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

Sunday, December 18, 2016

Thirteen Months

I reserve the right to keep the grief time period in months until two years just as a lot of people do with their children. I can't believe it's been over a year. So far, I'd say this year has been harder than last.

However, I am about to call on the enabling power of the atonement in my hopes of changing that. I may not be able to change my circumstances, but I can change myself in my circumstances. Yet again, I'm going to reinvent this blog and try to focus on what I am doing to "Get Up and Marshall On" just as my son's shirt read today. He wrote the saddest song just begging for his daddy to come back on Christmas day after visiting with Santa yesterday.

I've had a few powerful talks with my Uncle Sam. No really people, not the government (who I may add I am still mad at for not allowing Marshall to try a second round of t-cell therapy in a more timely manner), but I have a real, true uncle Sam. I also have a brother who was named after that uncle Sam, so my son also has a real-life uncle Sam. I remember the first powerful talk was when I was 16. I was so mad at my parents on a fourth of July that I was ready to run from home and attempt  living a life alone already. Gratefully, during that talk I ended up sitting on an ant hill. To this day, I remember the red ants crawling all over my leg and biting me at will as if to say, "Wake up!". I've recalled that talk many times through many experiences.

The second talk happened today at a good 'ole McKee family Christmas party. Sam reminded me just how many strengths I have. I've fallen into a bit of a grief rut lately where I've felt like the powerful impact Marshall and I had through his fight and cancer experimental therapies were enough. Like caring for, researching, and ultimately experiencing the death of my partner were enough! Why do I have to keep going when he was finished? Can I just tap out now? No! Sam reminded me that the difference I can make with what I've been through at just 31 is phenomenal. That the experiences I've received through it all can set me on a course for making even more of a difference in this messed up world.

Sam said he always thought I would be a doctor or a scientist or a researcher. He asked if the cancer route was too painful now? I didn't know how to answer these questions. I just told him that when a friend asked me what I enjoyed or what I would like to do, I remember staring at them like a deer in headlights. It's been so long since I have thought about what I enjoy because for years I was taking care of someone else and now I am taking care of Kez.  My life was pretty swallowed up in the researcher, caregiver, scientist roll.

So today, in order to get up and Marshall on- I am starting a strengths finder book he left for me. I'm going to find my strengths and the things I ENJOY and head in that direction. I'm going to "go confidently in the direction of my dreams and LIVE THE LIFE I've imagined". That's what Marshall would want me to do- to continue making a difference with every breath I'm given.

Tuesday, December 13, 2016

Oh My Son

This Christmas season has been difficult for our little family. Last year may have been the first Christmas we celebrated without Marshall, but this year we really feel it. Last year since he had just died, there were so many people buoying us up and wanting to do something especially for my son. Also, I had just experienced one of the most spiritual experiences of my life that was also holding me up as the life I had dreamed and planned for was crumbling around me. I was able to hold up my son and he was exuberant that his daddy had just graduated with angel powers.

Now, it's been a whole year. I've read that it takes about one year for a child to truly mourn and my son is no exception. My heart breaks as Kez wakes up in the morning crying and saying how much he misses his daddy laying next to him on the bed or playing with him in the next room. A couple days ago he suddenly said, "Mom, I wish that this was all a dream- that my life was all a dream." "What do you mean?" I asked. He clarified, "I wish daddy dying was all a dream. That we could just wake up and he would be here again with us". All I could say was "me too" and hold him and cry with him.

Sorry to be the gloomy one during the holidays, but I have so much more compassion for those who struggle during these festive times. "We must see others as they are seen through their parent's eyes. Through God's eyes". I used to shrug off gloomy people and go along my merry way. Back when Christmas wasn't just one BIG, FAT reminder of who we miss and who we've lost. Marshall was such a huge light in the world and to all he knew at any time- not just Christmas when people try harder to shine their light. This year, I mostly just want to huddle in my dark corner until it's all over. I hope I will have the desire to embrace light again soon. That light was so, so bright after my experiences with Marshall and family and friends coming together for him that now my son and myself are feeling the difficulties and struggles of trying to get through daily without our father and husband. 

Now I understand why the holidays are so hard for some people. We will get through it. "It is always bigger than life when someone dies. People seem to idealize the deceased in a way that seems unrealistic". Sometimes I feel I will never be worthy of the exaltation that has been afforded to Marshall after living such a purposeful and meaningful life even if it was short. In that short time, he reached out to help so many and even his own death helped others in their fight to overcome physical and spiritual darkness. He loved life and light and exuded life and light. "Some of the most significant things have been done from hospital bed or jail cells." If Marshall were here today I can imagine him saying, "Do what you can from wherever you are today!" It's so overwhelming to think back on what we went through all of my son's life. Through the hardest and most far-reaching and impactful times of Marshall's life- he did life and especially the dark moments with brilliance. I received the sweetest letter from an amazing man in our former stake presidency reminding me that Marshall chose to marry me for a reason. That we "are cut out of the same cloth" and "those who face difficult challenges show the rest of us how to endure with patience, waiting upon the Lord and accepting of his love in our darkest times". My gift to Marshall this year is a promise that I will get up and Marshall on. As difficult as it is every day to raise his son without him, we can do this. There are many others going through even darker times in the world and our hearts go out to them. I don't think I'll ever be able to focus on the 'stuff', the 'gifts', the commercial aspects of this season again. I will focus on the people, the memories, the light of the world. "Lay not up for yourselves treasures upon the earth where moth and rust doth corrupt, and where thieves break through and steal. But lay up for yourselves treasures in heaven, ...For where your treasure is there will your heart be also".

As we were buying some gifts in the store the other day, a complete stranger turned to me after listening to Kez talk for a few minutes and said, "He sounds like he's twenty". I was proud and sad in the same moment; my genius of a son who scored a 60 on the test most kindergarteners get about a 27 on has had to bear so much already and has been forced to grow up so quickly in his short 5 years of life. His whole life his dad fought for his own life and then to lose his own father at just 4 years old...I cannot imagine that- how would I have handled that? He handles it with so much grace and sophistication that he must be an old soul. How did the Lord handle watching his son go through so much pain? I truly wish I could take all Kezman's sorrows away from him, but then who would he be without the sorrow? Probably not a 5 year old boy who sounds 20 in a store. Again I am reminded that "we seem to be more concerned with how things turn out while God is concerned with how WE turn out".

In the same breath that I curse the Lord and the world for taking Marshall away from my son, I'm thankful for the broader life and world perspectives we've been given. While some people complain of this little thing or that, what appreciation we have been given for every breath. What Marshall wouldn't give to have 15 more minutes of life being stuck behind that train or just 1 more hour with his wife and son. I think of the song he wrote about living "another man's dream". He made every day he woke up his dream come true even through his sufferings. My hope is that I can be better at embracing the glowing embers that remain from his well-lived life instead of the ashes that I seem to be trying to paint something out of lately. For my son, I hope to be better at making this season a little more magical and a little less painful.