Marshall's music, t-cells, t-shirts and more

Tuesday, August 9, 2016

Red Sun

Tonight there was a sunset that made the sky red. Then there was a moon that looked orangish-yellow and was shaped like a banana. My sweet Kez took notice of both. He says when he sees his dad he is red and white. He sent the banana moon to make him laugh. I didn't get a picture of either, just gazed on quietly noticing the beauty tonight.  I just kept thinking, 'that reminds me of Marshall.' Kez also kept seeing shooting stars. There will be a big meteor shower soon. Events like this really make me miss Marshall. We spent many a night on top of a car looking at the sky. This is my first August without him in 6 years.

Lately I have been having a very difficult time coming to terms with the fact that Kezman won't have the most amazing dad he would have for the rest of his life. Marshall was definitely the better parent and I truly feel terribly for my young son. How in the world will I give him the attention and time he deserves while taking care of everything else too?

I told Kez I was missing Marshall through some tears today and he responded, "Mommy you need to listen. I see daddy's spirit mouth talking and you need to listen." I said "Kez, I can't hear anything". He said, "close your eyes and concentrate mom". This was so out of character for my jabber box son to suggest that I decided to try it. And I could hear him! The tones of his voice so melodic and familiar echoed in my ears for one sweet moment. It had been so long since I've heard it while he was alive now that I MISS IT SO! He always called me the sweetest things and I could hear that too. I really feel like Kez will be missing out on getting to know Marshall and having an incredible dad. It literally breaks my heart in two all over again every day. My dad and I are close and I have no idea how I would have grown up without him around. I devoured 2 books on the airplane trips this past week and they are books I would recommend to anyone who's lost a loved one. The Message by Lance Richardson and i knew their hearts by Jeff Olsen. One sentence really resonated with me, "I knew I had experienced something beyond death, but it didn't quench the pain of missing them". Although Kez seems to have more of these experiences than I do- it still doesn't help the intense pain of missing our Marshall.

I've read from some experienced widows that the second year is harder than the first. I am starting to see exactly why that could be true. Sometimes I wonder where my friends and family have gone now. Am I too independent? Am I acting like I'm fine too often? It's not fake; I really am trying to be strong and make the best of this life we have been dealt. I guess I am better at putting on a good face than I thought. Or maybe I am too much of a Debbie Downer in my grief and people don't know what to say or do. It's probably just that people are so busy in their own families and lives and seeing/hearing Kez and I brings back memories they don't want to recall. They may bring up emotions none of us want to deal with.

How could God take away the very most amazing thing he ever gave me and expect me to live on without it? I don't understand. I don't know what it is, but I feel somewhat like the Savior when he was so alone in the garden. Bearing moments of complete anguish, despair, sadness to the point of physical pain. That's the one place I can relate to in my mind. My friend Julie put it nicely when I told her how I felt one day. She said, "I have a theory about friends. That theory is that you are in the garden of Gethsemane, suffering untold agony that only you can understand. Your friends are outside the wall. They care. They want to help. But they don't understand and they can't stay awake. You are forsaken by people who don't know how to help and to avoid the discomfort, they fall asleep. It's a very lonely place for you. A normal conversation would be wonderful. Having friends engage without feeling sorry for you would be wonderful. But it won't happen. They don't know how. If they could think of what to say, they'd try, but they don't know what to say anymore. They will eventually return." Thank you for putting it so elegantly Julie.

When the Savior comes again he will be wearing robes of red. Kezman and I were able to go through a special tour of the new Philadelphia temple with some very special people. The trip was a bit healing and hard too. It was more healing than I thought it would be. Less hard than I thought it would be. (We were also able to tour the laboratory where the t-cells were made and stored. I'll talk about that in another post). The spirit was strong and the first thing I noticed was a picture of Christ in red robes. I really hope Kez is right when he talks about his 'red and white' dad and I pray that what Marshall can do for his son from that side of the veil can help him grow into the amazing man he is meant to be just like his amazing father.






Friday, July 22, 2016

Numerical and Lyrical Love

Ours was a numerical and lyrical love. I'm often reminded of Marshall when I see certain numbers and hear certain songs. I know it's super nerdy, but he let me continue to be my mathematical, quizzical, left-brained, logical self and numbers girl through our relationship.  It started on the very day we met, November 13th- or 11/13. My favorite number was 111 and his was 3 long before we ever met that day. So naturally, we got married on that same day 1 year later. He liked to tell people 'we got married the day we met' with no explanation which would definitely get some bug eyes and I was left to explain. I miss his punny jokes.

