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What The Hell Happened?

cancer love storyWe met when we were twelve. My wife Kimmy was always healthy. She never smoked, only occasionally drank, she exercised and ate all the right foods. She hadn’t seen a doctor in six years, always joking, “I’m waiting for the big one!”

She went in for gall bladder surgery on 10/19/10. I assured her she’d be fine. My wife passed away fifty-five blurry days later on 12/13/2010.

When I realized how sick Kimmy really was, I told her, “Dammit Kimmy, why couldn’t you be a mean, bitchy woman? Then I could be rejoicing right now!” But she couldn’t be mean or bitchy. Not her nature. She was so sweet, so positive, right up until she died in my arms.

miss her so much. I was a train wreck that she’d lovingly pulled out of the gutter, cleaned up, and helped exercise my demons. She made me what I am today.

And now, in my new, traumatic, bizarro world, I can no longer keep track of time or what day it is. I walk around feeling stoned. I question; I second guess myself. Did I kill Kimmy? I go back and forth, replaying this in my head.

St. Patrick’s Day last year, we lost our ten-year old Lab/Aussie pup, Zona. That dog was part of the family. Our kids adored her as much as she loved them. That dog allowed them to ride her, use her as a pillow; anything the kids wanted. We took her to the vet. She had to be put down. My children were inconsolable. Kim and I looked at each other and she said, “you go, you held Cajun while she passed on. I’ll stay with Zona.” An autopsy revealed wide-spread cancer. My stoic Zona never let on.

Now, looking back I wonder, did Zona’s cancer (in some crazy way) pass to Kimmy? What if I had stayed in that room?

———–

I regret that I was so uptight about money and our financial situation. Kimmy would say, “I’d love to go to the beach.” I’d show her our bills, explaining that, “It’s not a good time.” Kimmy wanted a beach cruiser, and I’d nod, knowing we didn’t have the money. Kimmy wanted to replace the broken stereo in her car, and I explained that we could not afford that either.

Not right now.

When she died, the community helped with bills and groceries and medical expenses. Now we can go to the beach, only Kimmy’s not here to go with us. Dammit, I feel responsible for being so focused on money problems. I should have just taken her to the beach.

————-

While Kimmy was so sick, I did everything I could to help: showers, dressing her, feeding her, doing the cleaning, even giving her a Lovenox injection twice a day; to combat the blood clotting issues caused by the demon cancer. She called me her knight in shining armor. She told me that I was saving her. But I wasn’t, I couldn’t; I wanted to believe I could.

I wonder, did the Lovenox help? Or was I making it worse?

I don’t know.

I do know that Kimmy was an incredible wife, mother and friend; the type of person you wanted to be around. Positive, upbeat, energetic. She was an excellent cook, such a nurturing mother – and I can’t help but think of how sad, how tragic this is for them. Cody 13, Autumn 10 and Antonio, especially Antonio, 7; all motherless.

What the hell happened?

Now, our family is closer than ever, although it’s out of necessity. Our glue, our mentor, the love of my life, the mother of my children, our motivator is gone – ripped from our lives so quickly – but we try to remember her positivity. We comfort each other because we know she believed she was going to Heaven. I tell the kids, “we need to smile and remember the wonderful times.” These little ones have responded so beautifully and remarkably, standing up for each other, and for me. They try to keep our morale up and her memory alive.

In the dark of night when I cannot sleep, I replay the whole nightmare, over and over:

What could I have done differently? I should have seen that she was sick. I should have. I could have…why didn’t I?

And, I cannot shake this feeling. I was not Kimmy’s knight…I did not ride off into the sunset. I did not save the girl.

I’m the bad guy.

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Ask the Band: Grieving After Abuse

Dear The Band,

I was sexually abused as a child from age 5 to 8 by my babysitter’s son who was 10 yrs older than me.

I didn’t tell anyone until I was 10 and blocked the bulk of it out until college.

I just found out that the babysitter passed away earlier this week.

I don’t feel anything about her passing

I am sorry for her daughter and all of her grandkids. But there’s really nothing there.

Am I wrong for feeling like this?

Missing The Tin Man

At the end of last month, I wrote an entry about one of my little brothers and I wanted to share it here with other Pranksters. Normally this is not the type of stuff I share, so getting it down was pretty difficult. I knew if I didn’t do it, it would eat at me until I did. So here it is…

I was at a loss for words, which rarely happens, so I got my son (The Boy) ready for an outing. Which means I handed The Boy off, informing my husband (Gadget Guy) that he needed to take a break, so I didn’t go outside smelling like a gym shoe.

Given the promptness of Gadget Guy’s willingness, I must have smelled pretty bad.

Once I got cleaned up, changed a massive poopy diaper, and got in the car, I decided to go to the mall. I had to take my wedding rings to get cleaned and decided that walking the mall would be as thought-provoking as anything else. Plus, it’s still reaching the low 100′s here in the afternoon, so outside was not an option.

Normally, the mall provides lots of things for me think about: obnoxious teens, people who touch my child without asking, panic attacks in the elevator, using the family bathroom, and the list could go on.

However, this is what caught my attention:

It’s an ornament. I found it in Hallmark.

And this little thing was enough to make me start crying. I was bawling like a baby in the middle of the Hallmark store. My son, who is a 5-month old baby, looked at me like I was a crazy person and the Hallmark lady asked if I was okay.

I muttered something about stubbing my toe, picked up the ornament and paid for it. Then, I high-tailed it out of the mall, as to not make a bigger spectacle of myself. I’m sure you’re wondering how this tiny replica of a 1939 musical fantasy character made me break down like I did.

Sit tight, because I may not make a whole lot of sense here, as I’m already getting teary-eyed at the thought.

I’m the oldest of four children. I have/had two brothers and a sister. I say “had” because one of them died.

Little Brother #1 wasn’t even the one we thought we would lose, but Little Brother #2′s story will have to be shared another day.

Little Brother #1 was a little over two years younger than I was. We grew up together and were bestest friends until we hit puberty. Then we fought, argued and generally didn’t get along. All fairly normal sibling rivalry.

When I went off to college, things between the two of us improved. We appreciated each other a bit more and decided we just needed to agree to disagree and move on.

For the most part, this worked.

Little Brother #2 did things in his own time and in his own way. He had severe ADHD and at 14, decided not to take medication to treat it anymore. He graduated a year later from high school, didn’t go to college, and was (medically) discharged from the Navy. He bounced from one job to another. We were complete opposites in most of those regards, and I had a hard time relating to him.

And he always had a difficult time in social situations which was particularly hard on him. He was a friend to a lot of people, but didn’t have a lot of friends. He was easily taken advantage of. I didn’t understand why he would give so much of himself to other people when they didn’t give him the same in return.

He did excel in dramatics. He was one of the youngest students ever to be inducted to the Thespians Cub when he was in high school. He wasn’t cast often, but tried out for every play and he became the go-to guy for backstage production, lighting, and set design.

People referred to him as Tin Man. I’m not sure where the nickname came from, but he wore it proudly. He had it put on his Letterman jacket instead of his name. It was on his track jersey, the back of his drama t-shirts, and even on his class ring.

In the beginning of 2007, he died.

He was 21.

He was in a car accident, but it wasn’t drugs or alcohol, thankfully. He fell asleep at the wheel and rolled his car.

If there was anything fortunate about his death, it was that no one else was involved, and the freeway was completely empty when it happened. He was pronounced Dead On Arrival. The Medical Examiner said that it would have been quick and that he hadn’t suffered. I HAVE to believe that. I can’t believe that he sat in pain, I just can’t.

My parents didn’t handle it well. I stepped up to take control of things where they couldn’t. Gadget Guy was a live saver and helped support me while I tried to support them.

Little Brother #2′s funeral was epic. There were almost 400 people in attendance. It was amazing to see the sheer number of people crammed into the small chapel as I gave his eulogy. And after the burial we had a huge party in his honor.

In the end, all those people that my brother was a friend to came to say goodbye.

To honor his memory, and celebrate the one thing he loved the most, my parents had “Tin Man” engraved under his name on his headstone.

Now, I can’t watch the Wizard of Oz without crying. I can’t even look at an image of the tin man without choking up.

