Monday, December 27, 2010

A sad ending to 2010

As most of you know, 2010 was not the best year for our family. In February we lost Mazha, and in less than a month, my sister lost her brother-in-law, Jack, and her nephew, Shawn; only to be followed by Jack’s wife two weeks ago. We lost our auntie Carol seven months to the day from when Mazha past. I’ve attended five other funerals and over a dozen memorial services (four for Mazha) for friends, family members of friends, volunteers and committee members.

Today, we had to put our 13year old Duncan, an Akita/Labrador mix, to sleep. The past month or so, he’s has some incontinence issues and we feared he was having kidney/bladder issues. The vet ran some blood work and did a urine exam and diagnosed him with Lyme disease. One more reason why I hate the deer in the Poconos.

Several medications later, it still wasn’t helping. Some dogs develop severe progressive kidney disease as sequelae to Lyme disease. This severe kidney failure is difficult to treat and may result in death of the dog. Some dogs may also develop heart problems or nervous system disease after being infected, in addition to lameness, swelling in the joints, swollen lymph nodes, lethargy, and loss of appetite.

This morning Duncan kept falling as he was having issues using his back legs, and then he was having breathing problems. He laid on the floor, covered in his quilt, and just looked at us. Kensi, who is his biggest fan, knew something wasn’t right. She leaned down to give him one final kiss, and he finally accepted her love’ns without blinking or turning his head. While he loved her dearly, he’d struggle accepting her affection by running from it – which only made her chase him more. In the end, she finally won out. She'll no longer be able to hide the fact that when she doesn't want to eat something, she sneeks it to him, and he covers for her.
Chris and I fought back the tears as we knew this was the end, and so did he.

Chris went and started the car, letting the seats down to make room for him. Duncan tried standing up, but kept hitting the wall as he attempt to walk. I scooped him up and walked up the snow filled driveway and placed him in the back seat for his final ride, the ride that brought him to all of the other puppies in the sky.
We'll miss you Lil' Man!
September 21, 1997 – December 27, 2010

Saturday, December 25, 2010

Our Christmas wish was granted.

Last year I shared with you all Kensington’s first encounter with Santa Claus. Not every child enjoys their time with Santa. Some kids are plain scared of the fat man with a red suit. I was envisioning her sitting on old St. Nicks lap, with tears streaming down her face and mouth open wide with blood-curdling screams escaping her tiny, and yet very powerful, vocal box. You know the pictures I’m talking about. There are hundreds of websites and books dedicated to these disastrous family photos. I was hoping we’d experience this family tradition first-hand. To me, that cemented fatherhood. Unfortunately for me, our little angel was just that – a little angel. I asked Santa’s little elf to pinch her to make her cry and he looked at me like I was crazy. “No, seriously. Pinch her. It’s for my Christmas Card. There’s an extra $20 in it for if she goes from happy baby to wailing baby. But noooooooooooo. Santa’s little midget with pointy ears that looked like a Spock wannabe wouldn’t buy in to my scheme. Because of his unwillingness to grant MY holiday wish, we got a gorgeous princess, smiling away, on Santa’s lap.

And then this year happened. We arrived at Santa’s village just as he was about to take his cookie & Milk break. I tried to rush her in, but it was a no-go. The velvet rope went up and we were halted in the line. We had to wait for 30 minutes. Keeping a little munchkin occupied in line wasn’t the easiest thing to do. She wanted her hair bows out and I threaten her with never seeing another episode of The Backyardigans again if she even thought about touching her hair. Then after I made that statement, I started to wish she would test her luck. No such luck.

Santa arrived and Kensington was, once again, excited to see him… until she sat on his lap. Tears started streaming down her face. The photographer was trying to get her to stop crying by shaking some lame stuffed animal in front of her face (like that would make me smile). “Take the picture, Take the picture.” She just looked at us. “Take the PICTURE,” I grunted. She did so, and I quickly snatched up my tearful chickpea.

It had taken a year to wait for this moment, but my wish finally came true. Not every child enjoys their time with Santa, and that’s okay. She’s just following the tips she learned from the “Stranger Danger” videos we’ve been showing her.


"Silent Night... not in our house!"

Friday, December 24, 2010

Sew Magical, Sew Cute (what parents will do for their kids)

Let the games begin… about a month ago we were informed by one of my colleagues that Lalaloopsy Dolls were the “in” toy this year. Her boyfriend and her were looking for them everywhere for his daughter, and we were all told to be on the lookout. This line of dolls are cute little creatures with button eyes that closely resemble the classic rag dolls from years ago (Think Tim Burton meets Strawberry Shortcake). The general story of the Lalaloopsy dolls is that they magically came to life as soon as the final stitch was sewn, and the magic that brought them to life also imbued them with personalities that matched the materials used to make their clothes. One Lalaloopsy doll's clothes were made from a baker's apron, and she loves to cook. Another's clothes were made from a painter's overalls, and she loves to paint. You get the gist. To me, it’s a marketing ploy to get girls to beg their parents to buy these rag dolls. They don’t really do anything.

While in Philly doing some Christmas shopping, I came across the last two in Toys R Us and called her to ask her if she wanted me to get one. Not sure if it was one of the ones she already has (There are 10 in the set), I bought one knowing I could return it if needed. Then it hit. The bug. Knowing that I had a coveted doll (I should have bought both), stirred up a monster in me, and it was contagious. The bug bit Chris as well.

The next day we were in our local Toy R Us and the crowd got brutal. A new truckload of dolls had arrived. Out of nowhere, Chris and I knew this meant ‘game on’. We were now going to hunt for all 10 of these sadistic creatures. The makers of Lalaloopsy did it right; they don’t have a single store sell the complete set. You have to hunt. And hunt we did. Long story short (because I have to get ready to Drive to Massachusetts in a couple hours), we were in 3 states, 12 stores, tons of pushing, biting, and pulling hair (between me and Chris for wondering why we’re doing this for a doll that our daughter doesn’t want or care about), and we finally collected the complete set. Many have told us to sell them on eBay to double our investment, but we couldn’t do that to our KGrace. So instead, we adorned our Christmas tree with them. Behold, our life size Lalaloopsy doll.

Thursday, December 23, 2010

Beyond Her Years

It seems like it was just yesterday that we brought our little girl home from the hospital. Now, she’s all grown up. She’s putting on make-up, driving around in her Hummer, going to dances with boys (yes, plural). We’ve once again started the process of, “The Courtship of Kensington Grace”. It seems like many parents want to arrange the marriage between their little one and ours. We’re totally up for it. When it comes to arranging a marriage for your child, what side of the fence you’re on affects your point of view regarding the advantages and disadvantages of the scenario. And seeing that in her school, there is one girl for every 9 boys, we’re the ones calling the shots.
If we leave the west for a few days and transplant ourselves into any culture that promotes arranged marriages, we will, in time, realize the logic behind this practice and appreciate the reasons why they work. Some of those reasons can be attributed to the wisdom of elders. Because they raised and cared for their children, they instinctively know what’s best for their children, which includes the decision to select a life partner. I’ve been in the dating world… it isn’t pretty. If there is anything we can do to thwart her from making the same mistakes we did, why wouldn’t we do so? :)


According to professorshouse.com, the benefits of arranged marriages are:

1. Risk of incompatability is diminished (we know what’s good for her, and she’ll like it)

2. Idea of divorcing is unthinkable (Our new stance on life: If Gays can’t get married, Straights can’t get divorced. That should be the sanctity of marriage – 2 years ago, 48% of our elected House and Senate representatives were divorced. And yet they claim that gay marriage would be the fall of our country’s morals.)

