Tuesday, July 28, 2009

Too Busy for Blogging

Since my last blog we've just been too busy for blogging. The boys and I hit the Keys again, this time staying in Duck Key at a duplex on the water. We went fishing, swimming, boating, and the boys even snorkeled out in the ocean for the first time. We got back at 3:30 AM because I had a county commission meeting the next morning and then the next day my brother came into town for almost a week. We even squeezed in an all female roller derby event that was highlighted by the BYOB family atmosphere and watching half the girls in the parking lot at halftime drinking more then I could. Kurt just left yesterday and I'm exhausted.

Before I forget some of the last blog comments were some of my favorites to date like bungee jumping, Hope for the tiny ta-tas, enjoying the journey more (great advice) and not just seeking the ultimate destination, dreams about us not flushing enough, and a quote from the Hoff about blowing his own mind. You guys are the best and I can't believe I missed his birthday. Where are my freaking priorities!?!

I regressed some since the last blog as I believe I was trying to run away again, do too much to be able to think, and all the while pulling my kids through it at the same time. Don't get me wrong, they're doing great, but they also need some down time with Dad at the house without 100 things going on. So since Kurt left and for the most part the rest of the summer that is ending on 10 August for us, we're huddling down together and taking it easy. We watched a movie and ate popcorn last night, swam and read books tonight, and maybe we'll catch up on those bible studies tomorrow night since my brother would not let me do so when he was visiting. Nathan has zoo camp this week and is loving it so far.

Reese got into the VPK class at Nathan's school so that should be much easier on me next year. I'm interviewing a nanny tomorrow that if all goes well after surviving my mom's and office manager's screening process will begin helping us when school starts back up. The kids will have more consistency, I don't have to pay much more then the two aftercare programs I was paying for, she cooks, cleans a little like helping to pick up things, but most importantly and the final sale for me is that she'll do laundry! No more matching socks at 2 AM or restarting the dryer 14 times to keep things from being wrinkled but then forgetting and starting all over again.

It's late and I have to get some sleep or I'll fall asleep tomorrow during the interview and will probably negotiate a $100/hour salary in my dreams for the nanny. However, I was honored recently by the hospice that took care of my family to write our story so that they could share it as part of their fundraiser for a new hospice house. If you've read previous blogs you know we're fortunate enough to be part of the engineering team on the project, and were involved even before we had experienced the non-profit hospice. Since then I cannot do enough to help them because of the amazing support they provide families through donations. Unfortunately my business has become not for profit too lately but at least projects like this one and a few others make it feel good. They will be sending it out in over 20,000 letters. If we can help even one more person make a donation that would be incredible. Hope already had the most donations ever for any one person. Anyway, for those of you interested in reading what I put together I cut and paste it as follows (sorry for the loss of your evening if you do take the time to read it) and I would appreciate any feedback, suggestions, criticisms, etc you may have especially from Tina and Anna, my two favorite english/speech teachers:

HOPE for Hospice

The moment pierced my soul like no other in my short life to date. It was everything I had HOPED for, feared, prayed for, and the beauty of the moment made all of the previous months’ pain and suffering disappear because we had together, like everything we accomplished the previous twenty years together, finally achieved ultimate serenity for the love of my life. HOPE was the birth name of my two young boys’ mother. They are only four and seven, and learning the toughest life lesson through their own young eyes. To understand how we got to the moment, we have to step back in time like a Wayne’s World sketch to six weeks earlier…doo, doo, do; doo doo do; doo doo do; as the screen gets all fuzzy from my tears as much as the SNL special effects.

It was Thanksgiving weekend 2008, six months after her last surgery, and all she could do was let me carry her limp body out to the swing on the front porch to feel the sunshine for a few moments. HOPE had beaten cancer three times already, once after each child’s birth, and a third time going through a surgery that removed half of her tongue. Multiple chemos and radiation, 15 surgeries, more drugs then Johnny Depp in Blow, and combining holistic remedies such as acupuncture became normal. Throughout all of this she embraced the battles with the spirit of a warrior that made Rocky Balboa look like a pansy. The torture she put her body through to be with her children and I made the Saw movies seem like they were playing the kids game Operation.

The Saturday after Thanksgiving we are back in the ER where we had spent many nights before but this time my confidence and determination was vanishing although I could not let on to HOPE. The doctor pulled me out from behind the curtain unlike any previous visit and before they could say a word my eyes focused on the scan with the white wall behind it as I had become by necessity fluent in doctorese. My eyes stared it down like when I bought the “x-ray” glasses from the back of the comic book to see through clothes (I think the internet has put them out of business now).

