does anyone else have dark thoughts???

[JRPandTJP]

Riza, yes that is the technique. I found it very helpful in finding the feelings and releasing them.

Janet, don't be ashamed at all for being honest about the thoughts. I have some doozies too...in fact I had an experience that still remains vivid in my mind today. It was shortly after diagnosis and we were finally off ng tube and trying to be a "normal" family again. I was looking into the video eye piece of something I had just recorded. Suddenly, I felt as if I was an old woman looking at a piece of video just knowing Ben was gone. It totally freaked me out and I ran to the bedroom, could hardly speak to me husband. Fear and uncertainty can creep in when we are grieving or recovering or just having trouble accepting how great things really are right now. We all on some level want to avoid death and suffering for anyone we love.

Ben (that is my little boy's name too), thank you for a perspective that is very important to have. I have often tried to remind myself that I MUST not let CF become to big in our lives. He doesn't know he is different and I feel he picked us as the people he wanted to be wiht on his journey. I never have a say in how long the journey is for me, for my parents, for my children...all I know that each day on the journey is a gift. Seeing Ben for who he is and not for what he is labeled with is a task I try not to take too lightly. I will not let this limit our lives, I will let it expand me beyond my previous perimeters and further. Honoring grief and saddness has a part in this process as well...keeping it from my children is something I try to do most of the time. Sometimes I think it is enough for them to know I am sad and just need some space. Thank you for what you wrote...it made me cry (in a good way). You are very wise.

I am going to send you all a card I bought myself shortly after dx. I hope it helps you as it did me. Look below. Jody

 

[JRPandTJP]

From a grocery store card:

Sometimes a little baby's born
Who needs some special care
From someone who's exceptional
And unafraid to share
It must be someone patient
With an understanding mind
Somebody with a lot of love
Who's gentle, good and kind
It takes a special parent
Not just anyone will do-
That's why this little angel
Was so wisely sent to you.


Angelas: You are in my thoughts tonight. May your daughter find peace and may peace be given to you as well.

Jody

 

[LisaV]

Jane, your write "I would never, ever tell my kids, or even my husband".

I understand why you say this, but do you ever wonder if your kids and husband also have the split thought experience? If, like you, they would be comforted to know that someone else (you) thinks this way too? That you all would be comforted to know that you share this experience?

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>

That you all would be comforted to know that you share this experience?</end quote></div>

Or they could think their mother/wife is a wacko.<img src="i/expressions/face-icon-small-confused.gif" border="0">

Seriously, my husband and I have mentioned it happens with both of us, but no specifics.

 

[LisaV]

Jane writes
"Or they could think their mother/wife is a wacko"


LOL!

The boys (as teenagers) probably all ready think that

I was mostly thinking of your husband.... so it's nice to know that you've all ready done that.

take care.

 

[mistylavon]

I feel these thoughts too. My daughter was diagnosed 5 months ago and I can only think about 1 day at a time. We do her daily treatments and meds and that's as far as I think. I get too emotional otherwise, like now, I've been teary-eyed reading this entire thread.

Angelas - I'm so sorry your going through this loss. I've said a prayer for you, your daughter and family. I hope your daughter is ok and peaceful through this process.

 

[kayleesgrandma]

Oh you guys, I think I'm going to have to stop reading these posts in the morning after a long night at work--I'm tired and become so emotional. I too have dark thoughts, and guilty thoughts also. I hate to think that I may outlive my granddaughter, then I'm feeling guilty 'cause I'm glad it's not her mother (28yrs)that has it. I'd probably be in Angeles shoes right now also, so I'm glad for the new therapies to help Kaylee. Angeles, my heart is breaking for you, I'm so sorry. You and Crystal are in my prayers.

