Help me get rid of my greatest fear…any orphans out there?

Dearest Deb I think for all of us moms this has got to be the worse fear......first of all your daughters would not be orphans because they have their dad and your parents but of course no one and I mean no one could take your place.........there was a mom here in Dallas in the mid eighties that had stage 4 cancer and what she did for her daughter.........I think when she finally passed her daughter was around 12 she had made audio tapes for each of her birthdays telling her what she would have said if she had lived......you know about boys, turning 16, learning to drive, graduating from high school, going off to college.......anyway you get my drift........if fact Oprah had her on her show a couple of times and then several years later she had the daughter back on her show when the daughter was getting ready to get married.....very moving to say the least..........the mom took a couple of years and just journal everything she could think of to tell her daughter.........I still think at times like last month I really need to do this not just because of the cancer but you know Deb you just never know when you may tell your children have a good day at school and never see them again.............Deb you have never really talked about your girls too much but when ever I have visited your blog your pictures say everything about what they mean to you...........Shokk

Deb....I certainly hope your scare turns out to be just a scare.  I don't post much, but I read threads frequently.  I have always admired your upbeat attitude and the ability to say the right things at the right time. 

I lost my mother shortly before my 17th birthday.  While I must be honest and say that the loss did cause problems in my life, I got past them and think I became stronger from them.  My Dad was an alcoholic and my mother committed suicide, so there were other issues at play.

From your posts, you seem like the kind of person who has given your children good values and have been a good mother.  I think kids are a lot more resilient than we think they are and it is just a mother's nature to want to protect her children and thus worry what will be if we aren't around to watch them grow up.

I am certainly wishing and praying that your results are B9...if they aren't...it doesn't mean you won't be around to watch your kids grow.

While losing my Mom was hard, I moved forward and with time, healed from the loss.

Wishing you the best,

Liz

Deb,

You are asking the question that I couldn't bring myself to ask.  It is my worst fear as well.  I could give a rats ass what happens to me, but the knowledge my kids will be left without a mother is what keeps me tossing and turning at night.

God help us all,

Watson

Oh, Deb!

I am so sorry you are in a circumstance where these thoughts even enter your mind. I agree that the impact of our living with cancer--and possibly dying from it-- on our children is one of those things we mothers spend lots of time worrying about. Sometimes I wonder, though, if I am worrying more for me than for them.  

I think the best any of us can do is to speak openly with our children and seize opportunities to share ourselves with them. I have a "just in case" undercurrent to most of my thoughts since being dx'ed as stage IV right from the start. My kids are 11, 13, and 17. I am fortunate that they are old enough to converse with about many important issues. It is important for me that my children know who I am as a person, the sort of things I feel passionately about, and how I feel about them.

I also take the time to really--I mean REALLY--notice the good things about them and tell them so. I am already beginning to see the "fruits of my labor" as a mother in so many ways. I had a conversation with my oldest son this past weekend and told him the things about him that I am so very thankful for. I told him that he is growing into the man I hoped he would be--a good, caring, strong, and independent person. I told him that for me, it is very important that my children be kind and caring individuals and any achievements/success on top of that is just gravy. It was a wonderful conversation and very poignant. I know he truly heard what I was telling him. I am very blessed to have great communication with all my boys. I find myself telling them more of my thoughts--things that I am sure most mothers feel about their children but don't often say. The fact that I am telling them so many things now and will continue to do so as long as I have breath is something  that many children never have. So, in a way, they are being given an advantage because of my uncertain future.

None of us knows how many days we have left here on earth. Some of us have been given a "heads up" and understand our time will likely be up sooner than later. I am sure losing a parent before you are an adult is terribly difficult--losing a parent is always difficult. The best we can do is make our days count...make our words count...let our love show...and be as honest with them as possible. When the right time comes, I will be talking with some close female friends I trust and will ask them to keep an eye out for my boys. I have 3 brothers and 3 stepsisters, but do not know the stepsisters all that well because our parents married after we were adults. So, my girlfriends will be special aunts to my babies.

 ((((HUGS)))

Diane 

Ah, Deb.  More hugs coming your way.  No first hand advice, but I feel your fear and anxiety.  Your girls are so blessed to have such a warm, caring, and proud mama. 

A few months ago I watched a local high school championship football game on TV with my 13 year old son.  He'd been following the team all season and wanted me to watch with him.  The coach had lost his wife to the beast right before the season had started.  He thought that he was special and I knew my son felt a connection to him and his family.  He had three young daughters and team full of boys to coach when she passed as the season was beginning.  The community pulled together and supported him and the girls throught those grueling months.  The team dedicated the season to his wife.  Of course, they won and he and his three daughters were interviewed at the end of the game.  They looked happy and healthy.  I used this opportunity to teach my son that though they may never forget their mom, that life does go on and good things can happen and, yes it is okay to smile, laugh, and have good times.  Their mom would not want them wallowing in misery, she'd want them celebrating their lives.  Now, silently I wondered how they were going handle the quiet period after the busy football season.  I wondered if they even had time to mourn her death since it came as the season was revving up.  I wondered what was to come. 

