Did I fail?

There is a question deep in the back of my mind that occasionally comes up,  Did I fail?  Did I learn all I could about my sons cancer, did I go to the right people, did I go to enough people, should I have chosen a different doctor, should we have gone to St Judes?

I tend to beat myself up about this. After Julian relapsed I began researching again like a manic, I had researched all along, but this was a crazy level of research.

I discovered some articles and reports I had somehow missed when Julian was diagnosed, from a doc at St Judes. After reading them I was sick, testing medulloblastoma at dx for intenisty potential, severe cases go directly to stem cell replacement treatment.

Don’t know how I missed that, its huge. Might have changed our entire plan…

I have been told many times, you are an awesome dad, You did the best you could, It wouldn’t have made a difference,  etc

But i have never felt that way. I will always wonder why I didn’t know about that article, why the docs didn’t tell me, and if it would have made a difference

We chose not to go to St Judes in a moment of blind wisdom. We were afraid that if we went the family would have been split for too long, and if Julian didn’t “make it” it would be even tougher split apart.  Being all together through it was a blessing. So maybe regardless it was the right decision.

But I never asked God for guidance on this, just to make him well.

So did I fail? Some day the answer will be revealed to me, Until then I do live with deep regret.

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Why do marriages suffer? Part 1

Why do our marriages suffer so much when our child is diagnosed with a disease and dies?

It is a question that perplexes me.

I want to spend some time exploring this and look at some issues and hopefully gain some insight on why this is a common issue

When I look around at the cancer families I know, all seem to have some marriage issues. And many seem to have deep problems, lack of communication, loss of love and affection, isolation, emotional reliance on an outside person, addictions… gosh there are so many. And I am unsure how much marriage health plays into the depth of issues. Was the marriage strong before? I was pretty sure that if your marriage was strong before the child was diagnosed, it wasnt impacted so much. But I know a few families where this theory is proved useless.

And marriage isnt the only avenue of despair, many other aspects of life suffer and cause stress, family, sibling, financial, coping, marriage, depression… it is too much all at one time. I have become a bit intolerant of the continuous attacks on our families even after our children have died. it really seems to never end.

I know there is controversy over the stats but they paint a pretty grim picture. Tons of marriages dont last or the marriage is forever broken, with the spouses barely communicating.

I have seen some miracles and I have seen some really sad situations. And this is a very difficult topic.

One thing that happens is one or both spouses will begin conversations with a person outside the family that they feel safe communicating with. Often this is a fellow cancer parent who has endured the same pain, heartbreak, and suffering.

Other cancer parents offer us very special counseling that can go much further than even professional counseling I think. this is something that can be very healing and very emotional. We will instantly create a lifelong bond with some of these other people amd couples. Lifelong friendships are born very quickly and they can be very strong.

However, I have seen on a few occaisions a difficult scenario. One spouse, unable to confide in their own partner for whatever reason, will find a connection with another cancer parent, of the opposite gender. This can be dangerous, as we may find it much easier to talk to that person versus our own spouse when the pain is so raw. A deep connection can be formed, but it could spell for disaster for the two marriages if care is not taken. Sometimes the relationship becomes very strong and becomes more important to the grieving parents than their own marriage. I know for me there are some cancer moms I feel strong connections too, and I have tried to be careful to make sure I have as strong a bond with the dad too, otherwise i tend to shy away from that mom to be sure I never let that relationship get too strong.

The goal isnt to start a new life with different people, I think the goal should be to restart our existing life, although it will be very different than before.

But we really need those other cancer parents, those relationships can be very beneficial.

I think it might be much safer and more beneficial if we carefully choose another couple, and attempt to avoid such scenarios. Maybe we create a grieving parent rulebook and pass it around? chuckling

So this brings me to Cause number 1. I think maybe this is maybe the first item that comes to my mind when I think of how we get in trouble. I might change this though…

Forget previous marriage health, other life stresses and all that stuff for a bit, what hurts a marriage, lack of commitment and lack of communication.

The Cocoon

What I really wonder is why do spouses have trouble confiding in their partner? What is it that makes us unable to share our pain and suffering with our spouse Why do we feel greater comfort in another parent? an outside person?

Unfortunately I think there are so many variables that this is difficult to answer, and is a very unique to each individual, but there is one thing we all share, grief. Even if your child is still fighting, and ultimately kicks cancers butt! you may still face it. And part of grief is isolation. Locked inward, concentrating on yourself, attempting to understand, maybe attempting to survive. It is ok, and a natural process, a God created process, in which we cocoon ourself. The goal is make a transformation and come out beautiful, forever changed, but to come out having embraced some new changes to ourself.

