Why didn't the doctors help?????

This is a question my son repeatedly asks me.

Doctors can fix anything EXCEPT MY DADDY!!!

Approximately half a million people will die from cancer in 2012 in the United States.  My husband - the father of my babies is now part of that statistic.  I originally wrote half a billion and had a friend correct me on my faux paus "B".  It's all the same to me.  Might as well be a Gabillion!

How is it possible in the "New Millennium", that my husband is diagnosed with cancer on February 17, 2011 and is dead by January 21, 2012?  

Some of my sons questions:

• "Why didn't you take Dad to a different doctor?  Like one in Kansas or something?" 

                Answer:  "We took Daddy to every doctor we could who knew anything about   

                                   Daddy's cancer.

• "Why wasn't their medicine for Dad's cancer?"  This is a harder question to answer.

                Answer:  "They haven't developed a cure for many different cancers."

• "Why haven't they."                                                                                                          

               Answer:  "I don't know why."

• "Then you didn't do all you could to help Dad."  

               Answer: "I promise you we did."

I feel that as well.  Why wasn't their something that could be done?  I remember in August, 2011 the doctor told me alone that, "We are going to try to get Eric to his birthday."  "His birthday is in January," I said.  "What about my children's birthday and my birthday.  "We'll try Alyce.  That's the best we can do."

The system or something failed my family.  An otherwise perfectly healthy man died of cancer.  Up until the day before he died his blood pressure was 112/60 - no temperature - he could speak - and he could hug and kiss us.  And just like the doctor predicted - it would be like falling off a cliff.  My husband actually died of cancer.  Not pneumonia, not organ failure, but cancer.  It invaded his body and took over.  There was no "fight" against this cancer.  It was a slaughter.  My husband didn't stand a chance.  With that said, he took different medicines that were part of trials and both failed.  THE SYSTEM FAILED.

The most "sophisticated" healthcare system in the world.

"Are you going to get sick and die Mommy?"  "Of course I won't honey."  My son paused and then said, "But Daddy did, how do you know?"  His face got all crumpled up looking and then just sad and scared looking.  I realized I was making a promise I knew I couldn't keep.  What if I got some sickness that had "NO CURE?"  

I now need to live my life more carefully.  It's important that I stay alive.  I guess it's always important to not die early, but now it's really important.  My children would then be orphans.   That's a fairly weighty responsibility.  I'm not one who chases danger but sometimes accidents happen.  Well, my children can't afford a freak accident to happen to me.  

Dear Children,

• I promise to take the best care of myself that I can.  
• I promise to push my doctors to test me for random stuff that NEVER happens until it happens to the daddy of your children.
• I promise to envelope you with the love of two people even though I am only one.
• I promise to keep you on a path to a new normal - that will still seem like the old normal.  Full of love, laughter, and a feeling of security.
• I promise we will talk about and to daddy all of the time.
• I promise to love you with all that I have and then some.

Lastly, I promise to allow you to say "I hate fucking cancer" at will.  It's the least I can do after it killed your Daddy.

My first outing since acquiring my new life.

This is where I decided to go.  Back
"home" to the place I escape to.

My order is much too complicated to put on one cup.  Thankfully I've spent enough money that I say nothing and they make exactly what I need.

I kind of feel like everybody is looking at me and thinking "poor her" as if someone tattoo'd WIDOW on my forehead.  Or perhaps they're just looking at me because I've chosen to use one seat for myself and the other for my computer bag to assure nobody would be able to sit next to me.

Surprisingly similar to my engagement ring.

So, I sit here and contemplate different things, like my wedding ring.   I am obviously no longer married.  Not by choice but by some vile and disgusting disease that took my husband from me.  So, throwing the ring over the railing at a bridge wouldn't be an option.  Selling it is not an option either.  Keeping it for one of my daughters is an option - but which one?

The question really is - how long do I wear this ring?  Is there an appropriate amount of time before I put away the ring I received from my husband when he asked me to marry me.  The same ring I've worn for 10 years.

I know I know what you're gonna say.  You'll know when it's the right time.   Nah, I don't think so.  It'll be something I google to see what's mostly done and then I'll make my decision.

Tomorrow I start posting on my FB wall again.

For those of you who don't know, I have an Alyce IsCurious regular page, Fan Page, and Group.  In the works is an Alyce IsCurious.com website.  It's been under development for what seems like forever.  I have a website designer who is fabulous and we're in the final stages before releasing it.  The website will incorporate all of the things that I love and people seem to enjoy.  Political banter, entertainment gossip, The Comfort Quilt, My Vlog, My Blog, and all of the back and forth we've grown to love together.  Without the constraints of you know who and what.

This is a date

My daughter asked if I was going to date.  AM I GOING TO DATE?  Hmmmm....Am I going to date.  My mom dates and my daughter helps her pick the "cute" guys on the dating sites.  I think that's more what's she interested in than her Mom actually going out on a date with a man.


But let's play Back To The Future for a second.


Newly widowed woman with three beautiful children.  Twins that are 9 and a baby that is almost 2'ish.  I need to see the last three months of your banking statements, credit reports from the majors, and how much money is in your 401K.  No convicts need apply.  I don't really care why you were in the county jail for 24 hours, just skip over me.  In addition, must go through both psychological testing and a lie detector test (I choose the detector of the lies.)  Must agree to have my private investigator research your past thoroughly.  This includes interviewing any women you have been involved with over the last 20 years.  Must have at least 5 of your own friends.  Let me clarify.  These are not friends you inherited from your old flame.  These are actually relationships that you have cultivated on your own.  In addition you need to have at least two friends you are in some kind of contact with from school.  I'll even let it be as late as high school.  You can have pets, but can't treat them like people.  You also can have parents but can't believe they are without flaws.  You must say at least 10 nice things per day, and yes that includes thank you (but a maximum of 3 thank you's will be applied to the 10).


I could go on...but I guess with this short list the answer to my daughter's question is NO AND NOT EVER.

So this is what I've got right now:

• I managed to leave my home 8 days after my husband died.  By the way I prefer the term "died" as opposed to "passed away" which I don't really understand.
• My Facebook posts will resume tomorrow, and I hope I will be accepted back.
• The website I have been developing will be running very very soon.
• Dating seems to be out of the question.
• My mother is brave and strong.
• I have the most beautiful and brave children on the planet.
• This will not kill me.

Our Second Home

This is not what we had in mind when planning on buying a second home.

I want to share some feelings on the most surreal experience of my life.   My husband's death.

Today is the second to the last day of sitting shiva for my husband - and father of our 3 beautiful children.

For those who don't know what it is hear it is:

shiv·a also shiv·ah or shib·ah  (shv) n. Judaism A seven-day period of formal mourning observed after the funeral of a close relative.

Eric and I  decided a few weeks ago, when we were talking to a Funeral Director as we planned his funeral.  That's an interesting experience.

I thought to myself; this is a lot like buying a home.  What lot would you like?  What type of granite would you like?   Would you like a single or double bedroom?  And so the questions went.  You also get to talk about - the multi level casket options - the vault option - Rabbi and the Minister - limo's - flowers, etc.   I now know I need to plan this for myself.

We decide on three days of Shiva.  Nice number for the children - not too long and enough time for most people to get to our home to tell us they're sorry for us.  And I believe that they mean it and I'm grateful.

Tomorrow is the last day of Shiva.  Today The Daily Herald posted a front - two page story about our family and the love we have and the Comfort Quilt and his last moments.  Co-workers, friends, family, children have all gathered at our home over the last 24 hours.  Sometimes it's overwhelming and I can't go downstairs and I then I cry alone.  At other times I'm laughing with my lifelines.  What a strange dichotomy I am living.