3. Extended family support has its benefits (the more money the parents have, the better your chances. Support me, baby, support me all you want!)

They claim, there are some “minor” disadvantages as well.

1. Inability to make up one’s own mind (quite frankly, I think this is over-rated. I would much rather wake up and follow someone else’s schedule & plan, than to try to come up with my own. Call me lazy.)

2. Love takes second priority (Love? As my good friend Tina Turner once said, “What’s love got to do with it?)

3. Interference from extended family (See number 3 above. I can be bought out… and so can our daughter. She takes after her pappa!)

Let the bidding begin (please, bid increments must be in at least six-figures).

Circumventing Clause (Mrs. Clause, that is)

It has been a complete whirlwind in our house for the past month. With numerous social events on the calendar, five – yes, five birthday parties for our munchkin, mixed in with volunteer committee meetings, both of our sisters visiting (one from Texas, one from Atlanta), and two out of state conferences that I attended, I never knew where I was coming from or going to. Chris started sending me calendar invites so things would start popping up on my blackberry so I would know where I needed to drive to next, for the next event he committed me to. Funny, as mentioned in the previous post, he never sent the calendar invite for a 6pm Friday night holiday party. He too probably thought the timing was off and he didn’t want to confuse me anymore than I actually was.

Due to my coming and goings, Chris has been a trooper and wrapped up all of Kensington’s Christmas gifts from us… and all of the gifts from Santa are in the basement and have been unboxed, assembled, batteries inserted, and ready to be placed under the tree (well, we say that, but the way our tree is situated, it’s not really feasible). Albeit, one gift has remained upstairs because of the sheer size of it, and because it came from Mrs. Clause, not Santa himself. Mrs. Claus has been generally depicted in media as a fairly heavy-set, kindly, white-haired elderly female baking cookies somewhere in the background of the Santa Claus mythos. That’s not the case here, though she does assists in toy production, and oversees many elves on a daily basis. Her personality tends to be fairly consistent; she is usually seen as a calm, kind, and patient woman, often in contrast to Santa himself, who can be prone to acting too exuberant (come on, he’s on a deadline and his helpers have little nugget-fingers. Do you know how hard it is to use power tools with little snausages attached to you palm?) While, in the media, she is sometimes called Mother Christmas, and Mary Christmas has been suggested as her maiden name; we call her friend, advocate, co-architect.

Mrs. Clause’s gift was behind closed doors, and Chris and I have made every effort to ensure that KGrace didn’t see it if we had to go into the room. We’d crack the door open just a smidgen and creep in, only to hear a soft “knock, knock” followed by Kensington’s tiny fist pounding on the door. She knew something was up, and she was going to do her damnedest to get to the bottom of it. So, imaging our surprise when after dinner last week, we head into the living room for an exciting episode of “The Fresh Beat Band” (seriously, we need some adult entertainment in our lives. Nick Junior is starting to make me have nightmares), when from around the corner we hear, “Beep, Beep!” Chris and I, along with his sister, Rhonda, looked at each other. We’re pretty familiar with all of the toots, horns, chimes, etc on her toys. This was one we hadn’t heard before. We get up and follow the “beeps”. We come around the corner and in the storage room... the door is open (how in the world did she turn the knob? Note to self, get more child-proof door locks). And there she is… sitting in her gift. She flipped the power switch, fastened her seatbelt, and was ready to burn rubber.

Moral of this story: What our daughter wants, our daughter gets. Lord, help us all!

Tuesday, December 21, 2010

“Got Jesus on my necklace”

These are words you don’t necessarily want your daughter to spew out in public. It’s not that we’re not of the Christian faith, or that we want to conceal our beliefs from public viewing; but repeating the mantra of Ke$ha (who isn’t the ideal role-model we would have selected for HRH), is a little embarrassing. For starters, she has a character in her name. Not just any character, but one that made me correct people when she first hit the scene because I thought she went by “Casha”. It was an understandable mispronunciation. And just look at her… glitter on her eyes, stockings ripped all up the side, looking sick and sexy-fied. Oh no-o-o (We should go-o-o). [editorial comment: two hours after this was posted, Chris gasped and stated that he was appauled by the previous two sentences, as well as the title of this post. He didn't realize this was pulled straight from Ke$ha's lyrics. So, if you too are not in tune with today's music, please don't be offended. This blog just may not be for you. Yes, Chris, I'm talking to you. Hahahaha.]
Kensington, in a display of expressing herself, has turned into a karaoke diva. Give that girl a microphone and a smoky bar-like setting, and she will own the stage. Unfortunately, she has been banned from most of the clubs in Eastern PA and Northern New Jersey (they stated that since she once signed a contract with a recording company, she’s ineligible to participate in “amateur” competitions – stupid rules. If there is wiggle room on American Idol, there should be the same considerations here at our local cabarets). Given that she can’t utilize the nightclubs as an outlet to illustrate her talents, she has deemed her car seat in the backseat of my truck the next best suitable place. Her audience… me and daddy (and whoever is lucky enough to gain admission into the two open spaces next to her). It’s a very, let’s say, up-close and personal performance. We look at it as if we were given backstage passes to every performance. It’s nice to know those connected to the box office.

This talent first showcased itself about eighteen months ago when Kensington was first introduced to the Black Eye Peas and “Boom Boom Pow” while traveling to and from school. She’d become overly excited each time it played on my SiriusXM radio. But anytime a country song would play, she’d scream with repulsion (Chris loves playing with my channels, so often when I start the car I get the pleasure of listening to his selections – Country and Christian - both I change as soon as I can). I’m don’t blame her… we have similar musical taste.

It moved from one song, to the themed songs of “The Backyardans,” “Blues Clues,” and “The Fresh Beat Band;” each she would hum along and bounce her head back and forth… now she’s included her signature move - stomp, stomp, stomp, quarter-spin, fall and repeat. Now she has expanded her participation beyond humming, and lengthened her repertoire to Top 40. Ill-fated as it is, Ke$ha and “We R Who We R” have been on the list for some time now. A few months ago, she would sing back-up… only spouting the last word in each sentence (which, because of Ke$ha’s own limited vocabulary were “dumb,” “numb,” and “young.” I swear that woman is a modern day Sylvia Plath). Now, she’s taking center stage and demands, at times, audience participation (which to me is just intolerable. When I pay good money to see someone in concert [Beyonce], don’t tell me “This is my favorite part of the concert, this is where you sing to ME” and point the microphone to the audience and expect us to belt out “to the left, to the left, everything you own in the box to the left”. Sorry. That was a tangent. I know. But it really does bother me. It’s bad enough I have Drunken Dianna next to me and I have to hear her sing along while I want to be “in the moment” with my bodacious Bee, and now I have 17,998 other inebriated people trying to camouflage a tune [Baby you dropped them keys, Hurry up before your taxi leaves].

Okay. I’m Back. Sorry Dianna, whoever you are. I didn’t mean to call you a bad singer. I was just using you as an example. We’ve all been next to a “Dianna”, and you just happened to be at the right concert at the wrong time.