There is a negative aspect of this cocoon however. There is a danger of not being able to break out of it. And while we are inside, our capacity to fulfill Gods role as a spouse is diminished. We are to always be thinking of our spouse, loving them. When we are so self-concentrated it is difficult to focus on that love. We may not even really be able to love at all. And during this time your spouse will feel this additional void in the heart, and I truely believe even if they are deep in isolation themself.

Isolation is a normal part of grief, but how much of that is isolation from our spouse? Is it possible to go through the isolation stage and still be what your spouse needs, even if it is a partial effort? I don’t really know if you guys have gone through this, maybe I am the only one… but it kind of seems like it is really difficult to navigate grief AND be a spouse. At least while you are inside the cocoon.

Is it that we are afraid to share because our marriage had prior issues?

Is it that confiding in our spouse will leave us vulnurable?

Is it that we do not want to add to their burden?

Is it that we are afraid to ever be so commited to another person again, fearing another loss?

Is it memories, and they are too much to bear?

Is it that our spouse’s grief makes no sense to us?

Is it that the diagnosis of cancer, and loss of a child has ruined our sense of order of life, our trust in life?

Is it that we feel we are ruined and cannot possible be what the other needs, that the burden is to great?

Or is it all of these?

Grief is packed with emotion, and what I am learning is that you can’t wait on emotion to break out of the cocoon. I don’t think it happens. Our emotions are invested in our child, and that isn’t something that can be easily resolved, if at all. I think you have to decide to break out, knowing that you are not going to be whole.

Sometimes you can break out just a little, for a short time. Maybe thats how successful couples do it, breaak out for short periods of time, long enough to offer things to their spouse, love, compassion, and then retreat.

 

Right now, my wife is on a retreat, a recharging time. Gone to visit a cancer parent couple who is very dear to us in Florida. Her time to cocoon, rebuild, recharge, redo, I hope break out… and it coincides with a period where i am learning a new love for her, a new very powerful commitment to her that I can’t explain in words. I am seeing what God wants me to be to her, and I am trying to do it. In the process this love began to flourish in my heart for her much like I just met her for the first time. But I am struggling with expressing that love, dealing with missing her greatly, and trying to remind myself not to be selfish, let her have her time. God I am REALLY struggling with it.

To all you cancer dads, lean on one another, find another cancer dad that you can team up with. We need each other, we understand each other, lets walk through the valley together. And if you are cocooned, break out a little each day to show God’s love to your spouse.

Posted in Grief | 2 Comments

Tonight I am thankful

Feels weird to be thankful when you are missing one of your babies, but I am thankful.

I am thankful my god is so big, and that he is filled with mercy and grace, and that he gives me these things. I am thankful he has shown me this path. He has done so much for me in the past two months, helped me change.

I am thankful for cancer parents, who are so filled with love and compassion for one another they will go to the end of the earth to help another…I am thankful for my cancer parent friends. They are a force, we cry, love, laugh together. people you never knew, yet the moment you meet them it is like they are your brothers and sisters. Without them there would be little consoling, little counseling.

Many have helped me.

I am thankful for my church. Filled with so many close friends, people who have kept me charged, looking the right way. They have supported us so well.

I am thankful for my close friends, they have constantly checked on me, loved me and helped me.

I am thankful for the Wyants. Zach is a rock of a man. What I aspire to be in a christian, a husband, a father, a provider, and a counsel to others. He has more than once looked me in the eye and said “Kenny, you need to get busy”   One man that can crritique me unconditionally, he does it with love, and good intentions. I love him.

I am thankful for my parents, they have been so hurt by Julians illness and death, and hurt watching my wife and I struggle so much in the past two years. My father has made such great steps himself recently. May god continue to lift them.

I am thankful for my boys. Julian is a warrior, I miss him dearly, this is a nightmare, but I am thankful I am his daddy. I am thankful for william because he makes us laugh, I am thankful for Alex because he has a caring and loving heart, and Sam, because he shows us the future, strength, humbleness and silliness.

I am thankful for my wife…

Mimi has had such a rough time, yet she still consoles other moms, she loves them, takes care of them, fights alongside of them, cries with them…

She is becoming a nurse, I am so proud of what she has done at school, and watching her take care of a mom and kids that had just had a car crash (very minor) I see what a great caregiver she will be. Thank you god for giving me a woman like this.

She gave me four great boys, did the dishes, the laundry, cleaned the house, ran the school bus, ran the house, paid the bills, and worked. How great is she. and she loved me, and was patient with me even when I was selfish. How great is she.