Here is an email he sent once just to give you an idea of our number nerdiness:

I love you sweetheart, and there is the math to prove it :)

Perfect totient number

In number theory, a perfect totient number is an integer that is equal to the sum of its iterated totients. That is, we apply the totient function to a number n, apply it again to the resulting totient, and so on, until the number 1 is reached, and add together the resulting sequence of numbers; if the sum equals n, then n is a perfect totient number. Or to put it algebraically, if

n = \sum_{i = 1}^{c + 1} \varphi^i(n),
where
\varphi^i(n)=\left\{\begin{matrix}\varphi(n)&\mbox{ if } i=1\\ \varphi(\varphi^{i-1}(n))&\mbox{ otherwise}\end{matrix}\right.
is the iterated totient function and c is the integer such that
\displaystyle\varphi^c(n)=2,
then n is a perfect totient number.
The first few perfect totient numbers are
3, 9, 15, 27, 39, 81, and 111
For example, start with 327. φ(327) = 216, φ(216) = 72, φ(72) = 24, φ(24) = 8, φ(8) = 4, φ(4) = 2, φ(2) = 1, and 216 + 72 + 24 + 8 + 4 + 2 + 1 = 327.

Multiples and powers of three

It can be observed that many perfect totient numbers are multiples of 3; in fact, 4375 is the smallest perfect totient number that is not divisible by 3. All powers of 3 are perfect totient numbers, as may be seen by induction using the fact that
\displaystyle\varphi(3^k) = \varphi(2\times 3^k) = 2\times 3^{k-1}.
And there you have it!
- Marshall 
PS.  Thank you wikipedia


Speaking of numbers, today is the 23rd. Marshall invented this other idea that we each had a day of the month that was our very own and it was the day of the month we were born. So every 11th was Kezman's day, every 23rd was mine, and finally every 30th was Marshall's. I just realized his funeral was on his day of the month, the 30th. On "our day" every month we got to do something special we wanted, have our favorite treat or whatever it was we chose. Those monthly celebrations got a bit more difficult as Marshall was often hospitalized the past 4 years, but they also became something different to look forward to in the dreary hospital walls no matter how small the thing was we chose. It just made each one of us feel special every month. So since today is MY day, I'm going to indulge a bit here since I don't have my man.

Speaking of feeling special, I TOTALLY miss him making me feel special. He often told me he thought the world and beyond of me and I just miss hearing those words. He was a talker and a verbal processor and I often thought, "man he talks a lot". Now I would give anything to just spend hours listening to him like I used to. His son is a lot like this though and rarely stops talking. I'm worried about him starting kindergarten this year and getting in trouble for talking.

The song Marshall proposed with has a verse that goes, "If I wrote you poetry and music, tried my best to sing. If I lived my life to serve and please you, bought a diamond ring. If I owned the world and all it's riches, I'd gladly give it up. But it wouldn't be enough. No it wouldn't be enough to say I love you because the words could not express what it's like to look into those lovely eyes and feel such tenderness. It wouldn't be enough to hold you closely at the end of every day and tell you that my day was long without you. I hope that you're ok. It wouldn't be enough- Amanda baby, but I'd do it anyway". He told me later that that was the first time he'd put a girl's actual name in a song he'd written. He wrote that only a month after he met me as a Christmas gift. I'd pick a song he wrote for me over a material gift any day of the week and twice on Sunday.  I objected because the song, "AJ" he wrote a week or two after he met me had my nickname in it. His lyrics often pierced my soul. I appreciate the meaning and depth behind his lyrics which are so different than some of the shallow and repetitive songs that are on the radio sometimes. He gave me his CD that was produced in Minnesota that first November 13th we met and I stayed up until early in the morning listening to every song and even texted him my favorite song numbers which ended up being 11 and 3 if I recall correctly. His lyrics still often pierce my soul. Like the part, "my day was long without you. I hope that you're ok". I want to tell him that nightly now.
You can purchase this CD or whichever song you choose including, "It Wouldn't Be Enough" mentioned earlier by clicking here on Marshall's ITUNES songs.
All proceeds go to Kezman's mission fund as Marshall had written down.

