Today my wife told me she loved me.
Although not sounding a least bit out of the ordinary there is trepidation in her voice for she is scared. Terrified at any moment somewhere within the vast towering marble and hardwood covered hallways of Stanford there awaits a doctor ready to give her some bad news. Something in the neighborhood of her counts being wrong, or she isn’t improving as well as anticipated. Every breath she takes is met with fret as she analyzes her inspiration and expiration for volume and consistency knowing she is but a cough, wheeze or low oxygen saturation number away from possibly being kidnapped back into the BMT wing. She is a prisoner on parole, hanging with old friends praying one of them isn’t holding drugs or carrying a weapon. Anything that could lead to a quick trip back too the pen.
Two nights ago her temperature shot up after a long day of doctors poking and prodding around her already frail body. Slowly it crept up 98.9, 99 then 100. When her temperature reached 100.4 alarm bells were sounded! Of course one cannot reach a temperature of 100.4 at 2 in the afternoon, that would be a simple problem to handle! No scary situations always happen in the middle of the night when no one, even the affected wants to get up and go anywhere! But time means nothing for you see at 100.4 if held consistently for an hour with two matching readings it’s time to call the BMT team immediately! If her temperature reaches 101, we notify the BMT team then load up our car for a one way trip back to the Stanford hotel! So to say my wife is constantly on edge is an understatement. Her nerves are definitely raw.
Every day she wakes up and consciously tries her hardest to put on a brave face! She started 26 months ago by telling Leukemia it wasn’t going to win, it wasn’t going to take her from her children! