Texas T

No, not “Texas Tea”, as in oil, but Texas T as in Thanksgiving. This year’s Lone Star Rally included a special surprise for our family – Thanksgiving. As we experienced the rally and honored Mazha while we were in Galveston, we also took the opportunity to celebrate being together as a family at the beginning of November.

The past three years of the rally have been interesting. Three years ago we got a blizzard in PA that canceled Halloween and almost postponed our trip to Texas, last year we had hurricane Sandy that did postpone Halloween and impeded our travel (shortened our stay to just the weekend), and this year there was, what seemed to have been, a hurricane in the Gulf of Mexico. Okay, maybe not that bad, but enough where we were home-bound for a day with the TV sirens going off. No worries... we ended up playing 6 hours of dominoes and watching the water rise outside of our window. We called it bonding.

With our usual activities taking place on The Strand, Kensington also experienced her first haunted house at the old Mayfield Manor, the former home of Dr. Horace Mayfield, once a respected doctor, upcoming community leader, and son of a prominent physician in Galveston. It’s an 1867 building that served as a morgue after the 1900 Storm – still the deadliest storm in U.S. history having killed an estimated 8,000 Galveston residents. When we entered, Chris told them not to hold back. She insisted that she go through it and loves the thrill of being scared and while we tried to warn her, she’s didn’t want to be babied. So we went through (with a flashlight) and she laughed most of the way through it. When we were done, she wanted to go through it again. It wasn’t worth the admission for the first trip, and we we’re going to even attempt it a second time.

Click here for a photo slideshow

Kensi loved the fact that our beach house was 50 yards away from the ocean. Within a minute, her little feet could be hitting the sand. Besides swimming, burying her feet in the mud and chasing after seagulls, she loved flying her kite with Fazha. Unfortunately, after about 2 minutes of piloting the craft solo, she let go of the string and the kite went soaring up in the air. I tried chasing it and stepping on the spool, even running through the brush and dunes to catch it. I had no luck. There was a huge gust of wind that carried it away. When all hope was lost, I found the spool that went over some power lines and found that the kite had actually landed on the deck of a vacation home. While I shimmied my way up the deck the best that I could, there was no way that I could get it. Cousin Chase also tried working his magic so K-Grace could have her “shark-attack” kite back. Then Daddy came to the rescue when he drove the truck up to the deck and I was able to climb on the rooftop of the cab and un-snag the sails.

We also made our annual trip on the ferry to feed the seagulls. With Chris, Simone and Jordan off at the spa, a group of us (loaves of bread in tow) stepped onto the ship and noticed that K’s throwing skills greatly improved over last year. Mighty impressive. Watch out Dorothy “Dottie” Kamenshek, this girl may actually beat your record.

CLICK HERE

A Year Of Mourning

Dear Lois,

Over the past twelve months, I have become more in-tune to my spiritual beliefs – that is to say, I didn’t become religious or spiritual in light of the recent misfortunes in our lives, but I have reconnected with by base beliefs. Being the only one in our family that wasn’t christened in the Catholic faith (long story…), I’ve been a so-called member of many of the Christian denominations out there. Baptized Southern Baptist at the age of 9, I stayed in that faith until my early teens, then switched between the Lutheran and the Methodist churched until I was about 15. Then when I entered a four year relationship with, what would become my fiancé, my high school/early-college sweet-heart, I dabbled in the LDS (Mormon) religion. Since meeting Chris, I’ve gone to two reformed protestant churches; the Episcopal Church and the United Church of Christ.

Since then, I have exposed myself to one of the original faiths, Judaism. Judaism, with its long history of dealing with the soul of man, its intimate knowledge of man's achievements and foibles, his grandeur and his weakness, has wisely devised a system of graduated mourning periods. During this time, the mourner may express his or her grief and release, with calculated regularity, the built-up tensions caused by bereavement.

The Jewish religion provides a beautifully structured approach to mourning which is divided into five stages. Aninut, Lamentation, Shivah, Sheloshim and a Year of Mourning.

The fifth stage is the twelve-month period during which things return to normal, and business once again becomes routine, but the inner feelings of the mourner are still wounded by the rupture of relationship with the loved one.

The observance that most affects the daily life of the mourner during the twelve-month period is the complete abstention from parties and festivities, both public and private. Participation in these gatherings is simply not consonant with the depression and contrition that the mourner experiences.



This was not meant to look like a shrine,
I just moved the candles
closer for the picture.



It borders on the absurd for the mourner to dance gleefully while his parent lies dead in a fresh grave (or in our case, separated into several boxes and thrown in the ocean, hanging from a necklace, buried with her father, sitting on a shelf, and in my house, hanging out in a Japanese Urn on the liquor cabinet - exactly where she would have wanted to be).

At the close of this last stage, the bereaved is not expected to continue his mourning. So with that being said, No More Sadness. Period. [I so wish it was as easy as typing the words and the actions will follow. Unfortunately, it's not. I don't know how one can expect it to go away.]

While today is a day to remember Mazha’s life that passed away a year ago today, it’s also time to celebrate the new life that came into the world today. Kensi’s uncle Kyle and Auntie Cathy had a baby girl today - Kayla. While I have pictures of her in the hospital nursery, I’ll ‘allow’ the newbie parents to post the first photos of their princess before I do so. I will also let them share the story of Cathy falling asleep during labor (that woman falls asleep at the drop of the hat), and how what she desired the most was to have her eye lashes curled (if people were going to take pictures, she wanted to look flawless). It’s not my place to tell that story, or share with you the uncomfortable conversation I witnessed where Kyle stood in the hallway with his mother-in-law discussing her daughter’s cervix. It’s just not my place. Sorry folks :)

In honor of Mazha’s life, I wanted to share the video that we played at her funeral. It had to be split up into two videos because of YouTubes time limit on video uploads.

Part 1



Part 2

Post 9/11 Foundation Ride For Heroes

The ‘Follow The Flag” campaign began at Ground Zero on September 11, 2010 with the raising of several flags by the actual heroes of 9/11 over the fallen World Trade Center Towers. The same flags have flown over several battlefields in Iraq and Afghanistan and all of the major military academies. These flags will be on tour of across the country from one year, returning to its final resting place at the National 9/11 Museum on the 10 year anniversary of the attack.

Fazha (with Mazha in tow), along with cousins Billy & Marla (their bikes can be seen below), followed the flags and the NAVY New Orleans Full Steam Brass Band, from the beach, through The Strand and down to Pier 21.

Looking for sand dollars

This past November, we traveled down to Galveston to take part in the 2010 Lone Star Bike Rally. Not only was this a chance to get the family together, but it was time to have the third memorial for Mazha and to spread her ashes in the Gulf.

The riding around the Lone Star motorcycle rally is one of the attractions. Going over the Causeway that gets you over the water to Galveston Island lets you see the water, riding along the beach once on the island, and riding on Strand Street through the middle of the rally are all part of the Galveston TX motorcycle experience. Fazha built a special holder that allowed for her urn to sit, one last time, in their trike, Dragon’s Breath, so she could experience these things one last time.

Here are a couple of the pages from a scrapbook that I put together from our trip.

Kensington loved walking the beach, which was right off from where our hotel was stationed, looking for sand dollars and seashells. Her auntie Simone and cousin Jordan were the lucky ones, finding prized possessions on the beach. I wasn't so lucky :(

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

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"

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.

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.

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.

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.


  

[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]

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.

        

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 :)

Let it snow, let it snow, let it snow...

Dear Lois,

Mazha was sedated all day. I think it’s the patch that they placed on her. From 9am-7:30pm, she was probably up only about 2 hours total.

After arriving at Hospice this morning with Kensington, I quickly realized that I needed to get some medical assistance for myself. Throughout the night, I found it not only difficult to swallow, but to breathe as well. I left munchkin with Fazha and headed to the emergency clinic to go get checked out. They ran a Streptococcal pharyngitis (Strep throat) test and it came up negative. The doctor said it’s just a viral infection. I’m hoping Kensington doesn’t get sick. She has a habit for ‘sharing’ her pacifier with her daddy and me. She’s not really a paci-child. During the night she’ll use it and when we travel in the car (or plane), we give her one. [Funny Story - At her first day in Toddler One, I didn’t take the pacifier out of her mouth when I brought her into the daycare. When I put her down in the room, all of the kids came running to her. Surrounded by OPM (other peoples munchkins), she took her pacifier out of her mouth and went to hand it to Peyton. “Chickpea don’t do that. Cooties.” Then I realized what I just said. I just told all of these kids that Peyton had Cooties. I tried to back-peddle. “Don’t share YOUR cooties” Great. Now I just told all of the kids that SHE has cooties. Thank God they’re too young to fully comprehend what I was saying.] Anyway, the doc said there wasn’t much he could do for the pain in my throat. He prescribed a Z pack for me, but told me to wait 48 hours before I take it. He’s reasons are unknown, and my throat hurt too much to even ask him.