Kensington now sings along to Bruno Mars, Rihanna, Neon Trees and her pappa’s personal favorite, Pink. Granted, her use of our language isn’t as extensive as, oh, lets say a 3 year old, but she tries. So, Chris and I look past the times when we too are bopping along to Mumford & Sons’ “Little Lion Man”, and it sounds like… I hate to say it… Dianna is riding along with us in the back seat.

Regretfully, Kensington signed the above mentioned contract with her record agency under protest by her management team (a little Bieber-esk if you ask me), and thus is unable to produce or perform in any videos that can be posted on this blog. We’ve tried to capture her on using several means… camcorder, video camera and even my blackberry. While she may love the camera to get her picture taken, she knows when we’re shooting video and refuses to belt out another tune. That’s what I call a Diva, with a capitol “D”. Sorry Dianna, I'm not talking about you again.

Monday, December 20, 2010

Our own little "DADT"


On the eve of this country’s repeal of “Don’t Ask, Don’t Tell”, we had our own little DADT incident here in our household. You see, Chris and I had another one of our communication mishaps. Friday night we had a holiday party to attend, and I assumed it started between 7 – 7:30. So, image my surprise when I received a call just prior to 6pm asking me where I was at. The party was to start at 6pm and I was nowhere close to the house. I told Chris to go without me, and I would pick Kensi up at school, get us both ready, and would be there by 7:30 (the proper time a holiday party on a Friday night should start, especially one so close to Christmas, which was cutting into my precious shopping time).

I enter the house with kiddo in tow, and rushed to change & juice her. Chris had her outfit picked out and her diaper bag was packed and ready at the door. I quickly hid the presents I was able to buy, and rushed upstairs to iron a dress shirt and sweater.

Chris and I are at a stage that we can actually turn our backs on Kensington and know that she’s going to be okay. Every outlet is plugged up, every cabinet drawer and door is latched or locked, and all sharp objects are hidden underneath my pillow waiting for January 1 when Chris’s life-insurance through both of our policies double. She’s content with playing in her playroom… putting her baby dolls to sleep, making Elmo drink from the teacup, rolling around in her ball house or her ball pool, pushing her stroller from one side of the living room to another or climbing the ladder to get the candy canes placed on the tree above her reach level.

I’ve finished ironing and, with a little pep in my step, called down from the balcony, “I love you, Kensi.” I hear her call back, muffled, “I love you, papa.” Things are good. I stroll to the bathroom, brush my teeth (note to self, no red wine for at least an hour now… Pinotage grapes taste way too sour when mixed with fluoride) and add a dab more product into my hair. Once downstairs, I head to her playroom (oh, the days of having an actual dining room). No Kensington. Okay, I see. We’re playing hide-and-seek. She’s in the pantry (i.e., taste-testing the bag of cookies to make sure Pappa and Daddy won’t be food poisoned – I believe in a past life, she was a royal food assayer). I open the door. Nothing. Really? That’s the first place I would have hidden when playing this game. I hear a whimper from behind the office door. Duncan is locked in the office. I’m sure our chickpea is in there as well. I open the door to two blue-bugged eyes staring at me. A black Sharpie hits the floor, with the cap off. She comes running, pushes me out of her way, and into the living room she goes. I look around the room. Yep. There it is. One of Chris’s filing cabinets that she loves placing stickers and magnets on, has now been tagged. I think she’s covering for Duncan. She found him midstroke and took the permanent marker from his paws to beg him to stop. She had to have shut the door behind her so I wouldn’t hear her scolding him.

She’ll never be labeled as a nark. We taught her right. So for now, we won’t ask… because surely, she’s not telling.

Saturday, November 27, 2010

Mary had a little lamb...

Okay, I know it's after Thansgiving and we should be gearing up for Christmas, but I had to share these pics of our little lamb when we went pumpkin picking before Halloween. She has such a blast running around the hay-maze and playing with all of the pumpkins.

Murky Turkey

Last night could have been dubbed, the Murky Turkey gone arye!

After Chris came home from 12 hours of battling the Black Friday crowds, we packed the Nitro with our overnight bags, Mazha’s meat stuffing, two pies, a couple bottles of wine, and our homemade gag gifts and headed to the birthplace of Martha Stewart – Nutley, NJ.

Kensi’s four midget-legged friend, Oscar, was waiting at the door for his playmate to arrive… and from the moment we entered to the moment we left, they were almost inseparable. Running from one room to another, hiding each other’s toys, jumping on beds, throwing/rolling balls down the hallway, they each exhausted each other.

When Kensi wasn’t wearing Oscar out, she was batting her eyes to everyone in attendance to get them to read to her. It worked. And why wouldn’t it? She’s gorgeous!

The new twist this year, created by our host Uncle Kevin and Auntie Carmen, was the “Murkey Turkey”, a white elephant type of gift exchange. With Jem’s version of ‘Yellow’ and Adele’s remake of Bob Dylan’s 'Make You Feel My Love' playing in the background, each gift swapped was more creative than the next (except the lame Jersey Shore calendar that Chris was stuck with). Our guidelines were only that we didn’t spend more than $20, and that it couldn’t include wine or gift cards. Each guest was encouraged to be creative…and we were told inside-jokes were highly encouraged. With this crowd, that meant to be a little on the mean-spirited side. :) Chris came up with the second-best gift; a custom made Monopoly game not only poked fun of Jeff, but incorporated everyone in the “Chance” and “Community Chest” portion of the game. Kensi was the recipient of the best gift of the group, a coveted LaLaLoopsy doll from her Uncle Jason.

Food, Fun and Family… this is what Thanksgiving is all about.

Friday, November 26, 2010

Thanksgivagay: Revenge of the broken Sid Dicken’s Tile

Today we will celebrate our 9th annual, Thanksgivagay: Revenge of the broken Sid Dicken’s Tile!This sequel picks up where the last one left off. The gang is still haunted by memories of Thanksgivings past. Who can forget the intestinal trauma they endured in "Thanksgivagay Part 2: The Milk Tart Always Rings Twice", and "Thanksgivagay Part 4: Hide your serving fish soup in ANY planter you can find", the horror of emaciation they witnessed in "Part 5: I'm Not Hungry (a.k.a. Meet the Olsens – MaryNate & Ashley)"... the terror of "Part 6: Guess Who's Coming to Dinner? Jeff's Fighter Pilot, That's Who!"... the gay gasp heard 'round the world in "Part 7: Who Drank Paul & Chris’s Forbidden Wedding Wine!?" and the highly anticipated "Part 8: Guess Who's Coming to Dinner This Time?"
So what could possibly be in store for our gaggle of gays and the straights who love them this year? The gang is leaving the past behind and moving their annual celebration to Nutley, NJ. The guest list is limited (yes, one more sad excuse offered up by MaryBeth), but there are bound to be some surprises in store. Only one thing is for sure: the activities will surely be great and memorable for years to come.

Will the gang ever be invited back to the Poconos? Will Jeff bring a plus one? Will Diane bring another foreigner looking for a way to get his green card? Will Kevin scold Carmen in public for his behavior? What will our Princess Kensington be wearing? There are so many unanswered questions. We’ll just have to wait to find out!!

Thursday, November 25, 2010

New Traditions

The holidays are upon us, y’all. The leaves are falling, squash is in season, and there’s no doubt about it: It’s Thanksgiving time. Or, if you prefer, ye old time to hang out with the FAMILY.