Hugs to you,

lini

I didn't lose my mother, but a good friend of our family did. Susan was 16 when her Mom passed away, rather suddenly from bc.

She had strange circumstances because her folks were divorced and Dad wasn't real involved.  Susan ended up living with a friend of her Mom's, finished high school, went onto college and graduate school, and is happily married.

I think that there is never a void. Like the glass of water, when you removed the ice cube, where is the hole? Your husband, your family is there for you and your girls. They and will always be loved.

Since you are in the middle of a scare this would be a good time to make sure that all legalities are in place in the unlikely event they are needed. I think also to be sure you set your children's goals high. Your health should not restrict their dreams.  Talk to them and show them what you expect them to do with their lives so they'll know that you care and know they can be the very best they're able. 

Deb-

I have been thinking of you often during this recurrence scare- wishing you the best but totally relate to your need to prepare for the worst. I did not lose my mom but oddly when I did my psychology internship, four of my fellow interns had lost their moms to cancer when they were children or teens. All of them had taken the career path of becoming health psychologists. Certainly their losing their moms was an influence. They were very different from one another as individuals but as a group I think shared a stronger than usual awareness of suffering and a desire to improve the lives of people with serious illnesses.

Also, my daughter (29) lost her dad when she was in her early 20s. He'd been very ill (renal failure) since she was a young teen. It was devastating for her but she got through it. Like your daughters she is a wonderful person (I am biased but others would tell you the same), the best thing that ever happened to me. When I was diagnosed last year and really struggling with what that meant and the reality that I am at high risk of recurrence all I could think of was that I don't want to leave her. It was like a knife in my heart every time I looked at her.

I've gotten past this now but I am sure it would be right there again if I had a scare. With my son it's similar but not so intense, he hasn't had the loss that my daughter has been through. Even though they are adults I think they have grown in positive ways as a result of my breast cancer diagnosis. My daughter's experiences with her dad I think make her more able to face and talk about the possibility that I could die from this. She's one of the few people with whom I can talk about this kind of stuff. Ditto my husband, who lost his mom to lung cancer a few years before we met. I've talked very specifically with both  them about my fears of death but also what I would and wouldn't want should I become gravely ill. My daughter ended up being the one designated to make health care decisions at the end of her dad's life and based on what happened there I would trust her implicitly to make decisions for me. I designated her as my health care proxy along with my husband as part of a will I had drawn up prior to my dx. I realize that some of this does not pertain to you Deb, since your girls are young, but perhaps it will help someone else reading this. I find that hoping for the best but planning for the worst gives me a sense of control over the uncontrollable. I am very grateful to have people that I can share this with. It just doesn't work for me when people say, "Awww, you're so healthy, I can tell you're going to beat this." While I certainly hope this is the case I know that I am not quite on the same playing field I thought I was on a year ago and that the rules of this game are not very fair.

Know that I am thinking of you and wishing you the best. Thank you for bringing up this topic. I know my post is long- hopefully won't make people's eyes glaze over but did me good to write about this stuff. Allyson

It helped me to switch from what can I give to my kids, what do I need to teach them to focusing on what have they already learned. I feel confident that they can handle life and they have lots of support.



Try to keep the fear and worry in a corner and use your time to live and be with your kids.



Make a tape or write down some stories for them. Taking positive action always helps.



I made a little digital story for my kids (and me) to show what they have learned and what they have taught me.





None of us know the number of our days, even those with a serious prognosis. Try to enjoy your kids now. No one can really be prepared for loss, but good memories help.



take care,

--Hattie

Deb,

I don't have children and don't have any advice to add to the wonderful posts from the other ladies.  Just sending my thoughts and prayers your way for the best possible news to come your way.

hugs,

Deb- You speak to all of our fears as mothers.  My beloved cousin and best friend died in 1992- not of cancer, but left an only child at 10.  She is today a well adjusted 26 yo mother of one and expecting.

She gave the most profound eulogy for her grandmother this summer. She spoke of the strength of women and how she still feels her mother's love for her. She had some bad times mostly in her teens, but who does not?  Be well.

Oh Deb, it has been my greatest fear since I first heard those terrifying three words. I don't know what to tell you, quite frankly, I think Warren will be devastated, and I'm scared he will never be the same. He will be OK I think, but he certainly won't be the person he would have been if his mom didn't die when he was a kid. Just like he is not the same person he would have been had he not had to deal with his parent's divorce and his mom's cancer. But I hold onto the fact that he is OK.