When I designed our wedding announcements, the border was with alphas and omegas since the symbols for them look like 'as' and 'ms' (we flipped the omega symbol on the border to look like an m). The 'beginnings' and the 'ends'. Why did his symbol have to stand for the ends anyway? Now that I think about that, maybe there was something more to that. I prefer sunrises and he preferred sunsets. I thought breakfast was the most important meal of the day while his "tummy just wasn't awake enough yet". If we were road tripping, I'd rather stay one more night and wake up early to drive home while he preferred driving home that night no matter how late it was.



Another part of the song says, "if I wrote you love notes every afternoon with lots of mushy stuff, no it wouldn't be enough". He really DID write me tons of love notes. I have boxes and journals full of them. The last love note he gave me was on 11/13, 5 days before he died and exactly 7 (full, complete) years after that first 11/13. That note was so sweet and he talked about paradisaical glory. Did he know? I don't know. But even more meaningful has been some poems I have found now that he's died that he never even told me about. Speaking of lovely eyes from the previous lyrics, I found this poem entitled, "Her Eyes":

"Her Eyes" was a poem he wrote and I have no idea when or why because the first time I'd seen it was after he died. Those eyes he wrote about bawled like a baby while reading the words. I mostly feel like these eyes are still in the middle of the rainstorm, just like the sky after he died in Pennsylvania on the 18th literally POURED rain like I've never seen before just as my eyes have poured more buckets of tears than I ever thought possible. I often was Marshall's editor and I had obviously never seen this poem because of the way he'd spelled chameleon and I love that there's a pond in the lyrics because of our son's middle name being Pond.

Like the sky after a rainstorm,
misty hues of sage and sea. 
Tell stories of an unknown rolling landscape, 
strangely familiar like a mysterious dream. 

Her chameleon eyes absorb the beauty of
her surroundings and reflects it ten fold, 
the mirror of a verdant mountain pond in spring. 
Clear and rippling from it's core to borders. 
Trimmed in lashes like arching pines bent backwards.

Revealing her glistening emerald surface, 
delicate like the wings of an exotic butterfly. 
Her stare reaches unknown depths, 
Neptune from the Sun.
I'm immersed. 
Descending a submarine surface
caught in her gaze 
like swirling clouds of an unknown planet



We loved to hike together and Marshall's favorite hike was White Pine Lake.





Speaking of swirling clouds, Marshall would often watch the sun set and the sun rise, but especially the set. I feel like there have been a few sunsets he sent just for me lately since I told him often he was my sunshine. One of them was on the 18th, the day of the month he died:
Sunset on the 18th. Photo Credit: Alan Kearsley
Please keep trying to glue my broken pieces back together with your golden sunsets Marshall.

Tuesday, July 12, 2016

Lullaby: Goodnight My Treasure



There are some days I don't know how I get through even with looking at pictures and videos of Marshall. Lately I have been finding a lot of pictures he took of us sleeping. Especially pictures of Kez asleep. I hope it means that now he watches over us as we sleep.

There was a beautiful song, a "lullaby" he wrote when he was young that I also found amidst his things. I remember him playing a recording of the song for me while we were dating, but I have yet to find the recording. I do remember the melody somehow from all those years ago, so I've been singing it to Kez at night sometimes. Here are the lyrics:

Goodnight My Treasure 
-lullaby for when I have kids (he wrote that on the side)

verse 1: 
Goodnight my treasure
Goodnight my special little one
May you awaken
to the light of the morning sun

verse 2:
Goodnight to starlight
Goodnight to the angelic moon
May peace be with you
May calm sweet slumber find you soon

chorus:
At night we kneel
to say our prayers
And we find peace
from worldly cares

Now rest your head
and close your eyes
And dream of
starlit summer skies

verse 3:
Goodnight my child 
Goodnight my special little friend
And while you're sleeping
Protecting angels heaven send



I hope Marshall truly is our protecting angel. I think I may have been more in a fog these last 7 (almost 8!!) months than I realized. I think I tried to run from and ignore my grief more than I'd like to admit, but the only way through it is THROUGH it as hard as it may be. Also I realized that I won't ever move on from him. He would be the first person in the world to encourage me to move FORWARD though. He probably was the most forward moving person I ever had the privilege to encounter. 