For us, this holiday is a time to get together with our family… not the ones we were born into, but the one we created when we moved to the East Coast 13 years ago (oh my, has it been that long?). About 9 years ago, there were a group of us that were all traveling home for Christmas and didn’t have any plans on Thanksgiving. The small group of us got together and created the first Thanksgivagay, and we haven’t returned home since. Now granted, some of us have to miss a year for true family commitments, but we always return to enjoy our favorite festivities of the year with our friends. Through the years, our group has grown, people come and go, but the memories – and pictures – will last a lifetime.

We’ve found that the single most important thing anyone can do to enjoy Thanksgiving is to try not to think about its true history (especially not the events that transpired between the European settlers and the Native Americans following the original Thanksgiving in 1621). While some contemporary family tables can feel like an emotional war-zone (especially when you’re the only gay one at the table), the original Thanksgiving ended up leading to an actual war-zone, and thinking about it tends to put a damper on the holiday. In fact, I have found it is best not to think about the true history of that time period at all. Don’t bring up in conversation the Puritan punishment for homosexuality, because it’s a drag!
If you catch yourself thinking about the origin of Thanksgiving, I suggest you do what I do. Immediately ask yourself: What if the Pilgrims were gay? Native American fashion would surely be more popular today. If the Pilgrims were gay, they probably would not have befriended the Indians and then deceived them in order to have control of the land. They would more likely have been the Indians’ best friends for a long time, especially on the weekends. Chances are they would have danced a lot with the Indians, listened to all their problems, and offered advice and suggestions that are both witty and fun. Sperm donating to lesbians would be a time-honored tradition. And much of our shared land would still be home to a thriving, spiritual and mostly peaceful native people.

Since our gathering this year is taking place on Friday after everyone drudges through the super-sales, we decided not to cook for ourselves but to go out for dinner. So, with Kensington dressed in her Allison Rose original, “Family Traditions” dress, it was off to the Pirone Family’s Country Estate we went.

The holiday feast was to die for! Our harvest table had festive salads and homemade relishes, country-style chowders, seafood salad, smoked fish, oysters and fried clams… and that was is just the beginning of the holiday feast!

We were soon served classic favorites like: Smoked Loin of Pork, Flounder Neptune - white filet filled with seafood stuffing, Fresh Herb Stuffed Breast of Chicken, Long-Island Roasted Duck and of course Roast Vermont Turkey. All of this was served with all the trimmings . . . candied sweet potatoes, sausage stuffing, mashed potatoes, fresh vegetables and home-style gravies. With a spread like this, I don’t think we’re ever going to cook our own dinner again! It was nice be catered to. We had Joe and Tonya, our servers that were refreshing our apple-cider sangria and clearing our plates at the wave of hand. Definitely something I can get used to. To top it all off, the desserts are as American as apple pie with ice cream - Kensington choose the butter-pecan ice cream. Chris opted for the Pumpkin Pie with lots of whipped cream and I had the White Chocolate Harvest Spice Cake with raspberry drizzle. Walking out, we entered a cool bliss of snow that had started to fall. Now, this truly feels like the holiday season.

Thursday, September 23, 2010

Remembering Mazha

Today there was no cake. No candles. Just a simple flower arrangement that we laid at the entrance of her hospice room. She would have been 64 today.

To honor her memory, we’ve started “Team Dudek” for the Walk to Defeat ALS that is taking place this fall (October 30, the week before we scatter her ashes). This is an exciting opportunity for us to work together to support those like Kensington's Mazha who are affected by Lou Gehrig's Disease and to spread awareness of the urgency to find treatments and a cure.

No one else like Kensington should have to lose their Mazha to a horrible disease such as ALS. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis... Mazha fought her battle from September 12 (the day she was admitted into the hospital) until Feb 22 (the morning she lost her battle). The frightening thing is every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. All we can say is "enough is enough!"

For a recap of Mazha's fight, visit here and scroll to the last post (bottom of the page) and read that one first.

To make a donation (yes, your $5 really can help!), you can visit "Remembering Mazha"

Wednesday, September 22, 2010

In my life... I loved you more.

As our family approached the seven month anniversary of Mazhas passing, we were hit with another emotional blow. Her sister, my “Auntie” Carol was admitted to the hospital because of issues with her heart, which due to complications, affected other organs.

Kensington and I had a prearranged flight to Texas, to remember Mazha on her birthday (tomorrow). But earlier last week Auntie Carol was moved from the hospital to hospice. The same facility Mazha was cared for in. I received the call at work from my Simone, my sister, who with emotion stuck in the hollows of her throat, told me that she was in hospice… and in room 103 - across from where Mazha passed.

I wrapped up things at work, changed my flight, and headed ‘home’ on this past Thursday. The past three trips home haven’t been pleasant… all arranged with an delicate mission to accomplish - a diseased to diagnose, a last Christmas to celebrate and a funeral to plan. This trip wasn’t going to be much different.

There are places I remember. All my life… though some have changed.
Some forever, not for better… Some have gone and some remain.

Initially, walking into hospice on Thursday I was fine, until we hit the Chapel. I tried to swallow and couldn’t. We got to the nurses station and were greeted with recognized smiles. We turned the corner and passed the kitchen - tears flowed uncontrollably. Moms room was just inches away. Billy Strait was occupying her former bed. (Unfortunately, the next day the bed was once again open).

All these places have their moments. With lovers and friends I still can recall. Some are dead and some are living, in my life I've loved them all.

With a quick smear of the tears with the back of my hand, we entered Auntie Carol’s room. That afternoon, she was somewhat lucid - knowing that we were in the room, shaking her head to let us know that she understood what we were saying, all while her eyes remained closed.

Friday, Kensington accompanied us. She knew the building like she was in it yesterday. “Phhhish” she called out as we approached the ‘quite room’ that houses the aquarium. The pitter-patter of her feet running down the hall to the playroom aroused the nurses to come and find her. They had been waiting for her arrival for days - recognizing the family from the moment Carol was admitted - and asking when “lil diva” would be arriving.

Saturday… Sunday… Monday… Tuesday - each day her responsiveness was getting slower until there was no more. On Monday we were told her vitals lead them to believe it would be anywhere between “ two hours to two days”. Today, seven months to the day that Mazha left us (just before 2pm), she passed away. Wrapped in love with her own version on Lois… she was comforted in her final days by “Flint”.

Though I know I'll never lose affection…for people and things that went before. I know I'll often stop and think about them. In my life I love them all.

Saturday, August 7, 2010

Child Prodigy

If I’ve said it once, I’ve said it a thousand times (and trust me, I know I’ve said it at least a THOUSAND times). Our precious princess is very advanced for her age. She has reached 96.8% of childhood milestones months earlier than the average child. From holding her own bottle, rolling on her side and rolling over, crawling, standing, cutting teeth, speaking, changing her own diaper… you name it, she did it earlier than your child. So, the first 19 months of her life has been – I dare to say – a breeze. Everything that her therapist tell us reiterates that the potency of her environment determines the pursuits toward which her energy will be directed, which has shown that an incredible amount of skill can be developed through suitable training. Golf claps to Chris and me.

While planning her second birthday, which is only 4 months away, we decided that we should invite her contemporaries to the festivities. Dr. Doogie Howser, Lisa Simpson and The Royal Tenenbaums make the list.