I digress so back on target:  New home to purchase

I am grateful my husband was able to purchase a mission style casket.  No pomp and circumstance - but he did like the detail of the side wood accent.  We google earthed the cemetery and zoomed in on a "lot" that was directly under a tree.  "What kind of tree is that," I ask.  "I'm not sure but I can find out for you if that's important."  I suppose I wouldn't have asked if it weren't important.  Anyway, I still don't know what type of tree it is, but I know starting in the spring I'll bring a blanket for my children and me so we can sit and tell dad what's going on in our lives.  In the winter we'll just stand, shiver and chat a little.

My son thinks we should go once a month.  I think we'll go more than that.  Not that it being ten minutes away from a Costco has anything to do with how often we go.

I begged the funeral director to not make my testosterone filled man look like a transvestite at the funeral.  I went in to view the home we had purchased together, where my husband was living.  He looked so beautifully handsome, young, peaceful, and not sick.  I talked to him telling him I was sorry I couldn't do more for him.  I told him the kids and I would be o.k.  I wept.

Back to our second home.

The home we wouldn't share together, but the home he would retire in.  He always thought he'd retire and die out in the country.   In a sense he did indeed retire and he is buried under a tree that will be green in spring.  Imagine it's a cherry blossom?  NAH, I'm not lucky enough for that.

Just in case it isn't I inserted my own.

So, we sit there, under the cherry blossom tree, my now ten year old twins and my almost 2 year old girl. Oh, and I must say that my amazingly - fabulously - brave mommy is with us too.  Unfortunately I didn't mention her during Eric's funeral,   She sacrificed her entire life to live with my children, ill husband, and her daughter who's heart was breaking one day at a time.  Leaving her friends, home, and life.  She chose to be the other person that helped me care for my family.

Toward the end of my husband's life - both new friends and old helped to save our family as well.  I was holding on to one rope and my husband held my hand dangling to death.

So many thoughts I can't seem to stay focused.


We chose a new home for my husband by looking at a grainy Google Earth.  When the limousine driver opened my door and I took my seat in the front seat...closest to the big, giant hole in the ground.  "Here we go" I thought.  We really are going to live in separate homes.

The casket is lowered into the ground.  I take our children's hands,  a red rose held in our other hand.  We then laid the flowers on daddy's new home - put our hands on the oak and said something to ourselves in private.

We had chosen a beautiful home for Eric.  Our children and I will visit often.  We will sit and talk with him as if he is sitting with us.  We'll wait for what we know would be his answer and then we bring up another point.  And so the conversation between daddy and son or daddy and daughter or husband and wife goes on.

The four of us decide that's it's time to leave (I can't really count the babies opinion as she's a little young to really have the ability to make a decision like that.)  We decide that it's a tradition to go to Costco for the most amazing $1.50 lunch and some free samples.

And so the four of us start to leave.  We remember we left the roses for dad in the car.  One of our darling children run to the car to get them.  Every home feels more cheery when you've got flowers in it.

See you soon,

Your forever family

Dear Eric,

  

 To My Darling Husband on His Birthday

For my husbands 48th birthday I wanted to write him a poem of my feelings for him.  Long story short - I didn't do it.  So, if you're into cliff notes of a blog stop here.  


I'm gonna try to do it now. BTW I am not a poet.  That's a little caveat.  What can I write in a poem to my husband that I haven't already said in prior talks - cards - letters?   The only thing to add to the story is the end.  Most of us at 47 don't know that 48 will be the last birthday you will celebrate with the ones you love.  I dare you to try to find a card from a wife to a husband that doesn't have the phrase, "and I so look forward to our future."

Here goes not a poem not a letter but maybe a poeletter?

On your birthday card  I wrote 1/17/64.  I have never made an error on birthday card dating before.   Perhaps I was celebrating your birth as opposed to your current birthday which is today.    Without that day we wouldn't be here today.

I want to say it's all been unicorns and fairies, but it hasn't been.  It's been your fairly average 10 year marriage -  both three year and seven year itches included.  Our share of "what do you mean by that" and "how do you know I meant that"?  

