She walked down the hallway to a thunderous applause. Smiles, cheers, and hugs were the benchmark set for the morning. As always she made it (strolling down the hallway) look effortless and few would know she was doing her very best to simply stay upright. She had made it, she had survived when many felt she wouldn’t. She outwitted, outlasted and outplayed what was initially supposed to be at the very most a 4 month stay. It was almost 8 months instead. She had become a survivor.
That lone walk one year ago down a Stanford hallway, headed towards an exit was five minutes of pure bliss.
Fast forward one year.
Today marks the one year anniversary of my wife walking unassisted through the hallways of Stanford Medical Center to an awaiting car. She came home on that day and sobbed uncontrollably upon crossing through our gate onto the ranch. Her eyes cast upon land she felt she would never see again. It was a miracle and my faith had grown stronger.
Over the last year;
We have been to the Emergency room more times than I can count and it hasn’t gotten any easier. Even though no matter what hospital or emergency room someone remembers Jacy and we are always treated like family. But each time her body dictates we head that direction it feels like a giant step backwards and of course the inevitable panic attack associated with walking through those doors ensues! Fear solidly grips her mind as the thought of never coming back out is always present.
She goes to Stanford every two weeks for three to four days of treatment for her GvHD. It is a struggle, it rips at the fabric that is our family and we are very blessed to have continued help through immediate family and friends. We knew this wasn’t going to be an easy journey but wow, what a journey it has become!
I have become well versed on all medications associated with GvHD (Graft versus Host Disease) their indications and contraindications and with this knowledge my professional skills have been sharpened; specifically in the arena of assisting, acknowledging, and caring for any patient who has or has had Leukemia or cancer.
Our faith has been tested. We are constantly wondering what the bigger picture is here, what the “big” plan is supposed to hold and if we will ever receive a clue as to what is the answer. We wait patiently, trying our very best to understand, crying together, praying together, wondering about what the future holds-together. We feel robbed, she feels robbed of a life that once was so active and brisk. We both feel admiration and jealously as we watch other families, couples and dear friends moving on with their lives, posting pictures of holiday weekends, trips to Disneyland, camping and nighttime outings. It brings about feelings of remorse over time wasted, projects never tackled, feelings never shared, opportunities missed. All while a clock tic-tocs away in our heads.
It is a lot of weight to carry, not knowing if you are going to live or die. Knowing inside you can still feel the strong powerful woman you once were trying her best to roar like a lioness while recognizing those memories are waning, fading away, replaced by memories of milestones like the time you walked unassisted from your bed to the bathroom without collapsing or were able to get dressed with no oxygen on in just under 15 minutes. You are struggling to make the most of every day while only having enough energy to be cognoscente for 5 hours or less. Sleep is the only thing you know. You quit staring out the window because you can no longer have what’s outside. Fear gripping you constantly as anxiety rips through your soul. The only cure is more medication and a television filled with trash TV to keep your brain occupied 24/7. It becomes the new normal.
It is a lot of weight to carry not knowing if my wife is going to live or die. I have worked hard at caring for her over this last year. I have always thought of myself as kind of a half ass husband, but I can say without a doubt, I have done my very best to care for this woman I love. Making sure she has what she needs when she needs it, being there to hold her when she cries, assist her when she walks, make sure her medications are on time and she has food to eat before she takes her pills. I have grown to let her do things even though I don’t think she is ready for it. It gives her drive and purpose and if she can’t complete whatever she is trying to do, I am right there, a step away to encourage her when it is all over. I miss date nights with her, laughing our asses off at a little hole in the wall we would frequent in Winters, drinking wine and beer. Her staring into my eyes our faces inches apart and that smile! Oh that lovely beautiful smile!
But what I have instead is a better understanding of what marriage truly is. We all say the words; in sickness and in health, till death do us part. But how many truly understand the meaning? Marriage is a journey. And much like any journey it begins in the comfort of a room, with hopes, dreams and well intentioned plans. You both start out on the journey together, with fanfare, family and friends all wishing you well and it all seems smooth in the beginning; but when the journey strays off course, life becomes hard, bitter, with at times both of you not following the same plan you begin to define your relationship, and as storms come and go you rebuild, alter course and travel onward. A solid bond between two people and a solid relationship will flourish and grow with continued love and understanding thereby creating a foundation of stone.
I feel our relationship has done nothing but grow, leaving that foundation of stone for our children to stand upon and hopefully flourish. So although it has been a difficult year, good has come from this giant hill we are climbing together.
I haven’t been writing a lot about Jacy lately because we are living in our new normal. But as we move into the New Year approximately two hours from now I thought we would start the year off with an update.
Jacy has been feeling very sick, she is exhausted all the time, and can barely get out of bed. She has oxygen on 24/7 as without it her saturations levels fall dangerously low. Our family just returned from three days at the coast with family. Jacy was able to get out one day for four hours. She sat on the beach and enjoyed the ocean air surrounded by her sisters. It was an amazing moment for her and our family! Once back at the house she slept (not by choice) pretty much the rest of the time.
We are waiting to hear from her doctors as to what our next step should be.
She is scared as she doesn’t feel right, which of course is a different “right” from whatever “right” really has become for someone as sick as she is on a daily basis. She just seems to stay weak instead of getting stronger and that isn’t good. She has asked that as we head into the New Year, if people could please take a moment and send some prayers her way she would appreciate it. As we have seen over this three year journey a little prayer power goes a long way.
As the year comes to a close, I want to personally say Thank You to each and every one of you who have assisted my family in any way. Without the love and support we have received this journey would have been unimaginable.
Thank you all, Happy New Year and may all of you be blessed with an outstanding 2017!