Did you know she can eat a sandwich and hold a puke bucket, and keep eating? wow. She took care of Julian, loved him, held him, prayed for him.

I am so thankful for the woman you gave me.

I am thankful for tonight, I have worked hard and see better ways to cope, see I can be a better husband, a better dad, a better provider. And I can console dads.

I was able to take care of my wife when she was sick, I loved being able to do that. I am thankful. I am thankful my wife and I are starting to talk openly about Julian, our marriage, our struggles, our boys.

I am thankful.

Posted in Grief, lessons | 3 Comments

quick note tonight

So I guess the mom post was ok. it would be cool if u guys put up you comments here, thank you all for what you said. but I am aspiring to what I wrote, I am not there yet

the blog helps me get therethank you stephanie for giving me the topic

thank you mimi for being my wife and my boys momma

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Moms

So tonight I was thinking of writing about us guys, and how we NEED to fix things. we are compelled. But I changed my mind, I am going t write about moms. gonna get in trouble, but thats ok.

Thank you to one of the special moms out there who kinda gave me the topic. 

Sometimes I don’t know if us guys really understand what the moms go through. I know we go through ALOT ourselves, but I dont get the pain my wife feels. I dont know if we are capable of feeling it.

I know it kills us guys, destroys us, cuts us down, leaves us immobilized. But I havnt really stopped too much and put myself in her shoes.

what does she feel? This is hard for me to know because I was an outsider to the miracle in her body when sam and alex and julian and william, and another, began to grow. I could only be excited knowing I was going to be a daddy, and when the babies were old enough I could feel them move. that was so amazing. but how was it to her. She was connected to them and they shared a space, and blood, and life. I didnt get to experience that feeling. So how can I even begin to understand how much it hurts a mom to loose a part of herself? I can’t, its plain and simple truth.

But I can try? It must be like someone has cut off her limb, or head or heart, dug it out and threw it away. It must be like someone ripped her apart and spat on the wound, maybe its like your insides dissappearing and you just crumple to the ground. God, help me understand

my wife was excited to be I mom, she loved being pregnant, called her a pregnant potato. I loved how she looked, and the glow she had. It was like an angels glow! She wore herself out taking care of the babies, before and after they were born. She invested all of her heart and energy into them, I think she gave them everything she had in her.

She is an amazing mommy.

I was so afraid that day I had to call her and tell her Julian had a tumor. God picked me to be there when we got the news, I dont know why, maybe because he knew that was too much for her? or maybe because her job started after that. to love him with all her might, and give him even more love than she had available. but scared and dazed she did what she had to do.

I think she used it all up, for a while. but I still dont know how much she hurts. I wish I could take some of it from her so she feels better, but if I dont have that same bond how can I really understand her pain enough to hold some of it?

I wish when she was hurting so bad that I could hold her and make her feel better, but I realize I cant. really she needs a mommy to hold her… another mommy is the only one who can hold the pain maybe.

And I guess thats why these cancer moms cling to each other so desperately. they know exactly how wounded she is, crying in the bathroom. hiding from us dads that just cant really grasp the depth of it.

I dont think it is our faults. we are supposed to kill the beast and cook it, they are supposed to love and nurture the babies, feed them tfrom their breast till they are weak and tired. we just get splashed in the face and told to go change a diaper at 4am because their tired body just really cant move another inch. lol, and we grumble….

I have seen some very heartbroken mommies at funerals and other places. Mimi who seem to quite be there at the service, Peggy who looked very very tired, Alicia who looked like she couldnt stand up anymore, Shelly, and others… and to see them so broken hurts my heart, but I cant even grasp what they feel. We are dads. all we can do is be there to make sure there are tissues in the bathroom for them, the water bill is paid so they can run the shower while they cry so I can’t hear her, make sure when she comes out there might be a meal on the table, make sure when she can comedownstairs the house has a non-burdensome atmospere, and make sure I am giving the space she needs to work it out.

My hands are tied god, but I can do what you ask of me for her, and do it with love.

 

 When you wonder the meaning of life and love
Know that I am with you.

Close your eyes and feel me kissing you
In the gentle breeze across your cheek.

When you begin to doubt
that you shall ever see me again,
Quiet your mind and hear me.
I am in the whisper of the heavens
Speaking of your love.

When you lose your idenity,
When you question who you are,
and where you are going,
Open your heart and see me.

I am the twinkle in the stars
smiling down upon you,
Lighting the path for your journey.

When you awaken each morning
not remembering your dreams,
But feeling content and serene
Know that I am with you
Filling your nights with thoughts of me.