When we first met and you played hard to get, (yes he did), it was so confusing to me.  "I enjoyed our date", you'd say in a note left under my door."  Then you wouldn't call for a week.  Then you'd call and I wouldn't believe it, cause I thought you had forgotten.  Dinner, you'd say....I'd try to pretend to think about it, but the answer was always, "Sure, I'd like that."  Another note, a baseball game came ... another note, another dinner...and so it went for 5 months.  Then.....

.....five months later it was a yes when I was presented with the ring (we chose together) - 3 months after we were married - one year later we had twins - 9 years later we had a baby girl.

We Made It!!

Wasn't sure it would happen but it did.  We got our second chance.  The chance to do whatever it would take to be together as a family, in one home together.  We talked about our retirement in the country where there was barely electricity and we sat on a swing on the front porch together.  Of course, we'd have amazing food brought in somehow, but essentially we'd be just together.  We never really needed much more than each other - when we were indeed together. 

When we met - he a super Republican; me a giving Democrat.  He a conservative Illinoisan me a liberal New Yawkah.  He a thinker of all decisions for a statistically long time;  me - let's just do this.  He a wonderful father; me a wonderful mother.  He practiced the save and wait for something you want theory; I practiced the want, and buy theory.  Together we'd buy only things we really wanted together.  He doesn't care about sports; I could not care less about sports.   He wanted to take care of his family for always and forever; me I decided he was the man I wanted to take care of us.

It's being taken away.

So there are no fairly tale endings.  I get that.  I wasn't necessarily asking for that.  I was just asking that my kids have two parents that love them with all of their hearts and two parents that were willing to do whatever it took.  We didn't know then that there was going to be something to tear apart the promise of always taking care of us.

I will make sure the 3rd chance continues.

• Our children and I will celebrate your next birthday; and the all your birthday's after.
• We will continue to hang your ornaments on the tree (for that matter we'll continue to have a tree).  
• At 6pm each night we'll ask how each of our days were - as we sit down for dinner.  Then one of us would spontaneously tell a story about you that made them laugh.  
• I'll do my best to find a retired engineer to do all of my handiwork and make sure the house was running more efficiently than other home we know of.  
• I will think before deciding.  Not quite as long as you think about something - but longer than I would have had we not met.  
• I'll measure twice'ish and cut once.
• Honesty and integrity are more important than anything in the world.  
• We will remind ourselves that at the end you didn't have a bucket list.  Your life was mostly complete.  I can't honestly say my bucket runeth over with things I haven't yet done.
• Sometimes sweeping things under the rug isn't that bad.  Perhaps not everything needs to be talked about.
• There are so many things I've learned from you.  I believe there was no-one else that could convince me to vote for John McCain and Sarah Palin - but YOU did.  
• Working hard and being proud of what you do should be part of your life.

Birthday Gift

I promise your legacy will live on in our 3 beautiful children.  Each time they succeed I will thank you for helping me make that possible.  I will remind our children that without you, their lives wouldn't be so glorious.    I will allow my children to say, "Yes my dad died physically, but he's in everything I do, so I guess that doesn't really make him dead, huh.  This is the promise I make to you.  

With love,

Alyce

Thank God For Video Blogs (Vlogs)

My husbands video blogs will be the most watched t.v. in this house.

When my husband was diagnosed with Stage IV Kidney Cancer we decided making video blogs for the children's life events would be a great idea.

We put it off and put it off and now time is of the essence.  Even at this time in our lives we are still procrastinating.  Imagine.

I am sitting in my bed next to my husband's hospital bed that was delivered to our home about 4 weeks ago.   But check this out, if he gets help to scoot over as much to his right as possible there's room enough for us to sleep together.  We watch t.v. and he falls asleep immediately and I try to stay awake to listen to his breathing.

Back to the point. Right now I'm watching my husband make videos congratulating our children for completing different life events such as - graduating middle/highschool/college/grad school/PhD -dating - getting married - having a baby, etc...