Now that we are closer to the 1 year mark than ever before, I have felt a heavy weight as though it's time to start making some big decisions when it comes to our family and what is best for us and especially for Kezman's future. I still don't trust myself to make a right decision for some reason though. It's like some other lyrics I listened to the other day that said, "I'm paralyzed without you". Of course it made me think right away of Marshall because of all the physical paralysis that happened to his face when the leukemia was in his spinal fluid. Marshall and I had a lot of plans and dreams post cancer that I don't know if I'll want to do without him. What's the point? Some moments I wonder why I care about anything without him. I know that's silly, but it's just how I've been feeling lately.
So if any of you have found yourself at a crossroad in life that you never intended and your life took you climbing up a cruel mountain that took away your most prized treasure, what did you do? How did you get through every day? I have a beautiful, bubbly smiling boy that gives me joy, but also reminds me so much of what I've lost that it's a heart-wrenching happiness.

One thing I may finally do to help me get through the days is take the advice of my grief group counselor and write some things on this blog. There were so many tender mercies that were granted to me at the time of Marshall's death and now I feel like my memory of them are fading so I need to write them down. Especially in a place where Kez can read them. As he gets older he is getting more interested in looking at the videos, pictures, and hearing the stories of his dad to keep his memory alive. How did we get here? Lost without our treasured father and husband. For now I'll keep singing Kez the lullaby with his angel dad protecting him. During Kez's prayer tonight he said, "Please bless that Heavenly Father can always be with us and that daddy can still take care of us". He still points out that Marshall's spirit is here and there sometimes.



Thursday, July 7, 2016

Marshall's Dream: The Contest

I meant to post this on June 27th because that's when he shared it 3 years ago (3 was his favorite number), but time slipped away.

The Contest

6/27/2013

Last night I dreamed a dream. The details of which are now obscure. What I do remember is this.

At the commencement of the dream I was amidst a contest. In front of me was something very desirable. The other contestants were standing in a line with me and they also had an object of great desire before them. The object itself was locked somehow – not necessarily by a key but by some puzzle or riddle. The object and the puzzle seemed to be different for each person. More desirable than the prize before me was to be the first one to crack the code – there was a glory in it. Over a loud speaker a voice was urging everyone to hurry, hurry and be the first – to win the race. 

Although I didn’t know what being the first would bring me I really wanted to win! It seemed I used all my mental capacities and physical skill to solve the puzzle or “open the box” before me. My efforts were fruitless and I began to despair.

Soon I noticed a commotion. One contestant had left their station and had began to walk down the line and “open other peoples boxes” – I wondered how one person could be so innovative as to know how to solve so many puzzles that nobody else could? I watched in amazement, and wondered why this individual hadn’t been announced the winner. It was then I realized that their box, their riddle, their dilemma had not been solved. 

Epiphany, I left my station and began to “open up boxes” for others with ease. Down the line I went and soon others began to do the same. The voice on the loudspeaker was shouting as if we had broken the rules and would be disqualified. It didn’t matter though, those who had been served were happy and those who served even happier. They had attained the object of desire, not alone but together and for eachother.


(Amanda now) This dream floors me now. I feel like many patients and doctors alike are trying still to 'crack the code' of the cure to leukemia. He put so much physical, mental, and emotional energy into being cured. Only to now have left his station, but not without helping others to be cured of their leukemia. I am sure that much of the stuff he went through and his eventual death has already saved others who were fighting for their lives. He cracked others' codes in a very real way through helping blinatumomab be FDA approved and helping the t-cell trial to help others. 

This last week I had many triggers that put me back in that place of grieving hardcore for the loss of my Marshall. A beautiful friend fighting for her life while battling leukemia, family of a friend losing a spouse, the Star Spangled Banner being played at church where I could just picture him standing and boldly singing, some words and reminders that hurt my heart, holiday, our wedding song coming on in a restaurant where I remember he ate spicy food until he cried, and being without him physically every.single.day. I just hope my broken heart can handle whatever is thrown at me next. I miss you Marshall.








Sunday, May 15, 2016

Widowed

Widow. There. I said it. It only took six months, but there it is. Staring me blankly in the face as I type this just as it is you while you are reading this. It didn't feel or sit right with me for a while. Maybe not even now. Probably because I felt Marshall so closely and had some of the most spiritual experiences of my life just after his death. I still feel him around at intervals and Kezman much more frequently than myself. One time at a museum and another time at kindergarten registration (may I add that these were both times I was really, really missing him), Kez has informed me that his daddy is with him "all the time mom. Come on mom, stop crying, I saw a white light and he was there and saw everything with me". I believe that Marshall will help his son from the other side of the veil. I need ALL the help I can get being a single mom.

