Hello. I don't know why I feel the need to post this but for some reason I do. Maybe someone can give me some helpful words of advice because as of right now, I am not sure where to turn to help my daughter.
On the first day of kindergarten, my daughter met Chelsea. They INSTANTLY became BEST FRIENDS! We lived just around the corner from each other and they played together almost everyday. They took dance together and played t-ball on opposing teams. Chelsea started having shortness of breath, lack of energy etc.. in first grade. After many doctors and tests, she was diagnosed with Primary Pulmonary Hypertension (a terminal lung disease-although advances are being) at the age of 8. Just before her diagnosis, we moved about 30 minutes away but they still kept in touch and were BEST FRIENDS. Chelsea was on MANY meds and had to stop attending school and was "homebound" (teachers would come into her house and teach her) She went from oral meds, to meds administered via a port into her heart, to being listed for a double lung AND heart transplant at the age 0f 12. STILL, they were BEST FRIENDS!!! My daughter went to many of the doctor visits, she even went to NY (from Alabama) for two weeks with Chelsea and her family at the age of 10 (they went to see a specialist in her disease) When Chelsea was listed for transplant, she and her mom moved to Birmingham to be closer to the hospital (heart and lungs have a short time to be viable until transplant) This was about 4 to 5 HOURS away from her dad, brother, and my daughter. STILL, they wrote letters, talked on the phone, and my daughter went to visit Chelsea when her dad and brother went. On July 27, 2004 Chelsea got her new lungs and heart. Several months later, she was able to move back home and the two picked up where they left off with boys, movies, sleepovers,manicures,etc. Chelsea fought lung rejection off and on for two and a half years and on January 31, 2007 she passed away. I was at her bedside with her mom, dad, and nurse. We knew it wasn't going to be long because she went on hospice care at the end of December so my daughter and I spent every weekend in January with Chelsea and her family. I am not sure how my daughter is doing HONESTLY. Some days she seems fine. She will talk about Chelsea, laugh, joke and carry on and other times, if someone says her name or brings up ANYTHING about her, my daughter will get mad, go to her room, SLAM the DOOR and cry. My daughter turned 16 Feb.27 and her party was EXTREMELY hard. She visits the cemetary alot and is very particular about rocks and debris ANYWHERE around the site. My daughter is doing a speech on Primary Pulmonary Hypertension in her speech class. She also doing one to promote organ donation. She has told me that "people at school think it (Chelseas death) is "old news" but IT ISN'T" She has also told me that although she has other friends she doen't have anyone she can talk to the way she was able to talk to Chelsea. She said her other friends talk about stupid/meaningless things like what they watched on TV etc.... I am still in contact with Chelseas family and sometimes I am not sure if they need to know the truth about how my daughter is doing. When they ask I am not sure what to say.....they don't need the worry.....they have their 12 year old son to worry about. I am not sure where to turn for help or if help is even needed. The other night my daughter started gettin mad and I mentioned maybe she needed to talk to someone about it. She agreed she NEEDED to but didn't WANT to. My husband said he would make an appointment and take her anyway and she told him she would hate him forever and wouldn't talk anyway and IF she did it would be a line of BS just so she could get it over with.......not sure what to do there either.
Sorry this was so long........thanks for reading and caring.....
On the first day of kindergarten, my daughter met Chelsea. They INSTANTLY became BEST FRIENDS! We lived just around the corner from each other and they played together almost everyday. They took dance together and played t-ball on opposing teams. Chelsea started having shortness of breath, lack of energy etc.. in first grade. After many doctors and tests, she was diagnosed with Primary Pulmonary Hypertension (a terminal lung disease-although advances are being) at the age of 8. Just before her diagnosis, we moved about 30 minutes away but they still kept in touch and were BEST FRIENDS. Chelsea was on MANY meds and had to stop attending school and was "homebound" (teachers would come into her house and teach her) She went from oral meds, to meds administered via a port into her heart, to being listed for a double lung AND heart transplant at the age 0f 12. STILL, they were BEST FRIENDS!!! My daughter went to many of the doctor visits, she even went to NY (from Alabama) for two weeks with Chelsea and her family at the age of 10 (they went to see a specialist in her disease) When Chelsea was listed for transplant, she and her mom moved to Birmingham to be closer to the hospital (heart and lungs have a short time to be viable until transplant) This was about 4 to 5 HOURS away from her dad, brother, and my daughter. STILL, they wrote letters, talked on the phone, and my daughter went to visit Chelsea when her dad and brother went. On July 27, 2004 Chelsea got her new lungs and heart. Several months later, she was able to move back home and the two picked up where they left off with boys, movies, sleepovers,manicures,etc. Chelsea fought lung rejection off and on for two and a half years and on January 31, 2007 she passed away. I was at her bedside with her mom, dad, and nurse. We knew it wasn't going to be long because she went on hospice care at the end of December so my daughter and I spent every weekend in January with Chelsea and her family. I am not sure how my daughter is doing HONESTLY. Some days she seems fine. She will talk about Chelsea, laugh, joke and carry on and other times, if someone says her name or brings up ANYTHING about her, my daughter will get mad, go to her room, SLAM the DOOR and cry. My daughter turned 16 Feb.27 and her party was EXTREMELY hard. She visits the cemetary alot and is very particular about rocks and debris ANYWHERE around the site. My daughter is doing a speech on Primary Pulmonary Hypertension in her speech class. She also doing one to promote organ donation. She has told me that "people at school think it (Chelseas death) is "old news" but IT ISN'T" She has also told me that although she has other friends she doen't have anyone she can talk to the way she was able to talk to Chelsea. She said her other friends talk about stupid/meaningless things like what they watched on TV etc.... I am still in contact with Chelseas family and sometimes I am not sure if they need to know the truth about how my daughter is doing. When they ask I am not sure what to say.....they don't need the worry.....they have their 12 year old son to worry about. I am not sure where to turn for help or if help is even needed. The other night my daughter started gettin mad and I mentioned maybe she needed to talk to someone about it. She agreed she NEEDED to but didn't WANT to. My husband said he would make an appointment and take her anyway and she told him she would hate him forever and wouldn't talk anyway and IF she did it would be a line of BS just so she could get it over with.......not sure what to do there either.
Sorry this was so long........thanks for reading and caring.....