lost

lost

New member
<img src="i/expressions/brokenheart.gif" border="0">i have read some replys on here .i lost my son 1year ago jan25.he was my best friend need someone to talk to.i am new to site.can someone please help me
 

Emily65Roses

New member
I have yet to be a mother, but if you want to talk, I'm around. Anytime you like. Feel free. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Hi There
So sorry to hear that you have lost your son. I am the mother of a beautiful 18 year old daughter who has CF and my heart goes out to you and all others who have lost their children. How old was your son and had CF given him lots of problems his entire life? I don't know what to say except that I am sure he would want you to have many happy moments. I can't imagine losing a child and can only say each time that the cloud lifts, I hope you remember him with a smile and take that opportunity to grab those times. My thoughts are with you.
TJ
 

lost

New member
<img src="i/expressions/brokenheart.gif" border="0">my name is rick.i lost my son 1year ago the 25 jan.his cf was very sever from birth.he went through alot in his short 17years.when he passed he said he was ready and made peace with his god.i am not at peace everyday i wake up without himits like more of my heart is torn out.dustin was my best friend,my bud my reason to go on.watching him go through the things he did without cryingor complaining would just blow me away.iasked him why he never cried,he said he didnt want to see me hurt,that just tore me up.i wish he was here i could use some of his strength.im having hard time writing this,but some say it might help,so im trying.if anyone could help me hereineed to chat with someone who understands.i pray to god every night no more children pass from this and that a cure is coming.i would give every thing i have if it could be done to make all of you better.my email is mullins768@aol.com.cant figure uot how to chat.thank you all and god bless all you angels
 

anonymous

New member
Hi Rick,

I am so sorry to hear about your loss. Have you considered seeking bereavement counseling? i feel that this would be beneficical to you. I also have Cf but am doing ok thank god! Take care! Dee
 

KatieSam

New member
Hi Rick
I was so sad to hear of your loss of your dear son and friend. May I be bold and say I really think you sound like you need to speak to someone professional about what you are going through. Reaching out for help is so hard, but sometimes we need others to help us get through when we can't see a way forward. I would like to say the following things to you and I hope they help in some way.

I am certain that your son would not want for you to continue to hurt as badly as you do now. It is VERY early days for you in your grief, but try 'compartmentalising' your life a little. That is, make time to grieve, but try to give yourself time limits on how much you sit and think about your loss, then pick yourself up, if only for a few hours and make the conscious decision to go back to life for a while - then you can come back to your grief again later. gradually, the time you spend grieving will become less and the time you spend back in life will increase. Beleive that this is what your son would want for you.
Your son was sent to you for a reason. I am certain that you and the others around him learned something from his life and from his passing. Sometimes, we need to decide not to question why we are given these challenges, but simply accept that it is something we were chosen for.
Grief is like a fingerprint - everyone feels and expresses it differently. Don't beat yourself up for the way you are feeling
Grief is more than simply a series of stages to go through. It may be something that continues to touch you for your whole life - but that doesn't mean that you will be this sad for your whole life. You will come to accept what has happened in time. You don't have to 'get over it' though. Your aim should be to find a way to live with what has happened, not to 'get over it' . Cherish your memories of your son and the place he will always hold in your heart
You can make choices about how you deal with your loss. Talking, crying, sharing memories, writing a journal, reading, music, exercise, praying and distracting yourself all help some people. Find out what works for you and make time to do it.
Things WILL get better - grieving is very hard work. It takes a lot of courage and patience. There are good days and bad days. take heart - you WILL get through this.

Kate

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Shayla

New member
Rick,

I'm sorry to hear of your loss. I greatly feel for you. Although, I have not lost a child, I have lost two siblings to CF. My eldest brother died six years ago the 29th of January. My sister will be gone three years in June. I wish I could say that you eventually forget and it never hurts, but I still have good days and bad. I wasn't that close to my brother we were fairly far apart in years, but I still remember the fun we had together. My sister was my best friend. I could talk to her about anything and she always seemed to know what I was going through. I still have days that I want to just sit and cry, I just remind myself that where ever she is, she no longer has to deal with the complications of CF and I know she would want me to be happy. She was ready to go, a couple of days before she passed she said that she was just tired of fighting. She just wanted to rest. I wish I knew what to say to make everything better, but I think everyone has to handle it in their own way. Feel free to talk hear anytime. People on this forum are really go listeners, and they can give great advice.