That is why I was bawling in the middle of the Hallmark. I didn’t even keep the ornament.

Instead, I gave it to my mom.

Spotlight On Child Loss: Falling Apart

Child Loss

Every year, 10,000 children pass away.

This is her story.

 

My world is falling apart.

My just-turned-six year old is dying.

His brain stem is deteriorating, a side effect of the chromosome abnormality he has. Twenty-nine surgeries haven’t been enough to save him, though they have bought him more time with us.

We are told that he’s the only child in the world who has his conglomeration of medical conditions (the chromosome abnormality, spina bifida, a connective tissue disorder, chiari malformation, intracranial hypertension, and another half-dozen minor diagnoses).

The amount of pain medication he receives every day is a drug-addict’s dream, is administered around the clock to keep him from experiencing pain. It is so beyond awful that I don’t have words to express my feelings. Watching him decline is the worst thing I’ve ever experienced in my life and that is saying something.

As if that isn’t enough, the two children my family adopted from Ukraine eighteen months ago have a lot more “going on” than we were told about.

My two-and-a-half-year old has Down syndrome, autism, and reactive attachment disorder. She functions at the level of a ten month old.

My four-and-a-half year old has Down syndrome, a heart defect that wasn’t repaired properly, systemic juvenile idiopathic arthritis, atlanto-axial instability, autism, tethered cord, syringomyelia, mild hearing loss, and is considered both medically complex and medically fragile.

We’ve been told repeatedly by numerous specialists, that she isn’t going to have a long life. She functions at the level of an eight month old.

Neither of the girls walks, talks, signs, eats (they’re g-tube dependent, just like my six-year old) or interacts well with people (they interact, but only on their terms).

When we adopted the girls, we knew they had Down syndrome and that the four-year old had a heart defect.

Everything else has been a big ‘ol surprise since we brought them home. Honestly, it feels like discovering new problems with our kids never ends.

We didn’t know our son had this chromosome abnormality and would die soon. If I’d known this, I wouldn’t have adopted him, or at least not when I did.

To top it all off, my marriage is falling apart.  I know I should care, but I don’t have the emotional capacity to handle it. I just want him to leave me alone. I don’t want to have to deal with him on top of everything else.

I’m struggling.

I’m struggling in every sense of the word. I don’t know anyone that understand how this feels.

Yes, lots of people have lost a child to death.

Yes, lots of people have a medically-fragile child.

Yes, lots of people have large families.

Yes, lots of people have multiple children with special needs.

But I don’t know any other people who have a large family with lots of kids with special needs, some who are medically fragile, with one who is terminally ill?

If there are, would someone please point me toward those people?  I REALLY could use a friend, someone who’ll say, “This totally sucks!” along with me. I know people don’t know what to say to someone like me, but I still want them to say something – the silence is deafening.

This road I’m on is lonely.

I just want to feel like I’m not on it all by myself.

what can you say when a baby dies?

what can you say when a baby dies?

ive been wanting to post for a long time about what to say when someone loses a child. some days i feel like i really didn’t lose a child so much as i lost the possibility of one, or two, as it were. when my mother remarked that i didn’t really have them, i knew what she meant, and i agreed, after i recovered from the initial sting of her candor.

what to say when baby dies

i didn’t after all. my dear ayla, the one whose bag of life was so grievously compromised, never showed us any signs of spirit after she was born. she was on the shuttle already as we nuzzled her warm body.

sweet juliet was pink, opened up her little mouth, stretched her limbs. morphine i cried out, “T! cut her cord!” so desperate was i to believe the deceit of her movements. silly people, my daughter is fine!

run along now. ah but reality resurfaced all too soon. the amazing wonderful caring loving angel at my bedside nurse worked swiftly to baptize her and deliver her to our arms.

this is where is gets hazy for me.

i know T held his sweet girl as she went on to join her sister. he says she made a face that looked just like her mama right before she drifted off.

i slept in and out of consciousness for hours, waking only to deliver the placentas and fill the space-age barf bags i was provided. when i finally half-shook my stupor, my mom helped me shower and put on a stretchy netted undie.

the doctor came in and told me i could leave whenever i wanted or i was welcome to stay. i gave him a ‘watchu talkin bout willis?’ kind of look. i was in no shape to leave and after awhile i was moved out of the birthing suite into a regular room.