How does one make a video expressing heartfelt feelings of pride regarding events that haven't happened yet?  Some of these events won't happen for 15 years.  How do you know how you will react at that time?  Of course you'll feel proud and happy when it happens.  But how do you convey that in a video?  


I sit here and watch my husband speaking from his heart to his children's ears and heart and I realize the words of the message are least important.  The heartfelt emotion a completely overwhelming for them is the message.  He has this mastered.


There are sometimes tears of him not being able to be there.  Sometimes claps of congratulations.  Always a love in his eyes that they will watch more than the words that are coming out of his mouth.


My husband's most commonly used phrase in all of his videos  is, "I want you to be happy."   Not everyone gets the opportunity to do this.  Although, if you're alive you can say to the people in your life, I am so proud of you, and I want you to be happy.


Anyway, I'm so glad that this is 2012 and not 1912, or even 1962.  Those were times when people didn't have the opportunity to record their feelings on video for their family members, (who miss them so much) to see how their passed loved one feels about them.


As my husband is becoming more tired it is becoming more important to do as many videos he can physically do.  I'm the coach - "you can do it, do 3 more."  


My children will get to visit with their father at will because of his forethought. Just pop in your personal video and he's there with you, talking to you. They will get to hear their dad's voice - his advice - and feel his love.  


Thank you Al Gore for the internet.

Where are we going

I haven't written for a few days because, quite frankly, I hate writing about stuff that is just crappy all the time.  But the truth is this is crappy situation.  I am sure that those of you who know me know that crappy would not be the word of choice.  A much stronger word would be needed but I really can't think of one right this second.  Give me a chance and I'm sure I'll come through.  So, here we go.

This is what my life feels like

Where are we going to go when my darling husband passes.  It feels like we're going to go to nowhere.  I know that nowhere doesn't exist, but in my mind, right now, it exists and we've got a one way ticket.  This is the road that it feels like we're traveling on.  If you notice you see nothing at the end.   Everyone has a future that is unknown.  We did not know on February 15th when my husband entered the hospital that reaching his birthday on January 17th would be in question.

The family dynamic in 2012 has changed from 1950 and there are many single parent homes due to divorce.  I understand there are many widows.  These women were married to men who lived a full life, I don't count those gals.   Googling how many widows are there that are 45 with three young children.  Didn't google easily so I left it alone.  I mean, does it matter?  I wanted to know exactly how many people are suffering exactly as I am.  Misery loves company perhaps?  


Everyone tells me, my children will be "just fine".   Then we talk and site all of the examples of children who have excelled in spite of the shitty cards they were dealt.   It will soon be my responsibility, alone, to help them through this journey of life.  I believe that they will be o.k. in the long run...it's the short run that is breaking my heart.  I literally mean it's breaking.  It physically hurts.


To watch this process from a wife's perspective is so much different than from a mother's perspective.  Both suck but are so different.  With children you weep for your children differently than for your yourself or even your  husband.  Occasionally, like yesterday I wept for myself.  I cried and cried until I had no tears.  My friends and my Dad were here to hold my hands and rub my head.   It helped immensely.  But like any other chronic illness,  grief doesn't go away with a rub of ones head.  It takes time to heal....I understand a long long time.  I wish I had a time/date certain of when I will feel o.k. again.   Whether I cry or not I feel like I've just sobbed for hours and hours.


In March of 2008 my husband was on a chair sitting next to me and promised he would always be there for my kids and me.  That's not going to happen.  I understand that there are those that believe that people who pass watch over us and help guide us through.  


Things are changing now by the moment.  The nurse is here...there are issues....


Think of my children when you have a moment.

Finally there is laughter.

I realize that this might be funny and funny for only New Yorker's

including

any of the boroughs and Staten Island.

If you don't get it are you f'ing kidding me?

BTW - yes life does still suck.  But just not right at this very second.