I've been thinking of one of the things that impressed me the most about Marshall while I was dating him. He would often visit two elderly widows. I remember them well and can see their faces and hear their voices because of how often we would visit them. Sweet Lillybell and feisty Antoinette. They were not his family nor members of his church. Sometimes he would play his guitar for them or sometimes we would just sit and watch a Jazz game. I grew to love these women just like they loved Marshall because we spent a lot of time with them and it seemed like they weren't afraid of anything. I was reading an entry in Marshall's journal the other day and I caught the words, "she was the most beautiful woman I'd ever seen in that moment" on the next page and chuckled to myself thinking, "now which girl is he talking about?" He wrote about a lot of girls in his journal- he was a little girl crazy for a while and I was pretty much the opposite- good at pushing guys away, so I'm not sure how that all worked out :). Anyhow, the woman he was talking about was actually Lillybell- well into her eighties and curlers in her hair. It was something she'd said about worrying about the afterlife that caused Marshall to view her in that light in that moment.

Now that I am a widow I know how much that time meant to each of these women. How wonderful for someone to just come offer their company- no matter what it was they did. Being a widow is often a lonely place.  It's not because we don't have friends or we are not outgoing. It's partly because we are grieving and don't want others to see it. Also partly because the friends and family in our lives do not fit in our world like they once did without our spouse. We are in the process of reinventing our lives and where we should be to benefit ourselves, but mostly our children without their parent. That includes location, relationships, everything. Just imagine every relationship in your life, especially the people closest to you, all changing all at once. BAM! You're no longer married (by no choice of your own), all goals change at once, and most importantly the person you loved the most and spent almost all phone calls, texts, relationship-building efforts on is also suddenly gone. Your kid now only has you to depend on for all physical needs. The very purpose you have been on the front lines fighting for years and basing all decisions, even who to work for and how to provide the best care for the cause you were engulfed in 24/7 is now no more... 

Now, being a part of this 'widow group' that really no one wants to be a part of- I have met more people who I revere and feel like aren't afraid of anything. They are strong, independent, and inspiring because they have to be. There is no other choice in the life of a widow. All while missing the person you love the most, you're expected to figure out all the bills, the legal matters, taking care of a home, a car, and most importantly kids by yourself. You're now living a life that you had planned and that had been ok to do with someone else alone.  Don't get me wrong, I am sure that people on the other side of the veil are trying to do their part, but I'm also sure they are trying to inspire others to help as well. 

One way I feel that Marshall has blessed me from the other side has been a friendship with an apostle and his wife. I appreciate such a busy apostle taking some time to spend with me last week. It reminds me of the scripture James 1:27 "Pure religion and undefiled before God and the Father is this, To visit the fatherless and widows in their affliction, and to keep himself unspotted from the world". 

I think Marshall did a great job at keeping himself unspotted from the world the last years. I also think Marshall knew more about life and what would become of his life than he would tell anyone, including myself and his mother. In fact, he wrote those very words down, "What I won't share with my wife or mom is the idea that maybe God is just giving me a little extra time to be with them before he calls me to the other side...when it's your time, it's your time". 

I also remember while dating him having a very prominent experience one night. I had gone into his home and saw posted on the fridge, "deep water is what I'm wont to swim in". It was a quote from the prophet Joseph Smith. It left such a HUGE impression on me that I almost broke up with him that night. I knew that Marshall would be called to swim in deep, strenuous, thrashing waters in his life in that moment. Although I had no idea at the time what would be in those waters, the Lord had given me a premonition and I do not deny to this day that after knowing that, I chose to stay by Marshall's side. I chose it. I think it's because I had just returned home from serving for a year and a half in a foreign country learning a foreign language living a foreign life. Timing is everything right? So I remember deciding, "bring it- I got this with you whatever it may be!" I never in a million years thought that would mean a long cancer battle, three FDA clinical trials, and now being widowed. I think if I had seen the future (which oftentimes on this blog I have posted I wish I could have), I may have actually broken up with him that night. I'm glad I didn't see the future. As hard as things have been and are I am grateful for who they've made me and the faith I now have in the Savior and eternal life. No one can take my trials away (I've wished a time or two), but they also can't take away my testimony and experiences.