 

[JazzysMom]

As its been said I think its "abnormal" not to have these thoughts. Even if one doesnt have a chronic illness in their lives its normal. We are human & the one thing that we are born to do is to die. I will honestly say that a lot of my activities (by myself or with others) always has a passing thought of "how many more times will I do this or will I be on O2 to do this soon etc." If I have progressed to the next level I wonder how soon until the next level. It can be something simple like going from iv's to picc lines or just changing meds. Its just something "new" and new to me means progression.Then it passes until the next activity. Oddly I have these thoughts more when I am well then when I am sick. Maybe I am not distracted by being sick or I just have more time on my hands. Its hard.....if I have my moments I try not to let Jazmine or Robert see them. I dont want them to worry prematurely or live in a constant "panic" because of my thoughts. I know Jazz has passing thoughts because she will ask me things & I will answer them. The key is not to dwell or let the dark thoughts interfere with life. When they interfere is when they win & take over!

 

[momofjosh]

angelas:
I just saw your post and it hit home! I just lost my 21 year old son in Jan. I don't know how things are going right now but you can always talk to me. We also had Hospice at home per Josh's wishes. I am very glad we did it thay way!! It is hard to find any comfort at this time. But know that your daughter's pain and suffering are coming to an end. Josh slept most of the 6 days Hospice was at our house. We had many, many people coming to see him... and I know that is what he would have wanted. My thoughts and prayers are with you and your family. You are right , you think about this moment all of your child's life but when it happens you really are not prepared. Please talk to me anytime!!! I know EXACTLY how you are feeling.
Kathy

 

[sarabeth87]

As a person with CF, I have 'dark thoughts' probably every single day. I won't go into how I feel, because it's probaby worse than the CF itself, but anyways.... I don't know how my mom feels, but everytime CF is even bought up, she gets all teary eyed. It kinda hurts me though, because I can't talk to her about how I feel. I'm sure she feels a lot worse than me, because if our roles were reversed and she was the one with CF, I would probably feel 10 times worse than I do now. Anyways, if when your son gets older and may want to talk about it, be there for him and don't try to avoid the subject.

 

[amber682]

    I know this is sort of an older post, but i
know what u'r saying. I feel sad about it
sometimes, especially at night when everyone else is sleeping,
or when my son gets sick or cultures for something. Even after
going to a friend's house with the same age baby. She can just give
her dinner and a bath and off to bed. No pt, no creon, no meds or
vitamins. I think I'm sort of envious. I know it sounds awful, and
I'm so thankful my son has only had one serious hospitalization.
When I was at the children's hospital I saw other children and
their families who had it so much worse.<br>
    I don't know why i don't really tell anyone
my worries and fears, not really even my husband. I guess I just
don't want to make everyone else sad. I don't even like to look at
the picture my son had taken with the easter bunny at the mall
because it was just like 3 or 4 days before we ended up in the
hospital for RSV ( and eventually diagnosed w/ cf. )
  I look at it and think, "I had no idea what was
coming."<br>
    Sometimes I think I should see a counselor
or something. I especially worry about the future. I can't try
to protect every family member but I don't want to depress anyone
either. I guess it's cuz I'm the one who does all the dr. visits
and pt and meds since I stay home and my husband works long hours.
I feel kinda alone sometimes because everyone else knows he has cf
and takes it seriously, but I'm the main one that actually deals
with it. Everyone thinks I"m so calm and collective about it,
but inside I'm crumbling.<br>
    Sorry I'm rambling on, but literally just
reading these posts made me cry, never mind writing my own.<br>
    By the way, how does that prayer go about
accepting the things you cannot change and changing the things
you can and knowing the difference? 

 

[welshgirl]

i'm so glad i started this topic. ( misery loves company!!!!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">) it does make things easier if you know you are not alone. i was ashamed and embarressed about the thoughts that i have and now i know i am not a weirdo i feel better!!!!!!!!!!!! i do talk to my husband but he is very different to me , he is cool and controlled and i am definately not<img src="i/expressions/face-icon-small-blush.gif" border="0"> take care everybody<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[LisaV]

That prayer goes:

Grant me the serenity to accept the things I cannot change.
The strength to change the things I can.
And the wisdom to know the diffference.