The gentleman in room 105 passed away today. He was the husband of one of the Anatomy&Physiology teachers at the local college. They brought him in the night before and he only lasted here a couple hours. It looks like God is working backwards. First room 106, now room 105. Mazha’s in room 102, so hopefully we will be getting several more days of her being around.

I had to go into town to buy a suit… the one thing I didn’t pack for this trip. When I was packing, something told me that if I didn’t prepare for a funeral, I wouldn’t have to attend one. Unfortunately, our friend Marc (from the Marc&Dean duo) lost his father yesterday to a silent heart attack. Chris called me early this morning to let me know. I know the services will be soon and since I’m down here, I feel like I must go. I don’t know how I’m going to do it, emotionally, I mean. We’ll see.

Before I left, I covered Mazha up with you. You spent the majority of the day on the floor, again. Kensi had another tea party with Fazha. More counting with her moo-moo cow, and tearing apart Legos. They don't get Nick Jr in the room, but we make due with the Cartoon Network in the background. It's better than The Beverely Hillbillies that Fazha keeps putting on. I think Auntie Paulette and I (Along with Mazha) have suffered countless hours to that show, along with Gun Smoke and Ponderossa.

Tonight it’s snowing here in Texas. We (they) don’t get that a lot down here. I headed back to Mazha and Fazha’s house to sleep here again. I was planning on staying at Hospice, but because of my throat, I think it’s best if I try to get some rest tonight.

Words that consume

Mazha is American Royalty

Dear Lois,


Not a lot happened today. Dr. Ferguson came in again to check on her. This is a once-a-day occurrence. Here it is just symptom management, so there isn’t a need for more than the nurses that are right outside the door. Because of the pain Mazha was in throughout the night, Ferguson wanted to put her on a pain-patch, something that releases the medication on a timer so she can be ahead of the pain, instead of playing catch-up and having to wait the 20-30 minutes for it to kick in.

Fazha has barely left her side. I made him go home last night to get a good nights rest. He’s constantly rubbing her legs, brushing her hair, massaging her hands, and every once-in-awhile pressing against one of her tubes… in which she mouths the word ‘asshole’ to get him to move. She says that he’s spoiling her. Earlier today, one of the nurses even commented on how good he’s treating her, I jest with a “Oh, it wasn’t always this way. Trust me!” Mazha chuckled… then choked. It’s a dry choke. No noise escapes her. Her eyes just tighten up and her lips tremble. You can just see the suffering running through her.

Around noon, there was a knock at the door. They were delivering a FedEx package from my cousin Debra. Her church group and her put a wonderful care-package together; lotions, wooly socks, inspirational quotes & books, along with numerous cards and words of encouragement. Also inside were two sachets of herbs, one lavender and the other eucalyptus. I laid the lavender one on her pillow and she was able to squeak out a smile. The scent filled the room and made it a more calming resting place.

Since my time here, I’ve been trying to joke around with Mazha. She’ll try to tell me where it hurts and I will say, “Yes, I know that Barack Obama is the best president we’ve ever had.” A grunt would follow. One of the nurses would come in and say to her, "Wow… you have lovely brown eyes" (and they’re looking better… on the first day they were bloodshot and glassed over). I followed up with, “Do you know you have American Royalty here? She’s Hillary Rodham-Clintons second cousin. You better be good to her or I’ll have this place shut down.” Mazha tries to flip me off, to no avail. When the doctor came in yesterday and Mazha asked how long she had, I told her that if she’d vote Democrat in 2012, the staff would do everything in their power to keep her alive. She shook her head no and mouthed, “Take me now.”

After Ferguson put her on the patch, she pretty much slept throughout the day. The Chaplain came in once when Auntie Paulette and the nurses where in (Mazha was having issues breathing and started to have a panic attack). He stayed for a couple minutes and said they he was here when we needed him. I don’t trust him though. Kensington was sleeping, in a pink outfit covered with a pink blanket, and he asked if I had a girl or a boy?!?! “A little girl”. “Oh, that’s nice. I raised three of them.” I guess he’s colorblind. That's always a good thing for a man of faith :)

We also had a visit from the pet therapy dogs. They were cute, but Mazha was out cold. We’ve learned to treasure our time when she’s not in pain.