Fine  Montey Hall - I'll take the curtain

Just to be clear - life does not ALWAYS suck.

As an FYI, my family still laughs.  As a matter of fact my kids laugh often.  Our baby Lorelei, can now almost repeat words when you say them.  That's fun, but it's even more fun when you translate what she's saying into something totally different and inappropriate.

I am a big Eckhart Tolle fan - but somehow I've lost the ability to live in the now.  I have a tattoo on my belly that covers my c-section scar that says "Living in the Now".  And even with that I forget that right now is all we ever really have.  Make plans, go ahead, but you just don't really know if you'll be able to do any of them.

<GRINDING HALT>

I gotta say I thought I could write an upbeat blog about our sometimes laughter.  Honestly, I just can't.  We may each get moments of peace, but I believe our saddness at this time never lifts.  

A friend sent a story to me.  A beautiful story named How My Husband Taught me To Enjoy Every Sandwich.

I read it and I am so grateful that Lee was able to face death in the face with a grin.  It was inspiring to read.  Unfortunately,  my family is not living this same journey.  I am not insinuating that this isn't how their journey happened, but I dare suggest it is not how "most" journey's happen.

The article speaks about Elizabeth Kubler-Ross' five stages of grief: Denial, anger, bargaining, depression, and then acceptance.  I'm in the What The Fuck Stage, which I didn't notice.  I believe my children are in the anger and bargaining phase.

After re-reading the article for the third time I notice that there is no mention of children.  Not sure that there are no children but they didn't mention, so I assume there's none.   I believe adding the dimension of  leaving young children takes dying to a different level.  

I've often thought how would I feel if it were just Eric and me?  Quite frankly, I think I'd be less devestated.  I would still be devestated, please don't misinterpret, but having "young children" in the mix changes everything.  A large part of my burden is the burden of being a mother of twins that are 9 and a baby that isn't yet two, and how to navigate their lives.  It's not a dead beat dad we can be pissed off at or a part time useless father.  It is a father that no matter what happens will not hold their hand during times when they're older when they need a Daddy's touch and not just a Mommy's.

So, I started to try to write a Happy Harriet blog and it turned right back around.  Those were not my true feelings.  Although, we do share laughter, it's so rare at this point.  I want to be more zen and live in the now and focus on today.  OR I want to go into the street and throw shit around and spit and kick and scream and break everything.  Yeah, I wanna do the latter.  

The five phases of grief are LONGGGGGGGGGGGGGGGGGGGGGGG.    Necessary says the therapist but LONGGGGGGGGGGGGGGGGGGGGGGG.

A Love Letter to My Darling Husband

I miss you so much.  It is not the same sleeping here without you.  I wake up and reach for you, but you're not here.  Feels so strange.  I sometimes wake up and have no idea where I am.  I am so so sorry you are so ill.  This is absolutely the most unacceptably horrible think that could ever happen.

These are the children that will grow up to bet amazing adults.  Watch for them.

You have taught my children and me so many valuable lessons that none of us would have ever known.  These lessons are engrained in all of us now.  "What would dad do?" will be the most common question asked in our home.  We'll think about it for more than 24 hours and then wait a little and make an informed decisions.

I guess in our end we want to know what I've done and what will I be remembered for.  I can promise you for sure that you will be remembered for being able to pass onto your children qualities like, character, honesty, level-headed, love, respect.  You will be remembered as this is this is what you've passed to your children.   Because of how we parented we have given our children the best opportunity to be great and beautiful people.

I told the children they will able to sit quietly and talk to you.  That you are able to hear them.  And then they will be able to make the right decision on their own.  I told Adelaide that I believe after die you're aware of what the people you love are doing.  I asked if she believed that, and she's not sure.  I told her I believe that Dad will give you a nudge when he needs to.  I told her I will keep her safe.  I told her she will be surrounded by people who love her.