So, with her advancing at the speed of light, it shouldn’t have surprised us one bit that our Munch (we have a hundred and one different nicknames for her - it’s downright adorable how much we love her) hit another traditional milestone earlier than expected; the terrible twos.

Up until two weeks ago, we were blessed with our own little version of Saint Ambrose. Then we went on a weekend trip to Niagara (New York side and Canadian side) to visit with our bio-family, and something about the 12 hours roundtrip trip in the truck turned our angel into the princess of darkness.

When it came to bed time, we’d normally read her a book or two (she picks them out, which the first one is usually one of a variety of pop-up/flip-up peek-a-boo books), a slow dance to Steven Curtis Chapman’s Cinderella, and then she’d point to her hutch and select from the array of stuffed animals and dolls that she’d want to join her and Princess Something-Something (seen here) into the land of Honalee.

Early in the morning, she’d wake up and play with her dolls - peepless - in bed until one of us would come and, in which she’d pop up like a weasel, throw her arms in the air and give the biggest hug ever – each day getting bigger and bigger. She’d point to the outfit she’d want to wear that day and then point to her shoe collection in which I’d let her know which ones she could choose from. We’d hop in the car, listen to Hits 1 on SiriusXm, and we’d be off to daycare. Once there, she’d run into her classroom without a care in the world. Wave bye-bye to me, blow me a kiss, and off to her into her world she’d go.

www.blablakids.com
When I’d pick her up in the afternoon, she’d bop back-and-forth in the truck to the song that was playing, singing along, and run into the house once we arrived. Straight to her high-chair, she would welcome whatever food was presented to her. After completing the entrée, would be granted dessert - all while uttering the words, “please” and “thank you”.

Afterwards, she’d climb the stairs and eagerly head to the bathroom in which she’d squeal with delight at the thought of taking a long, playful, bubble bath.

Then the routine would continue. And happily so.

Now, our little Beelzebub has bucked the system. When it comes to bed time, we still read and slow dance, but now it is followed by two hours of endless crying and bloodcurdling screams. The more we rock her and rub her, the longer she stays up. The moment we think she’s asleep, we turn to head out the door and the screaming begins – again… followed by throwing of the dolls, the blankets and the pacifier across the room. This game continues until the wee hours of the morning. Needless to say, the lack of sleep that both Chris and I have experienced over the past fourteen days has brought us to a new level of exhaustion.

She no longer wakes and plays with her dolls, because she no longer sleeps and the dolls have been ostracized from the crib. Princess Something-Something has now been converted to a voodoo doll of one of her teachers. She could care less what she’s wearing and the transition from the car to daycare has been one that even the toughest heavyweight fighter couldn’t bring down. Her teachers try to distract her so I can make my way out of the room, and as soon as she see’s that I’m no longer with her, they have to bring in the priest to exercise the demons out of her.

When I now pick her up in the afternoon, she wants every toy that I DON’T have in the truck to play with. No matter what I give her, she chucks it across the vehicle. Once in the house, she still goes straight to her high-chair, but refuses every type of food existing - - unless it is pudding or pretzels. Needless to say, we’re starving her. After force-feeding her (gently… we don’t need the Division of Youth and Family Services knocking at our door), she wants to stay up and play, and forgo her once beloved bubble bath. We watch the latest episode of The Backyardigans, in our bed with the lights off. She’s propped up on a pillow and covered with a blanket. All while uttering the words, “NO!” and “MINE!”. We ‘rock-paper-scissors’ to see who looses and has to bring her into her room.


We understand that she’s teething, so hopefully this explains her recent transformation. If not, Chris and I may be going on a much deserved vacation – just the two of us. For a long, long time. Meaning, never to return.

Sunday, April 18, 2010

Talking to heaven...

Dear Paul,

I am glad that I am able to bring you comfort. I wanted to pass on the comfort which I received from God throughout my lifetime. Life is filled with pain, life, death, joy, suffering, surprise, and a whole host of other things. One thing I learned was that God does not change through circumstances and emotions. Each stitch in the quilt represents each tear that I have shed over my lifetime. Tears of sorrow and tears of joy. As you wrap yourself in me, you are wrapping yourself in the comfort that God had given me. Count the stitches... The Bible says that God collects and saves our tears in jars...how precious! May you continue to fine comfort in my quilt and pass it, along with your tears, to someone who needs that same comfort.

With love,
Lois


[Lois... words can not express my sincere gratitude for your post]
 
 

Whom ever said "time heals", lied.

It’s been 55 days, a total of 1,650mg of Paxil digested, the purchase of 6 (yes six) books on the afterlife, a visit with a vivacious medium, over a dozen public breakdowns, numerous avoided telephone calls, 138 sympathy cards, at least a case of tissues, numerous days of continuous sleep countered by numerous days of no sleep at all before I could even think about writing the words…

Dear Lois,”

And when I finally see them on the screen, I find myself reaching for anything in the vicinity of the couch to wipe my eyes with because the emotion that is now flowing from behind my sockets have caused the words to blur before me.

I haven’t wanted to update this blog because then it would become real… and not just a horrible nightmare that I can’t seem to wake from. I can’t tell you the amount of times I’ve reached for the phone to call Mazha and then realized she’s no longer here. And yet, I can’t bear to delete her phone number from my wireless phone. I’ve tried to put on this façade of strength, but inside I’m nothing but weak. I have mounds of “Thank Yous” that need to be sent out, but again… if I start writing them, it makes this real. So the cards lay upstairs on a table, with everything else I brought back from Texas. Even today, 55 days later, I was on the phone and was asked how I was doing and I couldn’t catch my breath because it’s such a blow. I had to quickly end the conversation and then sat in my car in front of the mailbox unable to hold my tears back.

And while I have so many thoughts running through my head right now of what to type, I’m realizing I can’t. I’m sorry. I’m finding it hard to breath, and equally hard to swallow. Since I’ve started writing this tonight, it has taken me over an hour just to type this much. 330 words.

I will though answer the question I have received from many… “What happened with Lois?”

Well, I smuggled her across state lines and she’s spent nearly every night wrapped around me. She needs to be ‘fixed’. In the south you can find quilt shops everywhere that sell new creative works, as well a able to stitch-up quilts that have gotten a little torn and tattered… I can’t seem to find anything similar in NJ. You see, the morning of funeral, I cut a small panel of Lois… the quilt that gave me so much comfort in my own time of need, and placed it in the coffin with Mazha. For the weeks leading to Mazha’s death, Lois kept me comfort, fought my fears, and gave me warmth. I thought it was fitting that a piece of her be placed with Mazha to give her her own sense of comfort and to ease her fears. I know that she'll be up to the challenge.

Monday, February 22, 2010

Rest In Peace, Mazha

Dear Lois,

Joyce "Mazha" Dudek, 63, entered into eternal rest at 11:44 am on Monday, February 22, 2010.

Memorial services will be held on Friday, February 26 at 1pm at Jackson’s Burks-Walker-Tippit Funeral Home chapel in Tyler, Texas, with Father Tim Kelly officiating.

Born and raised in Ludlow, MA, Joyce moved to Tyler, TX with her family in 1977. She was an avid gardener, motorcycle enthusiast, and loving grandmother.

She was preceded in death by her father, Paul St.Onge of Ludlow, MA.