When you linger in the remnant pain,
Wholeness seeming so unfamiliar,
Think of me.

Know that I am with you
Touching you through shared tears
of a gentle friend
Easing the pain .

As the sunrise illuminates the desert sky
In that breathtaking brilliance,
awaken your spirit.

Think of our time together,
all too brief, but ever brilliant.

When you are certain of us together,
When you are certain of your destiny,
Know that God created that moment
in time, just for us.

I am with you always.

(c) 1997 by Joanne Cacciatore,

I know when I stop I hurt, and it hurts very bad when I think of julian. But hers is way beyond that. she lost a literal part of herself. I will try to love you, protect you encourage you as much as I am allowed to do. I am learning the wisdom bit by bit of when I cant do more

I pray for more wisdom, and I pray for her.

 

 

 

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3/4 Fathers Day

Is this to be my future, God? To forever from now have 3/4 Fathers Day? Must I always endure pain to celebrate this day? I wish to be whole again, to celebrate it fully, but you have one of mine, you are his father and must embrace him and hold him while I am not able… 

I cannot hold him and comfort him, I can hug my other boys especially today! But he can’t feel my hug.

I know there are some special daddies up there that are helping me today, telling him its ok, my grandpas Papa and Granddaddy, and Mimis grandpas too, and my sweet greatgrandfather Samuel, he went to heaven when I was Julians age, he must love seeing you Sam. I know papa takes him fishing, and grandaddy plays ball with him and makes great cornbread.

And this comforts me God, but it doesn’t fill that 1/4 of my heart. Your love is infinite, and I know it should fill the void, but it is still there. And in a way God, I don’t want you to fill it with anything but Julian.

Please give me the peace today to give all my love to my four boys, here and up there, to celebrate fathers day doing what a father should.

And give me the courage to face my father with gratitude and make me gentle. He hs a son who hurts, and he does not know how to heal it, and can not heal it.

Fathers Day ….. to all you daddies fathering angels, my love to you,  God give them courage and peace today to face this special day, and the wisdom to see the needs of their other kids today. Bless them all, and hold up the dads still fighting, whose children are still here.

You have given us cancer dads a really tough job, and it crumbles us, help keep us built up, and let us be able to cry when we need to, love when we need to, and fight when we need to.

Help us understand and accept or wives pain, fears and grief, and give us the wisdom to know how we can be their comfort, their fortress.

Keep all the evils of the world from us while we do this, and provide us with financial peace so it is not another burden.

Most of all heal our sick babies, and love those who you now protect in your home, until we see them again.

You humble me everyday, and I am thankful, Amen

Posted in Grief | 3 Comments

Fathering an angel

A few days ago, Jeri Hentzen Geary commented on mimi’s facebook “fathering an angel, and it got me reflecting on that, what that means.

and it is packed with responsibility, pain, suffering, anguish, loneliness, defeat……. joy

Parenting, specifically Fathering an angel is tough business. Your child can see you, see what you are doing, what you are thinking, but you cant see them. We are used to having our young kids close by so we can protect them, love them, disciplin them.  We are completely unfulfilled in these things when they leave us. But our responsibility doesnt deminish to them. We still have to raise them in a sense, from afar.

Since he can see me and and probably is concerned for us, I have to do the right things. I have to take care of his family, to save it so it doesnt die too. Letting it fade away would be throwing trash on hs memory and his tragedy. It would be like tossing away his brief life and making it where it just really never happened. For those reasons I find myself fighting to save a family; mine, help the kids, help the marriage.

And all of these things will honor his memory. To end up at the end of my life knowing I did more than my best, and I helped his family survive here on Earth, would let me see him again when i get up there, with no shame or regret. I think thats the goal, or one of them.

Also, another heavy responsibility is to be sure there are no other cancer angels after him. Make sure no more kids get cancer. This is the part where you are called to a mission fighting childhood cancer. Through advocacy or fundraising or support of other families, many of us feel the call to serve. We start foundations and continue the fight. I think we have to be careful not to let it become the sole focus though, it must become part of our focus, mixed in with surviving children and spouses.

I see that the entire family dynamic changes when you become the father of an angel. No matter what, your family becomes totally different. It is off balance, missing an important part, and as the father, you must find a way to recalibrate the family. Also, I think mom and dad change. They become different people. I see in my wife and I completely new personalities and life goals. My wife is not the same person I married. nothing bad about that at all. and I know I am not the same. To honor him we must find a way to love the new person, and grow in these new roles. 

