Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Thanks everyone for sharing what you experienced in relation to other babies being born by friends and family. It really has been helpful for me to understand my feelings. I do feel compelled to share what happened last night in relation to the birth of this same sweet little baby, Mia. I went to the hospital to take the new parents dinner. Mia, the new baby has been put in the NICU for monitoring because her breathing is a bit fast. So, everyone is very worried that something could be wrong. Well, the grandmother of Mia, the dad's mother (not my family member) got up and came to me as I'm holding this bag of food and said, " You know why Kristy is so upset don't you? It's because of Carmen. " and I felt such a sadness that Carmen was Kristy's first thought--that perhaps her condition exaggerated the concern, and I said, " Oh, well you know, Carmen's situation is very rare, and I'm sure things will be fine " or something like that and then the grandmother said, " Well, Kristy worried about it her entire pregnancy. " Well, the tears started pouring down my face before I knew what hit me. I just said I had to go and I left sobbing. I got in the car and felt so sad that the thought surrounding Mia's possible issue might be that she could be like my little Carmen--like Carmen is such a dreaded thought to have. Intellectually I understand their feelings, but as Carmen's mom: I LOVE my little girl, and see her as an angel and a gift--a sweet strong soul with VALUE in the world, and it just devastated me that she would be thought of in this way. I would never tell my cousin that this happened, and I don't believe this woman meant to hurt my feelings, but I think she was just ignorant as to how her comments would feel to " Carmen's mom " . It felt so personal. I came home and hugged my girl, and she initiated practicing her walking again (so determined!) and I said, " Carmen, I am lucky to have you and I am so blessed. Thank you for being in my life, my little brave angel!!! " And I cried and cried some more! Thanks to all of you--without this list I would feel so alone. You understand that while we can be sad for our kids that they've had to endure what they have, we LOVE them and would never want them out of our worlds. Thank you, thank you! B, proud and fortunate mom to Zachary 4.5 years and Carmen 20 months (CHARGE) > > Dear - > > I have had this happen to me several times since 's birth - each time > unexpected, each time more intense than the last. For me, I see it as > unprocessed grief - grief that I didn't allow myself time for because it is > how I managed to deal with things that needed taking care of at the time - > or grief that I had accepted certain qualifications to my CHARGE son's life, > and then to have them surpassed beyond my wildest dreams. Or dreams that > came true that I never knew I had not allowed myself to dare dream... and > the grief that goes with that. > > Bless and love your heart for all it does to make this time whole....to > accept what is and to make good of it, no matter what. > > love and hugs- > > yuka > > > Effect of family birth after my daughter's dramatic birth > > > > Not sure if other's have experienced this, but the other night, I got > > a call that my cousin was in labor with her baby. She has asked me to > > be the Godparent for her little girl, and I had all along planned to > > be at the hospital for the birth (my family is large, and we all sit > > vigil while someone is having a new family member!) At any rate, I > > was on my way to the hospital (alone) and all of a sudden just started > > crying such a deep emotional cry--I honestly was surprised at myself. > > I think I must have been grieving the happy birth process that I > > didn't have with Carmen, who was born so tiny, not breathing, and gray > > in color. I don't think I've really ever cried out since her birth, > > as I'm very action oriented and have been so focused on all of her > > needs. The reaction I had to my cousin's birth process really hit me > > hard--it was like I finally realized how sad I was that I didn't have > > a joyous moment for my daughter when she arrived. I think it provided > > some closure, really. Anyone else have this happen? > > > > B. mom to Zachary 4.5 years and Carmen 20 months (CHARGE) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 You know, Aubrie is my only girl and there is some sadness in thinking of some mother-daughter things we may never share -- like if she can't have children of her own. But there are huge pluses. She will never be a catty, b****y girl. It's just not in her nature. There are lots of silver linings to having her just the way she is. So I delight in them and ignore the other stuff. There's really not that much that we're " missing " -- we do all the same things we'd do otherwise -- we just may do them differently. So maybe you could reply with a silver lining of your own and the fact that you have all the love and relationship of any mother-daughter -- even more intense. 