Joyce leaves behind her loving family including her husband Eugene; daughter, Simone and husband Randy of Tyler, Tx; son, Paul and husband Christopher of Bushkill, PA; mother, Lillian St.Onge of Wilbraham, MA; sisters, Carol Pollitt and husband William of Tyler, TX, Paulette Bergeron of Whitehouse, TX, and Lisa Tenczar and husband John of Chicopee, MA; granddaughters, Jordan Nicole, Roni Elizabeth and Kensington Grace; as well as many extended family members and friends.

Visitation will be on Thursday, February 25, from 5-7pm at the funeral home.

Potted flowers are welcomed or contributions may be sent to the ALS Association of North Texas at http://web.alsa.org/goto/dudek


  

Saturday, February 20, 2010

So help me God...

Dear Lois,

Nothing much changed for Mazha today. She slept for a majority of it. Since she’s been here, each day someone has gotten her sweet-tea to drink. In the beginning, we’d hand it to her and she’d drink it from a straw. Over the past two days, it’s been hard for her to build up enough energy to take a sip. The nurses have been giving Mazha her pain meds either through her feeding tube peg, or by syringe… so I asked a nurse for a couple syringes so I could shoot the tea down her throat. She seemed to like it. Actually, by the look on her face, you can tell she loved it.

I ended up changing my flight. Originally when I booked the flight – before I saw her, this was just a visit (hoping she’d get better and go home). I though I could spend two weeks down here, go home for a couple weeks, and head back down. My, how thing have changed. I was supposed to fly out this evening. Now, who knows when we will return back to PA / NJ.

On the way back from the bathroom this afternoon, I ran into one of the snack volunteers. Each day someone pushed a cart around with juices, candies, chips and muffins, all free for those visiting (or like us, setting up camp). I went top grab a juice for Kensi when I looked closely at her. I knew this woman… she was my fourth grade teacher, Mrs. Harrell. I haven’t seen her in over twenty years. To be honest, I thought she had passed some time ago. She lives down the street from my parents and I would see her a couple times a week taking an evening stroll. After twenty years of not seeing her, even though my trips back have been brief, I just assumed. She asked my if I had married ‘a local’, and not to get into how things have changed over the past twenty years (though she’d have to have known that back then I had the hugest crush on my friend Cody), I told her I married someone from the Dallas area.

Hey… it’s the truth, just not the whole truth.

Friday, February 19, 2010

Dear Lois,

“Where’s Miss Diva?”

This is the question we get from the nursing staff when they don’t see Kensington making the rounds in the morning. She knows every little nook and cranny of the facility. She been to every veranda and swing set, every gazebo and birdbath. Today she took organ lessons in both the chapel and the west patient wing.

She’s hid in the cabinets in the playroom and under the tables in the soda shop. She loves her daily wagon rides… that started just around the hallways until it started getting warm again, and now consist of ever memorial walkway and concrete path.

Little Miss Diva has also befriended the therapy dogs. Bailey, who is smaller than Kensi, broke protocol when he licked her. It wasn’t his fault though. No matter how many times we put a bib on her during feedings, she peels it off and food goes everywhere. Today she wore most of her snack – honey gram crackers. It was just calling his name so he helped clean her up a little.

Mazha’s fever is still over 100. They’ve continues to change her pain patch and check in on her every other hour. It’s gotten to the point where she knows we are in the room, but she’s not communicating that much. In the past, at night, she would smack her lips and the sound would get our attention. The smacking has stopped. She’s now only able to squeeze our hand and raise her eyebrows.

Last night Simone and Auntie Paulette called Memé, our grandmother, so she could talk via speakerphone to Mazha one last time. With the phone propped by Mazha’s ear, Memé was able to say some final words. She was happy to know that Mazha was alert enough to know that she was on the phone and knew what she was saying. It was an extremely touching and emotional moment… one that made Memé’s day. She told all of the nurses at the assisted living center, as well as all of the residents, about how fortunate she was to have that opportunity to speak with her daughter one last time.

   [sorry for the picture formatting. It was getting late and I couldn't stand dealing with it anymore!]   

Thursday, February 18, 2010

I love to shop... but this was too much!

Dear Lois,
This morning as I wrapped you around my legs and watched, in a daze, Kensington eat her breakfast Kashi, I realized that the end is closer than we had hoped. Mazha is starting to say things that are not making sense. Some of her forced-whisper statements could just be chalked up to confusion, “I don’t want a bath, I had one yesterday” (which she didn’t), to “I just dropped the cup” as she looked down at her hand that hasn’t been able to hold a cup in over a month followed.
I made a quick trip to the alteration place to pick up our suits and then Simone and I headed out to visit with a couple funeral homes.
The first place we stopped at was a place that Simone and I had both been to a couple times throughout the years. They were very accommodating with their packages… Since Mazha is going to be cremated (with a portion of her ashes spread in the ocean which she loved - except the fear that a shark may attack, which in Gulf of Mexico is a high probability - and a portion spread on her fathers grave) there wasn’t a need for a limousine to transport us to a gravesite. “Is there a way we could use that cost and roll it into a nicer urn, or more flowers?” “We could do that… or do either of you have kids in high school?” Do I look like I’m old enough to have a kid in high school? “Um… no. Why do you ask?” “Well, if you did, we could transfer the use of the limo to a prom or some other event. Anyone getting married soon?” Actually, yes. My niece is. “Marilyn, I do have to ask one question, and I hope this doesn’t seem rude… but please tell me the name of your funeral home isn’t plastered of the back window or along side the limo. Using it in a wedding would just seem, oh, I don’t know… a little tacky.” Thankfully, it wasn’t. So, it’s something to think about. We walked around and looked at the staterooms and the chapel. They all seemed okay, but Simone wasn’t happy with it. When we got in the car she asked me if I had looked at the ceiling of the chapel. “Paul, there was mold. Seriously, mold. How could you not see it?” “If we ask them to keep the lights down low, maybe no one could tell. We could ask the priest just to tell everyone to keep praying so their heads are constantly looking at the floor and not the ceiling.”
GRADE; Pricing = B, Package Choices = A+, Staff = A, Facilities = M (for mold)
The second place we went to was impressive. As we walked through the door, we were greeted with our own personal choir of angels, shipped directly from heaven. Roman columns adorned the hallways and the sitting area was stocked with soft clouds to sit upon. Their pamphlets were created with hand-made paper etched in gold-leaf lettering. Robert greeted us and brought us to the office. He started asking us some general questions about mom, and then we realized that he’s not asking for their general intake form. He’s filling out the death certificate. He starts asking for personal information for Mazha and we said that we didn’t have some of it with us. I grab my blackberry and text Chris to call me in a couple minutes. Robert wanted to know who the ‘informant’ - key contact – was going to be. I let Simone take the reins (thanks sis). She gives him her contact info and the then the phone rings. “Excuse me a second” and I step outside the door, but left it open. “Did you have me call you to get you out of a meeting?” “Yes. Oh. I see. Okay. Tell her to give us tem minutes and well be on our way.” I head back into the room, “Robert, I’m sorry to have to rush this, but the doctor is there with our mom and she wants to meet with the family, so we’re going to have to wrap this up. Can you please go over the packages and show us, quickly, the facility and we’ll get back to you at another time.” Will you be coming back today?” “Probably not. Maybe tomorrow.”
He brought us into one of the other rooms with the urns and showed us the packages. Well, the lack of packages. “Here is our price list. This is the starting fee, and then all of the different components are listed here on this page. While you can use a rental coffin for the viewing (which most people who are being cremated do, since there is an insert that the body lays in and everything else is just ornamental), you can buy one. Here’s that price list. We recommend that you buy one (and of course he did, for an additional $6,000), and we have a great selection to choose from. Now let me show you the rooms.” The staterooms were all gorgeous, as well was the chapel with stain glass windows. Simone whispered that while it would take some major convincing, this is where Jordan should get married. I agreed. As we headed outside Simone asked if someone really called me or if I made my phone ring. “No, someone really called me.” “Does the doctor really want to see us right now?”No, that guy was just to high pressured and he was getting on my nerves. You owe me for saving us back there! And by the way, you now have to tell him we’re not using him because he has your cell phone number.” I get a look, followed by, "You ass!"
GRADE; Pricing = C-, Package Choices = D, Staff = F, Facilities = A+
The third and final place that we went to today is next to Simones office. We where greeted by an older man and I told him we had an appointment with Ben. Ben was downstairs (hopefully not embalming someone) and would be with us shortly. I ran to the bathroom since the large sweet-tea that I had about an hour earlier had started to kick in. When I got out, Simone said that she was told this was a great day to be viewing the facility… since the pricing are going up after today. [Great! We’re going to get another hard sells pitch]. That right there put me in a defensive mood. We get in the urn room and Ben goes over the list, in detail. Okay? Where is the hidden cost? We start asking some questions… it’s all included. “Let me itemize it for you so you can see what’s built in.” He pulls out and does the math wrong [Ahah! I say to myself. Here comes the kicker… ] Oh. He’s off only by hundred dollars so he recalculates. Okay… the pricing is good, but how are the facilities? He shows us the staterooms. Nice. Very nice. Simone and I both comment on room number 3. We don’t get our personal angels playing the harp, but the area for the viewing is more than acceptable. We headed to the chapel, and with fingers crossed, I pray for no mold or asbestos. Nothing of the sort. Very nice chapel and it’s glassed in, so if Kensi starts getting loud, someone can take her out, but still see the services.
GRADE; Pricing = A+ Package Choices = A, Staff = B, Facilities = B+ (If we would have seen this place before the second place, it would have been an A, but come on… they had floating clouds and one of those drive-up window tubes that the banks have that shoot the soul directly to heaven.)
When we got back to hospital, Dr. Ferguson did want to speak to the family since this was her last day at this facility for a couple weeks as she was on rotation. She has such a convivial and calming voice. We knew what she was going to say, and would have preferred for the room to remain silent. She told us that she had such high hopes for Mazha when she first saw her two weeks ago, but the disease has rapidly progressed. She said it is most likely that Mazha would pass from an infection/pneumonia because of the way her body is functioning. Her fever isn’t going down and she has water in her lungs. While they’re going to try to dry it up, there isn’t much more that they could do. They would ensure that she wasn’t in pain and that she’s comfortable. Dr. Ferguson was fighting back her own tears. She told us that while she wasn’t going to be here at the facility, she was going to be in town and would only be a phone call away. While she’s only that phone call away, she has been as comforting to this family as you have been.