One thing I have thought about, but haven't done yet, is to make sure my wishes about certain things are known. Warren's dad is re-married, and they have 2 other kids, so at least Warren will have a family, but I want him to have MY family. I want to make sure his Dad keeps him in touch with my sister and brother, and with my friends who are as close if not closer to me than family. I want to make sure his dad makes sure he gets counseling. His dad is not very sensitive, and would not do something like that on his own.  Just stuff like that.

I keep a journal for Warren, and I write him letters telling him what he has been up to, things I love about him, I write poems in it, song lyrics, whatever. I thought about buying him an angel for his room when I was first dx. I wanted him to have it while I was still here, so that he could always remember me by it. I never did it though. I do have a special song that I have told him reminds me of him and I. I told him that I want him to remember it, and to think of me and how much I love him, every time he hears it. He acts like I'm just being goofy, but I think there is a part of him that gets it. It's called, Such Great Heights, and the version I love is by Iron and Wine.

 I am thinking it's a sign
That the freckles in our eyes
Are mirror images and
When we kiss they're perfectly aligned

And I have to speculate
That God himself did make us into
Corresponding shapes like puzzles pieces
From the clay

True, it may seem like a stretch
But it's thoughts like this
That catch my troubled head
When you're away, when I am missing you to death

When you were out there on the road
For several weeks of shows
And when you scan the radio
I hope this song will guide you home

They will see us waving from such great heights
"Come down now," they'll say
But everything looks perfect from far away
"Come down now," but we'll stay

I've tried my best to leave
This all on your machine
But the persistent beat
Sounded thin upon listening

That frankly will not fly
You will hear the shrillest highs
And lowest lows with the windows down
When this is guiding you home

They will see us waving from such great heights
"Come down now," they'll say
But everything looks perfect from far away
"Come down now," but we'll say...

I know this is crazy morbid, but I have thought that I want them to play this song at my funeral (or whatever)

OK, so sitting here bawling now of course. And I so get it Deb, I know it's hard for people to hear me talk like this, but it is completely ridiculous to pretend like it isn't a possibility. I have great hope, but he's only 11 years old. I could care less about dying, but I can't bear the thought of leaving him unprotected. He is my heart.

Oh, I also have the ee cummings poem in his journal, I Carry Your Heart. I realize it was in some movie in the past few years, but that doesn't make it any less meaningful to me.

Thinking good thoughts for your Deb...

xo,

Colleen

My son's dad passed away when he was 3, so I was always worried that I'd die before my son was grown - no one was good enough to take my place as his only parent! 

He's an adult now, and I recently visited him (he's in another state).  He told me he had a dream that I came to see him....when he told me about the dream, he crossed his arms over his chest as if he was hugging me, and he had a look of pure happiness on his face.  It made me choke up, realizing that we have such a wonderful relationship.  I didn't have that with either of my parents, so I didn't even have the remotest idea that he felt that way about me!

But the best thing is that we've had time to talk - if I had died in an accident or because of a heart attack, whatever - we might never have had those great conversations.  I think all of us need to do that with our kids.  Make those memories, don't ever take a moment for granted.  Even if we all dance with NED the rest of our lives, we can't just be "regular" moms. 

Dx 5/11/2005, IDC, 2cm, Stage IIb, Grade 3, 2/21 nodes, ER-/PR-, HER2-

Deb,

Incredible post..You have reached into my soul and pulled out my greatest fear. My little ones were 4 and 15 when I was diagnosed 2 years ago.It is my prayer to God to please, through recurrence, pain, whatever may come , just let me see them into adulthood. I hope you do not mind my praying for you to have good news. I know your anguish well. Every time there is a pain, a new sensation a marker off I think , is this it? Is this the time the demon has come back to rear its ugly head. Is the battle now on again ? I respect and understand your fear. I get the same response from my sister and friends when I talk about the possibility that I may not make it, the do not be silly, you will be fines.They make me feel like I do not have faith because I must face the horrible truth, breast cancer has altered my children and my life forever.  I am wishing much strength for you and healing and only GOOD NEWS . Your sister in the struggle .

Benita      

Deb, that's terrific news so far.  I wish for your continued good health.

Benita, my dd was 4, like yours.  I am now coming up to her 7th birthday (in May) and my cancerversary will be in July. But you're right, we watch those markers like hawks, pay attention to aches, pains, headaches and WAIT for them to go away ...  2 years ago, I had pain in the sternum that lasted for over a month and they did a bone scan, NOTHING was there, must have been  strain from the mast and reconstruction, possible tissue that was bothered.

I just finalized my Living Trust last week so if the beer truck or whatever comes my way, I won't leave my dd in the lurch. Or my living relatives. 

I try and journal to my daughter, not every night, but often enough for her to know me, know how my life is and how it all revolves around her.  I need to make some movies of us together!