Kensington and I made a fort out of you and one of the reclining chairs. She’s starting to take up more space in here than Mazha is. Toys spread out everywhere. Straws placed all around the floor (don't ask... she loves straws). Her little feeding chair that she now crawls to and puts the tray on it to let us know she’s hungry or wants a snack. For about thirty minutes, Kensi and Fazha had a tea party on you. With her Fisher-Price Laugh & Learn Say Please Tea Set, she’d pour the tea, stir the cup haphazardly, and pretend to drink it. She’d then try to stir Fazha’s tea as well. It was a great moment… I wish I would have caught it on film but the nurses have me petrified to leave any personal items out. On the first night, I left my wallet on the sink and was scorned by one of the nurses. “I’m not saying anyone here would take it, but I wouldn’t chance it. Lock all of your personal items up.” So my camera and wallet is at the bottom of a duffel bag that is hidden behind the cot. If they can get through the fort, over the table and chair and behind the cot without someone catching them, then the items are all theirs!

Mazha’s feeding tube keeps getting clogged. Whether it’s the food, the crushed pills, or the liquid medicine that is gelling with everything, the nurses kept coming in to try to clear it.

I ended up going home about 7:30-8pm. My throat is starting to kill me. Hope I didn’t catch something.

Lois, I found out a couple things about you today… you were a seamstress for 15 years. I wonder if you made this quilt. I assumed you did, and knowing that you had a passion for sewing, it makes sense. The amount of detail that when in to creating my comfort is superb. I took you home last night, once again. You’re a little tattered around a couple of the edges… I’m sure it’s because this masterpiece has wrapped you in love in your own time of need. You lived to be 77… had four daughters, eight grandchildren and 11 great-grandchildren. Oh, the things you can find out with today’s technology. Having such a large family, I can see why you’ve brought me my own sense of reassurance. I’m sure you had to be a strong matriarch with so many children grappling for your attention.

Well, Lois, tonight is another night. Thank you in advance for your touch. It’s like being held by a foster-grammy.

Unspoken Words

Dear Lois,

Last night another church here in East Texas was burned down. This makes the tenth church on the past month. On the way to get breakfast before I headed up to the Hospice center, I passed by one of the churches that was torched last week. It doesn’t make any sense. Right now, in this phase of my life, I’m mad at God. I’m mad at life. I’m mad at the horrible disease Amyotrophic Lateral Sclerosis and the fact that it takes its victims one piece at a time. I’m mad that Mazha will never see my little girl grow up and jealous that Simone had that opportunity. While I have this anger in me, I would never demolish the faith that others have. I wouldn’t take their feelings of peace and comfort away from them. Watching the news, I saw one of the local pastors recite 2 Corinthians. "We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed.” I envy him - for someone who has gone through such heartache to have so much optimism. For me… I am crushed. I am in despair. I feel abandoned and destroyed.

Walking up and down the halls of the center, it’s nothing but silence. You pass people and you glance at them, you may nod, but you don’t say anything. No 'hello.' No 'hi.' No 'how are you?' All cordial greetings. You know how they’re doing. The same as you are. You see them in the kitchen or the soda shop and again, a nod. You see them on a couch in the hallway. Exhausted. Worn out. Emotionally shattered. They look up and again, it’s a nod as you’re biting your lower lip. This says, “I know. I’m sorry.” When they see Kensington trotting down the hallway, they finally smile. An older couple stopped me in the playroom today and they wanted to hug her. Her mother was in here and she said she needed some brightness in her day before she left in so much pain. It tore me up inside.

Dr. Ferguson came in to check on Mazha. She moves her lips to talk, but we can only make out every other word, if we’re lucky. I’ve started to hold her hand and ask her to squeeze it when I get to the letter of the word she’s trying to say, and then I go through the alphabet. I finally figured out what she was asking.

“How long do I have?” Again, I feel crushed, in despair, abandoned and destroyed.

“Do you mean in here? Or do you mean in general?”

“General”

“Short months”

“Short months?”

“It could be a month. It could be two. It’s not going to be a year, or even six months. It will be short months. But that is going to depend on you. If you give up, it will be sooner. If you fight, it will be longer. But I will tell you what… I’ve only seen you for two days and you haven’t given me much to go on. Why don’t you ask me in two weeks and I can give you a better answer. You’re going to have good days and you’re going to have bad days. Don’t focus on the bad days. Don’t take things one day at a time. Focus on a five-day span. You mave have a bad day or two, but focus on trying to have a good day at the end of that time. Or focus on the good day that you just had. I have bad days… I sleep in late, I call in sick to work, I move slower than normal. I know it’s a bad day, but I don’t let ruin my entire outlook. I focus on what I’m going to do in the days ahead.”