  

Wednesday, February 17, 2010

[tap, tap, tap] Is this thing on?

Dear Lois,

Today started off as sad day. Chris, Kensington and I arrived about 8:30 this morning. When we walked in the door, a new volunteer was stationed at the door. We were greeted with alarm. The questions of ‘who are you?’ and ‘where do you think you going?’ were barked in request. While I understand she was just doing her duties, I wanted to inform her that for the past 10 days no one has questioned our intentions and her role at the door was to be a greeter, not a member of the Hospice Gestapo [sorry, just had to get that off of my chest. Plus, I know I’m hypersensitive right now, so I apologize to you, Mrs. Volunteer] As we passed Mazha’s room, Chris asked me where I was headed. I told him that I wanted to check on something… as I got to the door a moment of sorrow hit me. Fredrick was no longer with us. He had passed away during the night. I haven’t seen many visitors in there with him. My fear is that he passed away alone like so many people here do.

Today Mazha had a couple good spells. She looked to be more alert and started kidding with Chris, saying that he was her favorite. She ‘played’ with Kensington for a bit, and clearly recognized everyone that was in the room. It actually made me question (and hope) whether or not Dr. Ferguson could be wrong. Until later we found out that she has started to go into renal failure. Her fever, which has been steadily at 99.3-99.6, has spiked to over 100.

Tonight was the first night that we actually used the family kitchen for what it was intended to be used for, instead of just our coffee depot. The entire group of us, minus Mazha of course, took control of the facility and started telling stories and jokes to help release some of our pain. You could hear us throughout the center. At first I thought we were irritating the nursing staff, but we found out that they actually enjoyed listening to us and they started laughing as well. They said they don’t hear much laughter in the hallways here, so our dinner conversation was actually uplifting for them.


[Papa and Kensi taking a nap with Lois]



Tuesday, February 16, 2010

Inbound Flight

Dear Lois,

Today was a good day for Mazha, compared to some of the other ones. She was a little more alert than normal and was trying to talk a little. She’s still in a lot of pain and the nurses have tried to alternate her medication a little (hopefully it will make her more aware during the day and sleep better at night).

Chris arrived tonight, though only by the grace of God. Due to weather patterns and airplane malfunctions, he had a couple canceled flights and spent the better part of his time in the airport trying to locate a flight that he could get on. He ended up taking a bus from one airport to Philadelphia, and then was able to get a flight to Dallas. The first thing he did when he finally walked in the door around 9:30 was wake-up chickpea to her the biggest bear hug ever.


Kensi calls it quits on trying to stay up to see daddy. She crawled to the pillow, rolled over, and crashed.


        

Monday, February 15, 2010

Empty Vessel

Dear Lois,

My bud Frederick in room 104 is still here, unfortunately the woman in 103 and the one in 107 didn’t make it through the night. It seems like the occupants on this wing are departing quickly. Which leads me into the conversation I had with Dr. Ferguson this morning.

After coming back in to check on Mazha after the weekend, she asked me if I could step outside of the room… so with Kensington in tow, we stepped into the hallway.

“I want to apologize if I gave you any false hopes last week when I said that I thought she had short months left. It was very hard for me to give an answer with only seeing your mother for two days… she is showing signs that she’s reaching her final days. I would be very surprised if she is still here in a week. Her lucidness is quickly fading. If there is anyone that would like to see her and spend time with her, it really should be done in the next three days… after that, she’s not going to know, or fully comprehend, them being here. I’m so sorry. If you would like, I could talk to your mom, and apologize. I just couldn’t tell how fast this disease was progressing without seeing her, and her patterns over a span of time. She has increased respiratory congestion and she’s starting to have fluid buildup in lungs, as well as a decrease in urine output. I want to reduce the amount of food we’re giving her, because her stomach is elongated, and I want to work on adjusting her pain meds. [holding back tears] I know this hurts. I know you’re trying to stay strong… but it’s okay to feel pain. Again. I am so sorry.”

It took everything in me to pick up the phone and relay the information to Chris. He’s now making arrangements to be here tomorrow. I called Simone and told her the same. Aunt Paulette arrived and I gave her the news… the hardest was telling dad. We all knew that this day would come, and prolonging it seems selfish, if not on our end, on Mazha’s. This isn’t the woman we know and love. While there are brief moments of her being alert and talking (which gives us hope that she will be here longer), the majority of the day she is an empty vessel plugged into a ventilator.