-Ann 25 w/CF
 

anonymous

New member
When I was at my darkest, my lowest, when I had hit bottom emotionally, I found God. He is the only one who can get you through this. The only one. I am so sorry for your sadness. I hope you will find peace.
 

anonymous

New member
I lost my daughter on October 23th 2004 to CF. I am still having a hard time with it too. She was 22 years old and it happened so fast. I miss her lots.
 

anonymous

New member
To the last post. So sorry to hear that you have lost your daughter. You said it happened so fast. If you feel comfortable with it, can I ask how fast. Was it something you never expected so soon? Was she always unwell? Was it her lungs? Did she work at all from school to age 22. Did the Dr's give any indication that her health was deteriorating? There have been a few people I have spoken to recently who have lost their young
adults who went downhill quickly. It is scary, particularly as my 20 year old daughter feels she is doing ok and is not doing any exercise or making any special effort to look after her health. She takes her meds pretty well I think, has nebs and does her drainage BUT it scares me that people with CF can go down so quickly. It motivates me to get her motivated bUT I can only encourage her to do more.
I honestly don't know how you guys get by.. one day at a time I suppose. My heart goes out to you.
May the beautiful memories you have help you through...
 

anonymous

New member
The last year of her life it seemed when she went to the hospital it took her longer to feel better and her lung function would not go up as much as the doctor would have liked. She was going to school to be a nurse and I think she pushed herself too much. The last time she was in the hospital two weeks and she kept telling me she was not getting better, I think she knew she was dying. The tuesday before she died she told my mom she was not leaving the hospital. She went on the respirator on Thursday morning and by Saturday morning she was gone. It was the hardest experience of my life but the all the family was there when she took her last breath and we got to hold her hand and tell her goodbye. In the end all she worried about was everyone but herself. CF kids are really special and never complain. She donated her body to science because she said she had the Cf so bad that maybe they would find something that would help someone not to go through what whe did. My daughter was special and I am glad she was in my life. One day I hope a cure is found so no one else has to go through what I went through. I still miss her very much and miss the things we did together but she is in a better place and has no more pain.
 

anonymous

New member
Thanks so much for sharing that. I cant even begin to imagine how heartbreaking it must be. You mentioned that your daughter told your Mum she wasn't going home. It must be devastating for the Grandparents as well. I know my Mum has been there for my daughter for nineteen years and she feels everything my daughter goes thru. Did the doctors indicate that your daughters health was deteriorating so quickly. Was she ever considered for a transplant? Did your daughter ever talk about maybe dying young before it all happened so quickly? My daughter works full time, pushes herself and seems to do ok most of the time BUT she get extremeley tired but we can't stop her from trying to achieve her goals. Its hard not knowing whether to suggest she takes it easy or letting her push herself with the possibility of it affectng her health. When she was a baby and started off with a new set of lungs, we could look after her, encourage her to excercise etc and didn't really focus years ahead. Now that all the years have gone and her health has slowly deteriorated it is scary.
I have enjoyed hearing from other parents of adults and appreciate your input.
 

anonymous

New member
When she became an adult she kept a lot the doctor told her to herself. After she died the doctor told us he told her 2 years before she died that he had told her she had about 2 years left. She had CF really bad that it affected her lungs and pancreas. The last year she had to take insulin. She was working on checking in to whether she was a candidate for a transplant but I think it would have been really hard on her. I know its hard but I know with my daughter that she wanted to live life to the fullest and she would not have been happy not doing the things that she enjoyed and wanted to do. A few months before she died i paid for her to do to mexico with my sister, she really enjoyed the beach. I found out from my other daughter after she died that she really wanted to go to Hawaii and I wished I had known because I would have made sure she went. All I can tell you is just be there for her and love her. The thing that really still bothers me is how hard it was on her knowing she was dying and dealing with it the way that she did. She is the one who decided to donate her body to science and had it all set up. She did have a really good best friend that helped her a lot. She had a boyfriend that she pushed away because he was getting to serious and he was there for her in the end. I hope that I have helped you and just sharing her story helps me. Just make sure you tell her all the time that you love her because sometimes in our busy lives we forget to say the words.
 

anonymous

New member
your daughter sounded like she was a tremendous person and mature far beyond her years. I know it is hard to understand the way your daughter kept secrets from you. We all do this... we just don't want to worry our loved ones. She did it for love not for spite.

I am sorry for your loss.


luke 29/cf
 

anonymous

New member
Wow.
My kids are nineteen (with CF) and fifteen years(carrier)
My husband and I were just discussing how little she tells us about her health. The other night I was listening to her cough all night and it's that same old feeling like there is a shark lurking and we never know when it will hit. My daughter has been exhausted most nights after work and isn't doing any exercise. When I do encourage her out for a walk, she gets home with a rotten headache. When she saw her resp dr last wk I thought she would be admitted or at least change meds but she just says No everything is fine, i'll see him in 3 months. Its a worry what she tells him and vica versa.It saddens me that she no longer takes part in any physical exercise and just plods along. In the past she has played sport, gym, personal trainer,swam but she now does zilch although she does do her meds, nebs and postural drainage. Even if she didn't have CF I would hope she would do some exercise. I think she should give it her absolute best shot. Anyway, I said to my husband last night "do you tell the kids much anymore that you love them" He said Yeah but probably not as much as I should. When they were little and growing it comes so easily then when they turn into monsters at any time from 13 its not easy when they argue, grunt, won't listen, get embarrased and think we know nothing. They don't cuddle up on the couch like they used to and are always on the run. BUT I WILL TELL THEM MORE OFTEN, even if they appear not to want to hear it. My kids know I adore them, support them and would do anything for them and I will tell them how much they mean to me more often.
Thanks You Sooo Much - May all the wonderful memories you have of your girl, visit you everyday
 
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