She was then given some additional meds through her feeding tube to help with the pain. She quickly feel asleep. I later found out that Dr. Ferguson lost her grandfather to ALS, so she has taken a special interest to mom because of her diagnosis. “This is the fastest progression of the disease that I’ve ever seen or heard of. I hope I didn’t lie to her when I said short months… but she doesn’t look good." And she doesn’t.

In the early afternoon, I bring Kensington back to Simone’s house. I ran to McDonalds to grab dinner for Fazha and Me. When I entered through the front door, a young man, about my age, was sitting on the floor. I’ve seen him since Sunday. We’ve both wandered into the kitchen in the wee hours of the night in our PJ’s to get something to drink and in the early morning hours to get coffee. It seemed like we were on the same time schedule. Again, each time we’d just nod. It was the unspoken words that we all shared in common. He was on the phone holding back his tears. I overheard him say that ‘she passed twenty minutes ago’. As I turned the corner to go into Mazha’s room, I can see the entire family, and what looked to be the entire congregation of their church, standing in the hallway. One-by-one they were going into room 106 to say their goodbyes. She was finally at peace, with so many left behind in pain. It’s funny… one of the churches I passed on the way back here (we call it Church Boulevard because you have 15 churches in a two mile stretch, and a total of 200+ in town), had the following on their marquee. “Heaven: No Tears. No Pain. No Death” and yet, in one room tonight, all three were present.

I stayed the night on the cot, again, you kept reassuring me that everything would be okay. The sweet smell that was vacating you, comforted me. Mazha tossed and turned all night. She was in so much pain. Even though the wonderful nurses would come in every two hours, it seemed like every other hour I was standing at the nurse’s station asking for something else. Help moving her. Help adding pillows under her. More muscle relaxers. More pain meds. I didn’t, and haven’t, cared how I’ve looked. Tonight was my UVA shorts, slogan t-shirt and socks. Hair in a hot mess. Unshaven for the past week. They’ve seen it all before, I’m sure. Every time I would come out, they’ve gone to get another nurse or nursing assistant to read my shirt: Fiscally Republican, Socially Democrat, Sexually Liberal. One of them gave me a high-five. Something I wasn’t expecting, or desired, at 3am. I would have changed it, but the only other thing I had was covered in cheese ravioli from a little chickpea who wanted to share her lunch with me.

The room has been set to freezing, by Mazha’s request. Around 5am, she said her legs were cold, but she still wanted the fan on and the temperature at stay set at the level it was at. So I shared you with her. I wrapped you around her legs hoping you would give her the same compassion as you’ve given me.

Lois, who were you? How did you pass? Why did you choose me? Us? I don’t know these answers, yet, but I can only say thank you.

Sweet Numbness

Dear Lois,

Kensington and I arrived in Dallas late Sunday night and headed straight to Hospice, where Mazha was admitted on Saturday morning. A lot has happened over the past couple of weeks. On Monday, January 25th, Mazha went into the hospital due to breathing problems, as well as problems eating. They told her that her only option was to go home, call 9-1-1, and come in through the emergency room. Otherwise, it would be hours before they would be able to help her. They brought her home and did that, even though transporting her in the vehicle caused so much pain. After being admitted, they ran numerous tests and early on Tuesday, they preformed a tracheotomy and inserted a feeding tube in her. She stayed in the hospital through the weekend and was breathing fine on the trach/vent and was taking the liquid food quite well via the feeding tube. We called the local Muscular Dystrophy Association and were able to secure a hospital bed, feeding tube pump, IV, and vent with bipap as well as several ‘meals’ that she could take through the tube. Once she got home, she started regaining her energy and finally started to fight the disease. When we’d call, I could hear her talking past the trach and she even talked about wanting to make a trip up north during the summer to see us. She had this type of strength for a couple days and then started having breathing problems on Thursday. They brought her back to the hospital, where they were told they could do no more for her. On Friday night, Dad and Simone got her admitted into Hospice as she's needing 24 hour care and it's something that they can't do on their own, and a home health aid is not going to be able to assist because she's on a breathing machine. In order for her to be able to be admitted, she needed to sign a DNR order… something that she said from the very beginning that she wouldn’t do. Once she fully understood that Hospice would be able to manage her pain, allow us to stay with her 24/7, and provide the care that only a doctor would be able to give her and that the DNR was only stating that if her heart stopped, they wouldn’t resuscitate her, did she decided to sign it.