A woman wrote to me and told me that there will never be a person who feels about our children the way you do.  I hadn't thought of that before.  I will be the only person who loves our children like a parent loves a child.  I will raise them as we have been raising them.  I will continue to press that going to college is a must - and being happy is also a must.  We will talk about you daily.  Many many times.  We will look at pictures, tell stories...laugh and cry a lot.  We will be so sad.  So so very sad.  The four of us we will be when seated at a restaurant, but we will always be five to me.

When our baby needs you - I know you will be there to guide her

I can't believe this happened to us.  I am grateful for the second chance we were able to receive.  I am grateful that that led to a beautiful gift of a baby.  She will hear you, talk to you, and love you just like Adelaide and Harrison.  When someone asks who her daddy is when she's 21 - she will say his name was Eric.  He's he best father I kind of had in real life, but I definitely have hi in my heart.

Uhoh, it's 12:15.  A big day tomorrow.  Hoping you will be here.  Hoping the move doesn't go horribly wrong.  Having the kids make you projects of love for you when you do come home.  I'll be thinking of you and feeling blessed that "the" day is NOT today.

With all of my admiration, thoughts, and love,

Your wife for eternity,

Alyce

The Longest Short Journey of My Life

I was leaving the hospital on a Saturday night after visiting with my husband.  He's on the palliative care floor with OLD OLD OLD people.

The amount of people that are Pitshetsh (Yiddish for constant complaining) is amazing.  With that said, they have earned the right to complain.  They're old, they're sick, they're dying, and they're pissed about it.

My husband does not fit in with this group of alt cackas <sp. yiddish for old people>  These people look like it's their time to go.  My husband does not.  To this day he looks healthy.  My understanding is he will continue to look like this until his end.

The picture below is of the sad and endless hallway I got to walk down last night after kissing my husband goodnight and goodbye.   There was nobody else there.  Nobody.  Just me with my thoughts of walking alone.  By myself.  Nobody's hand to hold.  Nobody to help keep me and my kids safe.  Just me and the hallway.

Looks very similar to the hallway in the movie The Shining.  And felt the same.

• Lorelei was only 7 months old when her daddy went into the hospital cause his cough wouldn't go away.  
• Lorelei was only 7 months old when we found out her daddy had a very rare cancer.  
• Lorelei was only 7 months old when we found out the prognosis for this disease is poor.
• Lorelei was only 7 months old when without knowing her life soon would go in a direction none of us had ever suspected.

Our baby daughter turned 18 months today.

How did time fly by so quickly.  We always tell ourselves to savor everyday because time flies by, but we don't.  Eleven months has past since our daughter was 7 months old and her dad was first diagnosed with Kidney Cancer.  In those months our daughter has learned to make two word sentences, walk, say Mommy and Daddy, and gives beautiful hugs (including the back pat) and kisses that melt the most stoic person.  How did time slip by?  

• How are we at the place where my husband is in the hospital and the doctors are trying to tweak his meds to keep his pain under control?  
• How are we here so quickly where my husband can no longer take a walk with the dog he loves so much, as his legs are no longer working?  
• How are we here so quickly at the place where my kids need to visit their Dad in our bedroom.
• Time flies when you're having fun is not true - it also flies when someone has an incurable disease that will one day take them away from you.
• How the fuck did we get here so quickly?

I am aware that you are never prepared for this to happen.  But if we could possibly put it off for another 20 years or so when my darling husband is 67 it would still suck but would be better.  So all I am asking for is another couple of decades.  Shouldn't be such a big deal to get right?

I received an email today from a woman who lost her husband 5 years ago when her children where 13 and 15.  The email told me that I will never have a partner who cares about my children as much as my husband and I do.  How true that is.  They will never have their daddy to look over to and find his grin that is full of pride.  This is all true... I know for sure that I have enough love for my children that just because they can't see my husband's grin doesn't mean they won't know it and feel it through me.

In February we thought the prognosis was perhaps 10 years.  Then it was 5 years.  Then it was 2.  Then we kinda stopped asking.