T showed me the text he had sent out to our friends and families:

 ‘this morning at exactly 20 weeks we delivered Ayla Joy and Juliet Grace. we held them in our arms, baptized them, and kissed them goodbye.’

i never would have thought to send a text and i forwarded it, in disbelief, to many. one went out as an answer to a ex co-worker who had not 5 minutes earlier asked how everything was going: not good. its not good.

the condolences started rolling in. well, mostly condolences. T got a few ‘congratulations!’ back, from people who had just scanned the text. that’ll teach em to cut corners. this is where it gets tricky.

i in no way want to sound ungrateful for people’s sympathy. any words of consolation or comfort were of course appreciated, and the commonplace ‘im sorry’ and ‘you’re in my prayers’ were lovely to hear. though

T wondered aloud exactly when all of his friends had started praying.

its just that the words that meant the most to us were unique. one friend wrote ‘you gave them such beautiful names’, another, ‘your little girls are angels now, they will always be with you and i will never forget them.’ after he and his wife could gather themselves enough to be able to call me; my cousin, a dad of two boys, cried with me. he said ‘i wish i could have met them’.

so what can you say when a baby dies?

certainly nothing that anyone said took the pain away, but having the girls acknowledged was something that meant a lot to both T and me.

when an older person dies, you don’t just say you’re sorry, you usually elaborate about the person and what you loved about them. that’s what we especially appreciated about these few comments. people were not just pitying us, feeling sorry for what we went through, they were remembering our girls to us and acknowledging that even though we didn’t really get to have them, lord, they were here.

Remembering The Band’s Babies: The Ache

When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.

It is through our stories that they live forever. These children were here and they mattered. They were loved.

They are loved.

My therapist told me that I hide behind walls of humor.

And I do.

I laugh so I don’t cry. And I have been doing a LOT of laughing lately.

But I have been doing as much crying, just behind closed doors. I have been going through all the stages of grief and grieving in like a minute every single day. It’s wearing me down.

I miss the baby I lost so much that I ache.

I thought Christmas – her due date – and what would have been her first birthday would have been harder.

remembering the bands babies

I’m okay in public and with those who she’s disappeared to. I can pretend everything is okay; that I am fine.

I’m not fine.

But today. This date which means nothing to me is harder than her day. Tuesdays and the 28th of every month are torture because she was taken Tuesday, July 28th. But today?

Why am I aching for her today, a day that means nothing? Why do I miss her so much that I can barely breathe?

She would be a year old.

What would she look like?

Would she look anything like her sisters?

Would she look like her daddy or me?

Would she be walking?

Would she be talking?

Would she cuddle me when I needed her?

It’s such a punch in the gut, living without her. Having these thoughts. And seeing her and her “birth” (which wasn’t a birth to anyone but those who really loved her) every time I close my eyes.

My therapist wants to talk about it; deal with it.

If I talk about her and heal, will what few memories I have fade?

I don’t know that I can relive that night out loud. I see it over and over in my head. I wrote about it here. But I can’t say out loud. I can talk to my husband and mother because they were there, they know. But even my husband doesn’t grieve with me. He has almost moved on. I don’t think I ever will. I held her in my hands. And always in my heart.

Everyone grieves differently and he just wants me to be better.

How do I get better?

Why on a day when I should be semi-okay does the grief come out of nowhere and take me to my knees? The pain. The anguish. I feel like I am drowning.

All I want is to hold my little girl in my arms. To rock her and smell her sweet smell. I never got to smell her sweet smell. It’s not fair.

I want to punch walls and throw things and scream at the top of my voice, “it’s not fucking fair!”

This aching, this longing for something that can never be. That is the hardest. I miss my daughter. I can’t breathe without her today.

Maybe tomorrow will be better but today it’s not going to be okay.

Today, I want to fall apart.

Today, I feel like I am dying.

You are invited to add your child’s name to our wall of remembrance.