Kensi and I decided to head down there now (originally, we were coming down at the end of the month to visit) for the next couple of weeks - to either be with her to help her get better or to make the final arrangements needed. Before we left, which was delayed because of the potential winter storm the east coast was going to get, I spoke to the nurse at Hospice just to get an update. They stopped feeding her since she arrived because she was vomiting, which was occurring the last two days she was at home. They had sedated her through the night and were waiting for her to wake up. The plan was to start feeing her again on Sunday and it will go two ways: 1) she take to the food and regain her strength and she will be back to the way she was prior to being admitted, or 2) she won't take to the food and this will be the end.

When we arrived Mazha’s room was filled with the Hospice staff, along with Simone, dad, Auntie Paulette, Jordan and her fiancé Chase. Mazha was up and semi-alert because of the medication that where injecting through the tube. I had braced myself for the trach, but didn’t realize the number of tubes that she would have coming out of her. She smiled the moment she heard Kensington. Looking around the room, you could see numerous pictures of Kensi taped to the walls so no matter which way she was looking, she could always see her. She took a moment to touch with Kensi’s feet and gruelingly wave towards her a couple times.

About a half an hour after we arrived, you could tell that the entire day spent traveling was taking a toll on Kensington. Simone and the girls decided to take her to their house so I could stay the night with Mazha. I tried to get Fazha to go home to get some rest, since no one had slept in days, but he refused to leave her side. He went outside to the linen closest and brought me a thin sheet and a thick sheet for the cot. He tried to convince me that the thick sheet was a blanket. I wasn’t buying it.

When we first entered the Hospice center, I noticed a door that was labeled “Clean Linens”, so I decided to try my luck to see if I could snag something, anything, which was going to help provide me some warmth. When I opened the door, there were numerous shelves with sterile whites; sheets, pillowcases, towels, and blankets. Off to the side, I noticed several quilts and afghans so I grabbed the thickest one… the one located on the very bottom of the pile. There you were. White and green with a starburst pattern. Throughout the night, in the cold, freezing room, you kept me warm. It was more than being wrapped in warmth… it was about being wrapped in love. You allowed my hand to burrow through so I could hold her hand all night. The sound of the breathing machine working going off every 8 seconds and the light of the full moon coming in the window barred me from getting any sleep. The nurses, coming in every two hours to relieve Mazha from her pain would creep in, turn the lights on and go to work. I would sit up and try to assist whenever I could, but through the night I felt helpless. All night she ached. More pain meds through the feeding tube. Around 5 am, they came in to flip her on her side to help relieve some soreness. At 5:45 they came in to clean the room (are you freak’n kidding me), and at 6 Marla came to visit before she headed to work. Dad stayed asleep, on his makeshift bed on a reclining chair and a visitor’s chair. Marla stayed about thirty minutes and when she left, I tried to get some sleep. You were there, on the cot, telling me everything was going to be okay. You didn’t smell like the sheet below me…that was hygienically clean. Bleach. You smelled like Japanese cherry blossoms. A fragrance that Mazha often smelled like. For the next three hours there was peace. I heard one of the nurses open the door, but she quickly shut it. I was able to shut my eyes and sleep. Forget my surroundings. Feel your embrace. I finally felt the ‘sweet numbness’ that I had heard about.

At 9:30 when another nurse came in, we realized that it was time to start the day. I had to go to Simone’s to pick up my little chickpea and return to Hospice so we could spend our time with Mazha. After I put the cot away, I went to fold you and that’s when I saw your name. In the corner of the quilt, “In Memory of Lois…” was penned. Well, Lois, thank you for the rest, thank you for your gentle embrace, thank you for your healing touch. I’m sure we’ll be in contact soon.

Video Message To Mazha

Mazha went into the hospital earlier this week for a tracheotomy and insertion of a feeding tube. Both proceedures went off without a hitch and she's recovering quite well. She should be returning home in a couple days. This should help her with her breathing issues and assit in regaining some of her strength.

Fazha, Auntie Simone, and cousins Roni and Jordan have been in the hospital with her since Monday, so Kensi wanted to send a special video message to Mazha so she could be part of her "Get Well Crew".