As they started to talk I did not hear a word, I did not have to. I could see Snoopy (we named cancer Snoopy because who doesn’t feel good when they think about Snoopy?) enveloping itself all around what was left of her tongue, neck and throat. There would not be any more surgeries and treatments in her life, the warrior was defeated, the toughest person I ever met did not have to fight anymore after seven years, and I had to tell her six hours before her 36th birthday. When I walked back behind the curtain instead of seeing the Wizard of Oz like I had hoped, her sky blue eyes stared into mine and she just nodded because she already knew. HOPE always knew her body best and in her words she did not want to ruin her favorite holiday Thanksgiving. We just started talking about the future of our children and me without the love of our lives in it anymore.

Soon thereafter, the confident take on the world person I had become to get my family through this was overwhelmed with decisions including the children, my own decade old business, the house she had always kept immaculately, so many medical bills it felt like a clown car at the circus every time I opened the mailbox, handling family and friends updates, and my only true desire was to spend every moment with my wife and children. I felt like a puppy dog trying to drink from a fire hydrant. Then the nurse told me someone was coming downstairs from hospice, and I remember with the clarity of the time my first child was born, the conversation we had in the makeshift conference room that was normally the nurse manager’s office.

Suddenly we had a place to go that was not another hospital room, where they did not have nurses with too many patients, they didn’t have the world’s most uncomfortable fold you up like a pretzel leatheresque chair for me to sleep on, they had an individual room, a place for visitors to sit comfortably when she was not up for company, a kitchenette for me as I practically lived there, a place for my children to play during their visits, and most importantly more love from people that started as strangers but instantly became closer to us then family and friends we had known our entire lives. They were treating only her discomfort for the first time, and she was generally comfortable which we had not enjoyed in over six months. Hospice worked with us for weeks to get HOPE home for Christmas and it actually happened just a few days before the holiday.

Mommy was home the days leading up to Christmas, and we knew it was our last together as a family in the flesh. They had nurses stay with us part time, they taught me to administer all of her drugs when she needed them, and even fix her tracheotomy if it popped out which did happen once at 3 AM. They took care of every detail, visited all the time, the hospice doctor made house calls, they brought every supply we could possibly need, let her stay in her own bed, and my boys had mommy home until Christmas Eve. She had regressed too much and late in the afternoon on Christmas Eve so with only one phone call, everyone was back leaving their own families to help mine on the holiest of holidays to bring HOPE back to the hospice. Not one complaint, just welcome back with more smiles and love then I had seen at any family reunion except maybe the Happy Days reunion show when I realized for the first time Fonzi was short and not so tough compared to my memories.

We made hospice our home for two more weeks through the holidays and all they did was make my wife, my children, my family and friends, and me comfortable every moment of every day at all hours. My children did not survive; they thrived through all of this because of hospice. I will always be grateful to the strangers that almost instantly became family (and not normal family, the ones you like to be around). That takes me back to THE moment…

My love had not opened her eyes in days, her breathing was sparse at best, cancer was taking over her organs, her face was so swollen she looked like Peter Griffin on Family Guy, I was holding her hand, rubbing her head and hair as she was looking beautiful after the hospice family had cleaned her up just a couple of hours earlier, and praying and begging HOPE to let her body go. Suddenly she moved her head to look at me, opened her sky blue eyes one last time, she smiled like the day we married, and then escaped her failing body.

HOPE’s spirit is soaring and even though our love is not here in the flesh, her story can help so many others with your assistance. Hospice is building a new house just down the road from the one that became my family’s sanctuary. My wife had cancer four times in seven years with no history in the family and she did not drink or use tobacco. She’s the only woman I knew that didn’t have to make any changes to her eating/drinking when she got pregnant except for the endless nights of pizza we endured during the first trimester. I only mention that because anyone’s life can all change in a moment no matter how they live it. Our entire experience through all of this can be followed via our blog at hopeforthetatas.blogspot.com (HOPE started the blog and named it for the record). I never had any idea what hospice was until the most overwhelming moment in my life. I still go back and visit our hospice family six months after her death and am doing everything possible to help them help other families. I am reliving the most painful time in my life to reach out to you in hopes you will give HOPE to other families in need by donating to the Wuesthoff Hospice House project. My children and I will always have HOPE with us and we will always be grateful to our hospice family.


Myrtle's Mayhem said...

Hope's story is so sad but so beautiful at the same time if that even makes sense. Please let us know how we can donate...

Anonymous said...

One of my mother's best friends died last fall from MS and also had amazing hospice treatment. Please let me know where/how I can donate, and thanks for another amazing blog entry!!


Jennifer P said...

That was wonderful... and I'm sure Anna can help you with the grammar. ;-)