I walked a long lonely hallway yesterday crying out loud; thinking that this will be my walk forever.  Then I got home.  Our baby ran to me screaming, "Mommy Mommy" and kissed my lips...my bigs kids ran over, "Hi Mom and both also kissed me.  It was at that time I realized I wasn't walking the hallway alone - I was just walking down the hallway by myself at that moment.

Seize your moments together.  Cause time flies whether it's fun or sucks ass.

More Wonderful People Who Signed The Comfort Quilt

THE SHIRLEY MacCLAINE

Rain Wilson - Dwight The Office

We still need to keep these autographs coming in.  It is so very important to not lose momentum on The Comfort Quilt Project.  Especially now during such a trying time, it is even more important to my children.  Think think think.  Who do you know that might know someone who knows some.  

Thank you all friends,

Alyce

Thank God for Technology

Friends,

I feel it necessary to address everyone who is reading this.  I do feel an attachment to the idea that people are reading this and somehow supporting my family through the Universe.  So, I will refer to y'all from now on as "friend".

We are "hospicing" at home as opposed to in hospital.  Unfortunately, there are certain things that cannot be done at home "sometimes".  Example - when your pain gets to be too much to bear they bring you into hospital to fix you up.  Kinda like the Tin Man in my favorite movie WOO - and after you're fixed they send you back to your home where you belong.

Wednesday, with our team, we decided the hospital is where Eric needs to be.  We were unable to manage his level 9 or 10 episodes with the equipment we have here.  They felt he would be better and more quickly served at hospital.  This information was given to me when we went into hospice.

We decided it best to wait for the children to come home from school so they wouldn't be frightened when their dad wasn't here.  They are afraid to go to school, because they expect a phone call or to come home and be told their father is dead.  So we waited for them.  They came home as scheduled at 3:00.  They were sat down and told Dad needs to go back to the hospital.  They took it fairly well until 3:15pm.....

...3:15pm is when this arrived!!!

No Young Children Should See Their Parents in One of These

The crying by my children as my husband waited to be lifted onto the gurney was overwhelming.  The holding onto their father, before he was placed on the gurney, but still in his wheelchair was heart-wrenching.  

As Eric was being poorly lifted, (by inexperienced 20 somethings not the gurney) the children then were holding onto my wonderful and caring mother.  They were holding her tightly and crying their hearts out.

I walked out of my house while in my robe, looking around to see if anyone was outside watching.  Watching this most personal of moments.   When they finally got him into the ambulance and settles I said...WAIT!!!  I jumped into the back of the ambulance, hugged and kissed my husband and begged him to come home soon.  We kissed some - not as much as I would have liked, but it wasn't the right time.

Daddy is an hour away but we have Face Time!

Our baby licks the phone as if she's kissing her Daddy.  My children get to see that their Dad is not dead.  That is reassuring.  I get to see that Eric looks the same and not worse.  He's a fighter.  I'm making him fight.  Boy, I hope he wants to fight.  Thank god Al Gore invented the internet.

Years

Speaking of not dead.  My darling son who is "Gifted in Spirit", (which is actually a true gift - like math, reading, science, music...he is gifted in spirit), asked me just last night how many years Dad has to live.My darling sweet boy.  I looked in his deep blue eyes and said, "It is not years."  His eyes opened wide, as if he was surprised to hear this news.  He ordered me to call EVERY doctor and demanded I make Dad better.  I informed him that we did go to every single doctor that could help, and they weren't able to help.  I told him we need a miracle.  He then told me, "I don't want to hear anything else."  He cried.  I cried.

Easier then Real Life Sometimes

My beautiful big girl told me she's tired of pretending everything is o.k. when she goes to school.   She is home from school today.  It's hard for her to let go and just scream it out.  So, I held her.  Told her it was hard for me too.  Told her we would all be o.k..  Asked her if she trusted me.  And held her more.  Until something made us laugh.  We then continued with out evening.

Miracle

....for my husband to come home - ...for a miracle