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 17, 2006 Report Share Posted March 17, 2006 You know, Aubrie is my only girl and there is some sadness in thinking of some mother-daughter things we may never share -- like if she can't have children of her own. But there are huge pluses. She will never be a catty, b****y girl. It's just not in her nature. There are lots of silver linings to having her just the way she is. So I delight in them and ignore the other stuff. There's really not that much that we're " missing " -- we do all the same things we'd do otherwise -- we just may do them differently. So maybe you could reply with a silver lining of your own and the fact that you have all the love and relationship of any mother-daughter -- even more intense. 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 17, 2006 Report Share Posted March 17, 2006 Sometimes people just don't " get it " . It's hard sometimes, but I just try and remember that they just really have no way to really ever understand what we've been through or how unbelievably amazing our children are. I kind of feel sorry for them in a way - they may never know the love or enlightenment we have experienced by having these wonderful kids in our lives. Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Sometimes people just don't " get it " . It's hard sometimes, but I just try and remember that they just really have no way to really ever understand what we've been through or how unbelievably amazing our children are. I kind of feel sorry for them in a way - they may never know the love or enlightenment we have experienced by having these wonderful kids in our lives. Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Sometimes people just don't " get it " . It's hard sometimes, but I just try and remember that they just really have no way to really ever understand what we've been through or how unbelievably amazing our children are. I kind of feel sorry for them in a way - they may never know the love or enlightenment we have experienced by having these wonderful kids in our lives. Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Oh last week i had to bite my toung. two coworkers were talking and one said oh dont bother making a baby blanket for that lady cause the baby has downs. The co worker told me her friend was thinking of having an abortion cause she found out she was pregnant with a downs syndrome child. Its been upsetting me most of the week cause i thought that was so horrible. I dont know what was worse, how my one co worker made it seem like having a special needs kid was the worst thing in the world or the fact that the lady was considering having an abortion. However i think i can understand. I have fantisized about killing myself many times. Who wants to have a person around with many dissabilities. My behavioural stuff makes me so hatefull maby its better off if i was dead. My medical stuff is so complicated and overwealming that even the doctor dosnt even know what to do with me. I dont think many people would miss me if i was gone. I know my mom wouldnt care. All the times ive heard her say that god punished her. That it wasnt fair that she got me when there are crack addicts that have perfectly normal kids. Its fine if deep down you have those feelings. I think everyone does, just please dont say to your kid you wish they were never born. Please dont blaim anyone for their dissabilities. Its not moms fault you got charge, its not dads fault you got charge. God (wichever you belive in) did not cause your charge. Its just the chomosomes not behaving like nice little chomosomes should.. We chargers internalize everything. I still find it hard to trust people. Specialy since I get attached to someone who is helping me weather emotionaly or just being a friend and they suddenly dissapear out of my life without so much as a goodbye. Or I get medical people or councellers who just pass me off to the next professional. I know my sa counceller is only a 14 week session. I dont know how short or long term the psyc stuff at the hospital will be. I just feel so complicated. I dont think its wrong to wish we would pass away painlessly. I think thats like wishing our pain would go away. I dunno i just feel mixed up atm. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Oh last week i had to bite my toung. two coworkers were talking and one said oh dont bother making a baby blanket for that lady cause the baby has downs. The co worker told me her friend was thinking of having an abortion cause she found out she was pregnant with a downs syndrome child. Its been upsetting me most of the week cause i thought that was so horrible. I dont know what was worse, how my one co worker made it seem like having a special needs kid was the worst thing in the world or the fact that the lady was considering having an abortion. However i think i can understand. I have fantisized about killing myself many times. Who wants to have a person around with many dissabilities. My behavioural stuff makes me so hatefull maby its better off if i was dead. My medical stuff is so complicated and overwealming that even the doctor dosnt even know what to do with me. I dont think many people would miss me if i was gone. I know my mom wouldnt care. All the times ive heard her say that god punished her. That it wasnt fair that she got me when there are crack addicts that have perfectly normal kids. Its fine if deep down you have those feelings. I think everyone does, just please dont say to your kid you wish they were never born. Please dont blaim anyone for their dissabilities. Its not moms fault you got charge, its not dads fault you got charge. God (wichever you belive in) did not cause your charge. Its just the chomosomes not behaving like nice little chomosomes should.. We chargers internalize everything. I still find it hard to trust people. Specialy since I get attached to someone who is helping me weather emotionaly or just being a friend and they suddenly dissapear out of my life without so much as a goodbye. Or I get medical people or councellers who just pass me off to the next professional. I know my sa counceller is only a 14 week session. I dont know how short or long term the psyc stuff at the hospital will be. I just feel so complicated. I dont think its wrong to wish we would pass away painlessly. I think thats like wishing our pain would go away. I dunno i just feel mixed up atm. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Oh last week i had to bite my toung. two coworkers were talking and one said oh dont bother making a baby blanket for that lady cause the baby has downs. The co worker told me her friend was thinking of having an abortion cause she found out she was pregnant with a downs syndrome child. Its been upsetting me most of the week cause i thought that was so horrible. I dont know what was worse, how my one co worker made it seem like having a special needs kid was the worst thing in the world or the fact that the lady was considering having an abortion. However i think i can understand. I have fantisized about killing myself many times. Who wants to have a person around with many dissabilities. My behavioural stuff makes me so hatefull maby its better off if i was dead. My medical stuff is so complicated and overwealming that even the doctor dosnt even know what to do with me. I dont think many people would miss me if i was gone. I know my mom wouldnt care. All the times ive heard her say that god punished her. That it wasnt fair that she got me when there are crack addicts that have perfectly normal kids. Its fine if deep down you have those feelings. I think everyone does, just please dont say to your kid you wish they were never born. Please dont blaim anyone for their dissabilities. Its not moms fault you got charge, its not dads fault you got charge. God (wichever you belive in) did not cause your charge. Its just the chomosomes not behaving like nice little chomosomes should.. We chargers internalize everything. I still find it hard to trust people. Specialy since I get attached to someone who is helping me weather emotionaly or just being a friend and they suddenly dissapear out of my life without so much as a goodbye. Or I get medical people or councellers who just pass me off to the next professional. I know my sa counceller is only a 14 week session. I dont know how short or long term the psyc stuff at the hospital will be. I just feel so complicated. I dont think its wrong to wish we would pass away painlessly. I think thats like wishing our pain would go away. I dunno i just feel mixed up atm. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Your absolutley right! I often just think to myself " these people just don't get the true meaning of life,.... it's to love one another....with or without dissabilities. It's the little things that are important " . Its funny but ever since I had Alissa, my relationships with friends and family has dramatically changed with both family and friends. People are worried about not getting there hair done or the garbage guy not picking up all there garbage.... who cares !!! Enjoy each day with your families cause life is too short! > > Sometimes people just don't " get it " . It's hard sometimes, but I just try > and remember that they just really have no way to really ever understand > what we've been through or how unbelievably amazing our children are. I > kind of feel sorry for them in a way - they may never know the love or > enlightenment we have experienced by having these wonderful kids in our > lives. > > > > > Weir > kawfolks@... > http://ca.geocities.com/weirfamily@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 you could ask ur cousin if she really thought taht coz if she did its a realy bad thing all families have worries love u > > Your absolutley right! I often just think to myself " these people > just don't get the true meaning of life,.... it's to love one > another....with or without dissabilities. It's the little things > that are important " . Its funny but ever since I had Alissa, my > relationships with friends and family has dramatically changed with > both family and friends. People are worried about not getting there > hair done or the garbage guy not picking up all there garbage.... who > cares !!! Enjoy each day with your families cause life is too > short! > > > > Sometimes people just don't " get it " . It's hard sometimes, but I > just try > > and remember that they just really have no way to really ever > understand > > what we've been through or how unbelievably amazing our children > are. I > > kind of feel sorry for them in a way - they may never know the love > or > > enlightenment we have experienced by having these wonderful kids in > our > > lives. > > > > > > > > > > Weir > > kawfolks@... > > http://ca.geocities.com/weirfamily@... > > > > > > Quote Link to comment Share on other sites More sharing options...
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