Our other children also become different. In my boys I see young men who before their teen years have already faced one of the worst scenarios in life, I doubt much could bother them now in life, after being through this. Their childhood innocence has been stolen too. They look at the world through much older eyes. A big responsibility of fathering an angel is to try and bring back childhood innocence to the siblings.  Ha! find a guide for that one!

 

Although they mean well, one of the craziest things you hear people say (although they are right) is “well he is in a better place”

Dont say this to a parent who has just lost their child. That is a realization each parent must acheive and can’t come till much later in the grief process.  It actually hurt a bit when people would say this no matter their level of empathy. We know they are but we are selfish beings and want our child with us. I guess another part of fathering an angel is learning to allow them to be in that better place.  In this task I think of the parents in war zones that send their children away, knowing they will be safer. How hard that must be. We didnt have the choice, but we must release them to a certain extent.  Trust me, this is no small task. It is not to be taken lightly, and I am definately not there at all.

Fathering an angel isnt just a simple terminology Jeri threw out there to explain a thought, “Fathering an Angel’ is a major job, like “being a parent” or “being a spouse”          It is a full way of life, packed with meaning, emotion, responsibility, tasks to do, and a mindset.

I don’t like the job, want it, nor did I ask for it. But it is a job God has placed on me. I must do it well because he is watching. God Jesus and Julian. Every action I do should be done with reflection about that simple fact.

One last thought, “fathering an angel” does come with sadness, and a void, there are things that have been taken from me. I have four boys, one of them I will not get to share some earthly experiences with.

Julian, I know you can see me, and I miss you, and I will miss the things that were supposed to happen.

I didnt get to see your 5th birthday, I wonder how you celebrated it, do they have cakes in heaven?

You should be going to 2nd grade now, I never got to meet your kindergarten teacher, take you to your first day of school, take your training wheels off your bike…

I couldn’t take you to cub scouts, and we miss you when we are camping. And it would have been fun to see you play soccer or t-ball, I wonder how you would have done…

I will never get to see you play in band and go to middle school, get that first tween girlfriend, or tryout for football…

And I will never be able to give you a ride in the camaro, or get you your first car.  High school is a big thing, but there will be no prom or homecoming, or graduation. No choice of college.

Four brothers getting married, having kids, enjoying adulthood, there will always be one missing.

The fishing trips we could have done, you coming to me to help solve lifes issues, any of that, there is a void.

SO much life that is now gone, but I know eternity will be a gift for us, you will not be tarnished by the bad things of an earthly life. But the good things here we will not get to share,and that hurts.

Julian, I miss you, and will miss you many more times, till I see you again.

our song Watching you by Rodney Atkins, makes me cry whenever i hear it

Drivin’ through town just my boy and me
With a Happy Meal in his booster seat
Knowin’ that he couldn’t have the toy ‘til his nuggets were gone.
A green traffic light turned straight to red
I hit my brakes and mumbled under my breath.
His fries went a flyin’, and his orange drink covered his lap
Well, then my four year old said a four letter word
It started with “S” and I was concerned
So I said, “Son, now where’d you learn to talk like that?”

Chorus:
He said, “I’ve been watching you, dad ain’t that cool?
I’m your buckaroo, I wanna be like you.
And eat all my food and grow as tall as you are.
We got cowboy boots and camo pants
Yeah, we’re just alike, hey, ain’t we dad?
I want to do everything you do.
So I’ve been watching you.”

We got back home and I went to the barn
I bowed my head and I prayed real hard
Said, “Lord, please help me help my stupid self.”
Just this side of bedtime later that night
Turnin’ on my son’s Scooby-Doo nightlight.
He crawled out of bed and he got down on his knees.
He closed his little eyes, folded his little hands
Spoke to God like he was talkin’ to a friend.
And I said, “Son, now where’d you learn to pray like that?”

Chorus:
He said, “I’ve been watching you, dad ain’t that cool?
I’m your buckaroo, I want to be like you.
And eat all my food and grow as tall as you are.
We like fixin’ things and holding momma’s hand
Yeah, we’re just alike, hey, ain’t we dad?
I want to do everything you do; so I’ve been watching you”

With tears in my eyes I wrapped him in a hug.
Said, “My little bear is growin’ up.”
And he said, “But when I’m big I’ll still know what to do.”

“‘Cause I’ve been watching you, dad ain’t that cool?
I’m your buckaroo, I want to be like you.
And eat all my food and grow as tall as you are.
By then I’ll be strong as superman
We’ll be just alike, hey, won’t we dad
When I can do everything you do.
‘cause I’ve been watchin’ you.”
hey yeah
uh huh

I guess you are still watching me

 

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