible for me. I don't know how other parents do it. I guess if I had no choice I'd figure it out, but I certainly wouldn't be able to give the attention I do to Aubrie's stuff. It has been very hard for me to accept that my life has lots of added requirements that take time and energy and $. All that time, energy, and $ have to come from somewhere so it means I can't do things that other people have time, energy, and $ for. The same thing is stuck under my skin in worrying about Aubrie -- how's she supposed to get in all the curriculum, learning, and social stuff that other kids do during childhood when she has all the added therapies, doctor appts, tires easier, etc?? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Teething- Eva- for Thanks , I have learned over the last year that worring about everything everyday is not going to fix it or make it any easier. Somedays I do have a bad day and I just want to crawl into bed and sleep for a long time. But I know I cant to many people need me (mostly Eva) but I deal with it and everyone thinks I am so strong but I know I am not as strong as they think I am. Its also not just Eva that worries me it bills and money. Since I had her I had stopped working so now money is very tight. There is no company that will hire me with all the doctors appointment and all I have to deal with. I worked over christmas when Dan came home from work I left and I just felt like it was to much with going ot doctors appointments, theropy, and taking the older 2 to thier things. I am just so glad I found a group that knows how I feel and I can come here to say how I feel. It helps me be the stress out and I am better for my family that way!! Crystal > > > > Hi Crystal! > > > > How's Eva's teething going? > > I remember you were a bit concerned because she was 8 months old > and > > no tooth shown.. > > > > My Little Warrior Aidan, although 11 months old, should be only > 9.5 > > months corrected, so it's more or less as old as your Eva.. and > > Aidan has no teeth yet either although I can see some bumps ON > > (not " in " !) his gums.. > > > > I also recall that Sally mentioned that her Andy got his teeth at > 15 > > months old or so? > > > > Oh well, I guess is a question of shuffle to the child's body > > development rhythm.. as usual.. > > > > Regards from Ireland! > > > > > > Pat, full of pancakes today! > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 - Yours is a fabulous story of family resilience! What a great dad and husband you have! And what a great couple you must be to have negotiated this non-traditional plan that works for you both. Obviously you talk about the issues for both of you -- that communication is so critical. For you to " let go " of the traditional role of primary caregiver and for your husband to feel comfortable in taking that on -- well, I am tickled to death for you both! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 - Yours is a fabulous story of family resilience! What a great dad and husband you have! And what a great couple you must be to have negotiated this non-traditional plan that works for you both. Obviously you talk about the issues for both of you -- that communication is so critical. For you to " let go " of the traditional role of primary caregiver and for your husband to feel comfortable in taking that on -- well, I am tickled to death for you both! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 - Yours is a fabulous story of family resilience! What a great dad and husband you have! And what a great couple you must be to have negotiated this non-traditional plan that works for you both. Obviously you talk about the issues for both of you -- that communication is so critical. For you to " let go " of the traditional role of primary caregiver and for your husband to feel comfortable in taking that on -- well, I am tickled to death for you both! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 , We have a similar situation to yours. I work full-time (40-50 hours a week), and my husband works about 15 hours a week (basically, when is napping) and he takes care of her most of the day. As much as I wanted to be able to quit work for a while and be 's primary caregiver, it just didn't work out that way--I had the opportunity to bring in the most money for the household (I've been a textbook editor for 18 years now), and that made the most sense financially for our family. My husband and I both work from home, so it can get quite chaotic around here! I'm always on a deadline with various projects, but am often tempted to run down and play with , or being interrupted by her having a meltdown or something, or feeling guilty because I'm working so much and not paying attention to her or giving my husband a break--so I'm always working at odd hours to get everything done. has serious sleep issues, so she and my husband are often up at various times of the night. It seems like there's always a light on in our house and someone up at all hours! We always joke that our neighbors probably wonder what we do--we're always at home, UPS and FedEx are always dropping off and picking up packages (for my work), and there's lights on in our house at all hours of the night--they probably think we're running a meth lab or something! :-) Here's to us working women and the great husbands/dads who take on the role of primary caregiver! , mom to (4) --------------------------------- Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 - Yours sounds like another great household! DJ and I are just figuring out how to make this all work for our marriage so I am impressed by folks to find ways to make it work -- especially those who create new ways of doing things. I feel blessed to live in the era of the internet and so many home offices. Both have been critical to our survivial. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 - Yours sounds like another great household! DJ and I are just figuring out how to make this all work for our marriage so I am impressed by folks to find ways to make it work -- especially those who create new ways of doing things. I feel blessed to live in the era of the internet and so many home offices. Both have been critical to our survivial. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
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