   

Saturday, February 13, 2010

Dear Lois,
Unplanned and completely unexplained, I drove through your hometown today. A town that I can’t recall ever being in. If I was ever there before, it certainly wasn’t in the last 15 years. (For those of you up north – or across the globe - this is what us Texans would call a ‘one horse town’, with less than two-square miles of a land, and six hundred or so people calling this place home). When I realized I was here, I had to pull over to the side of the road just to catch my bearings and wonder if there was a purpose for me being here. There was no reason for the GPS to bring me here. I was headed to Marc’s father’s funeral in Mabank, about 60 miles from Tyler… a town that I had been to (or at least through) several times in the last couple of years when heading to visit with friends. I checked the GPS unit, expanding the map to see where my ‘point a’ and ‘point b’ locations were. Looking at the overview, it should have never brought me to your home. It was out of the way by 20 miles. Right now with my faith distraught, I don’t know if I should look at this as a sign or a coincidence, or a signal that there is a spiritual presence in the afterlife, whether or not a higher power exist.


Whether a deity exists or not, it made me feel like I will have the opportunity to be in contact with Mazha again after she passes… or at least have those moments that make me remember her and think of the good times that we’ve shared.

While headed to the funeral, I needed to stop to use the restroom. I ended up finding a mini mart type gas station and went inside. To get to the bathrooms, you had to go behind the counter (with the cash register), through a doorway, down a small hall and in the back of the storage area. As I headed out, I heard someone screaming, “Help me… Lord, Help me!” Holy crap, the place is being robbed. I run back into the bathroom and lock the door. Just my luck - I left my phone in the truck, along with my wallet. I didn’t want to bring either of these into the funeral home because the wallet makes my butt look big in slacks and the phone I was afraid would ring in the middle of the service. What do I do?!?! With my ear placed against the dingy door, I heard, “I can’t believe it. Oh Jesus, thank you!” Ummm… normally when someone is getting robbed, you don’t hear him or her say thank you. I unlock the door and creep out slowing, still willing to run back into the small bathroom and hide in the cabinet under the sink. It ended up one of the customers won a hundred dollar scratch off ticket. Yes, only a hundred dollars. I risked almost pissing myself (and possibly worse) on a hundred dollar scratch-off. I would understand if it was the Power Ball or something. Maybe even getting excited over a grand, but 100? Hey… it makes a great story, right?

When I came back I picked up munchkin from Simones and headed back up to Hospice. We visited for a couple hours and then I went back to the house where I hand washed you… or at least the pieces we’ve dirtied.

Anyway, today Lois, you’ve made me think. Think long and hard about the road ahead. It’s not going to be an easy one, I know. But I’m starting to brace myself.

Friday, February 12, 2010

Every breath I take...

Dear Lois,
Sleeping at home, or trying to sleep at home, was the best decision. I would have made it miserable for Mazha if I were there with her. Because of my throat, I didn’t get any sleep last night. That’s not being dramatic (what’s to follow is).

Because of the ‘snowstorm’, the TV kept going out every 90 seconds. I decided by 9:30 that I would just call it a night and try to catch up on my sleep. I quickly realized that it was going to be an extremely long night, and catching up on any rest wasn’t going to be done. My throat closed up… well, there was a small gap for air to come through, but that was about it. I couldn’t swallow. [If needed, you can skip this part… it’s kind of gross] It seemed like every time I was about to drift into sweet bliss, the salvia would build up and I would have to swallow. It would cause so much pain it would take another 10-15 minutes to get me to that resting place again. And then the same thing would occur. I started to have night sweats, so I would kick you off me… but would get the chills so I’d reach for you on the floor and cover up again. I got up and went to the kitchen to grab a cup. I thought if I could spit instead of try to swallow, I wouldn’t be in the same amount of pain. No luck. I was getting tired to reaching to the nightstand so I placed the cup in between two pillows on the bed. Every time I would reach for the cup, I would hit the headboard (which would hit the wall), and it would wake Kensington up. I would go to comfort her, which would only be about 30 seconds, and then start that process all over.

Around 2 am I decided that if I got a towel and placed it on the pillow and positioned my head just right, I could drool the salvia out. That only made my lips tickle. I tried this for about an hour or so, and then I contemplated on whether or not I should take a sleeping pill. The fear rushed in me. “I’m going to fall asleep and die by choking on my own slobber.” I decided not to take a pill. I folded you up and placed you on the nightstand and tried to sleep where my head was on you, my body was laying diagonal across the bed, and my mouth was positioned over the floor. This lasted all of two minutes before I gave up. Stupid idea. I then tried sitting up in the bed. I placed three pillows against the headboard and thought if I was positioned just right, my drool would go directly down my throat and there wouldn’t be a need for any muscle involvement. Because of being over exhausted, my mind started playing games. What if this wasn’t a viral infection? What if this was a symptom of ALS? I mean, Mazha is going through the same pain right now that I am. There are three types of the disease, one of them being called ‘familial’ (inherited). Simone and I have discussed getting tested, but we have to find out if Mazha’s genes have a SOD1 defect. If it does, then we should get tested to see of we have the same defect. If it is defected, it could lead to a 5-10% chance of being dx with ALS. Familial ALS is a small percentage of the ALS cases.

I decided to get up and go into the living room next to the hospital bed to see if I could find the suction that MDA gave us so I could use it. Then I realized I had no clue how to use the suction or what I would need to plug it into. I know the one in the hospital is connected to her vent… there is a portable vent here as well, but that would wake up Kensi if I turned it on – in the living room or the bedroom. So I decided it was back to drawing board… well, more like back to spitting in a cup. I did this until 6:30 when Fazha called and said there wasn’t a need to come to the hospital as early as I had planned. “What… why? Did something happen?” He told me to look out the window. Snow. A lot of it. Well, a lot of it for the state of Texas. “Good. I’ll try to be up there by 9:30 – 10”. Kensington got up so I feed her and wheeled her playpen into the living room. I went to turn on ‘Yo Gabba Gabba’ and the TV was still out. All of her toys were either at Hospice or at Simones. Looks like we were both SOL. No Tv. No Toys. No papa willing to hold her constantly. She decided to cry. As did I. [this is where I failed at parenthood] I went back into the bedroom and with one pillow under my head, placed two pillows over my head to drown out her whaling and went to sleep. Yes. I actually was able to go to sleep for a whole 2 hours. When I woke up, Kensington was asleep, so I got dressed and went outside to clean off the car.

When I arrived at Hospice, Fazha was waiting outside to help me with Kensi, the diaper bag, duffle bag, and you. Fazha said that she just work up and had a burst of energy. Her color came back, her eyes were wide open and she was talking up a storm – in a way that he could actually understand her instead of trying to read her lips and try to make out what she was trying to say. I thought this was great news… but when I got into the room, her eyes were rolled in the back of her head, her color was gone, and she was out for the majority of the day. When she did wake up, it took all three of us (Fazha, Paulette and myself) to try to make out what she was saying.

Fazha refused to go home, so I wrapped Mazha’s legs with you before I left and headed back to the house. Chris has been missing his little girl so much that I finally installed Skype so they could talk before it was time for Kensi to go to bed. I'm sure over the next couple of days, we'll be doing this a lot :)