I think people are lonlier than they need to be with this. I suspect that everyone in the family is having dark thoughts sometimes and keeping it from each other. Time spent with a good counselor (separately and as a family) could really help with this in my experience. CF is so isolating for a family - no need for to separate family members from each other as well.

 

[Ratatosk]

I've mentioned this before, but the easter bunny photo comment brought back memories of when DS was in the NICU for the first month on life recovering from bowel surgery. When we'd go for lunch at the cafeteria a couple of times a pregnancy class would just be getting out and I would feel so angry at those perfect pregnant ladies and their perfect babies. Now I'm sure some of them probably did have problems after their children were born, but for a brief moment I would feel pure rage at them, just wanted to smack them. Kinda like road rage. That and Sarah Jessica Parker -- couldn't stand watching her on tv anymore because she had a perfect baby boy the same time DS was born and I was p.o.'d about that too.

Also, don't know if it was post partum depression or what, but several months after DS was born, I would almost hope <u><b>I'd</b></u> get sick with an appendicitis or something that would require me to be hospitalized because I just wanted to escape and wanted someone to take care of me for once. Thank goodness I learned to "suck it up". But those insane thoughts when one is overly tired and stressed in the middle of the night are kinda crazy.

L

 

[kayleesgrandma]

Yep, the part about the photo got me too. I remember the pics of Kaylee before we found out she had cf, and she looked so pale and tired. We don't like to look at them either. Life before, and after--world's apart.

 

[amber682]

Every time I read these I cry, but I feel better after, not so
alone. And before Vincent was diagnosed we had <span style=
" text-decoration: underline;">no clue what was to come. He
was not sick, was gaining weight and seeming perfect. It was only
when he was hospitalized for RSV and just did not get better aftre
1 month in the hospital and 2 times to the PICU  that he was
finally diagnosed. So in the easter bunny photo he seems so
healthy, but you are right, it is still worlds apart.<br>
    Anyway, I guess I'm not the only one who
thinks these thoughts about the future, or past, or whatever, and
doesn't want to tell anyone because I don't want to depress them
too. And Janet, my hubby is just like yours. He's so calm
about it all and doesn't seem to worry anywhere near as much as I
do. (or maybe he does but just doesn't tell me either!)<br>

 

[JRPandTJP]

oh god the photo thing. I was innocently looking through some photos in search for a few to do a photo board for Ben's 2nd birthday. I know generally was aged photos I should avoid because there are a few that horrify me (swollen face, pale, rash all over his tiny body). Bammm, there were some I hadn't even seen before on a CD from my dad's camera. I about lost it and it sent me back for a few days. How could I have not done more for him, how could the doctors not done more, why did he have to suffer, why not me, why can't I take it away, why, why why!!!

My husband and I just talked about this very thing the other night...how when something is weighing on his heart about work or Ben he just doesn't want to mention it. It is like we don't want to off set this delicate balance we've found once again...which of course is an illusion because just a cough in a store can trigger panic sometimes or explaining why he has to take enzymes to my daughters friends. I protect him from my pain so I don't drag him down, but I do go to a counselor once a month to talk things out, even non-CF things.

I have found the grief comes and goes and it has faded alot after working with her. I alos try and do new and fun things for myself to help take myself out of the rut of daily stuff (like learning guitar, taking a one day art class, reading a good book). I try to ask myself if there is really anything I need to think/do/feel RIGHT NOW? In this moment what is needed of me...usually nothing it is just the mental noise trying to suck me away from just being in the present moment. Don't know if that makes any sense at all but this is how I think when I am really stuck.

We are all doing our very best everyday and we all have alot on our plates, we must take care of ourselves so we can continue to care for others. Thank GOd for the internet is all I have to say!!! Anyone else mediatate for 10 minutes before bed or say positive affirmations? Jody