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HIV Life >> Living With HIV

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Lovinlife
Fanatic

Reged: 08/29/08
Posts: 63
enough on my plate already with HIV...
      #245008 - 03/18/09 04:26 PM

My newborn baby boy was just diagnosed with Cystic Fibrosis. Am feeling a bit sad about it. Funny though...when I went in to get the lab results I was thinking, "There's NO way these can be positive. Dealing with HIV is enough. The universe/God/whatever won't add watching my child suffer through Cystic Fibrosis to my plate"...and yet, here we are. Ah well, on a positive note--my newborn baby boy is HIV negative!!!

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: enough on my plate already with HIV... new
      #245017 - 03/19/09 08:58 AM

Lovinlife.

I'm so sorry to hear the news of your son's Cystic Fibrosis. I'm can't imagine the pain for you from this type of diagnosis.

I know some say that God will never give us more than we can handle, but at a time like this I'm sure you feel that perhaps God has gone off on vacation.

I believe we all choose our lives before we arrive and some of us choose a harder than necessary life. Think of it as being in an accelerated class about compassion. People that choose these harder paths are special souls that are fulfilling an extraordinary destiny

From your past posts I have a sense that you will certainly be able to rise up to this and handle whatever comes before you.

I'm sure you have already done an Internet search but I have added the link to the Cystic Fibrosis Foundation.

http://www.cff.org/



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Lovinlife
Fanatic

Reged: 08/29/08
Posts: 63
Re: enough on my plate already with HIV... new
      #245084 - 03/23/09 01:39 PM

Thanks so much for your post. and i did check out the link. I've been really hesitant to look up anything about the disease before seeing the specialists. It is difficult to maintain a positive outlook and at times I do feel bitter--like God is picking on me. But--I should be and am still thankful that my newborn is HIV negative. At least he only has to handle one disease! It's heartbreaking to think of watching him suffer as he grows. I can barely stand it. I was talking to my mom about it and saying I don't think I am strong enough to watch my baby suffer and she said, "Now perhaps you know how I felt when I heard your HIV diagnosis." Life is funny that way.

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Florida69
Legend

Reged: 02/19/07
Posts: 541
Re: enough on my plate already with HIV... new
      #245118 - 03/25/09 10:19 AM

T, I am so sorry to hear about your new born babies diagnosis with Cystic Fibrosis. You are an amazing soul, the one thing that makes me grateful that I never had children, is I have a hard time watching any child suffer. I know this may not offer much solice, but know that my heart is with you at t his news. I know you are trying to be upbeat and grateful at this time, and it seems everything is impossible. You are stronger than you give yourself credit. We have a couple of things to be grateful for, that is that this is not 50 years ago, and with the new medical advances we are about to embark on with stem cell research, etc. a cure may very well find us in your sons life time. Your baby has so many things that many children do not, that is a loving caring mother that will go to the ends of the earth to care for him. I for one am grateful that he has you, as he struggle may be hard, but I have a feeling that you will help him over every single milestone and struggle. Again, girl know that my thoughts and prayers are with you, and know that you are loved. HUGS.. D

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Lovinlife
Fanatic

Reged: 08/29/08
Posts: 63
Re: enough on my plate already with HIV... new
      #245235 - 04/03/09 11:46 PM

D-
I was hoping to hear from you. Thanks so much. I try not to let my other kids see how scared I am and I try not to be upset when I'm around my new little one. But--the thought of potentially watching him suffer is so damn terrifying. I just crumbled after the diagnosis and my husband kept asking why I wasn't being more of a fighter. Honestly D...I'm a little weary of fighting medical stuff, ya know? But--it's really the only way to be. We've seen two specialists already who, naturally, sent us a huge bill after the initial appointment and then were completely unavailable to answer any of our follow-up questions. So...thank goodness for "Google!" I am keeping my hopes pinned on all the medical advances--stem cell, gene therapy, etc. But, I have those moments where I tell my husband I just need 15 minutes. I go and have a good cry in the bathroom, slam a few drawers, kick the tub (ouch), doors, and curse and then go back downstairs to be with the family. Please do keep us in your prayers. I have strong faith and really truly believe in the power of prayer. Maybe it won't cure, but it'll give me some extra strength to not get all feeling sorry for myself and whiney!!!! I hope medicine can catch up and kick all the horrible diseases to the curb.

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Dreamer76
Regular

Reged: 04/06/09
Posts: 38
Re: enough on my plate already with HIV... new
      #245249 - 04/06/09 03:38 PM

Dear lovinlife,

I`m so sorry to hear about the news of your baby boy`s diagnosis.
I`m a 32 year old male and diagnosed very recently (20 Mar) with HIV. I found this site and turn to it now all the time, the stories of people`s strength and courage helps and comforts me in dealing with my feelings of despair, pain and regret.

Your story touched me in particular , my 8 year old nemphew has CF. Over the first few years, my sister cried alot... it`s good to have a good cry.. helps evacuate some of the pain... i`ve just found that out for myself.!!
Anyway, my nemphew is such an adorable kid, since his birth he hasn`t been too sick or had many stays in hospital.. he knows how to take his own medication, he goes to school , plays and gets on with life like the other kids.
he has a younger and older brother (both untouched by CF) and he has more humour, attitude and fighting spirit than his 2 brothers put together!!!
It`s a long , tough road with sad moments... but lots and lots.. and lots of happy ones!!

He has brought so much joy into our lives.... your son will too!!!

Keep Strong , Best wishes,

Dreamer76

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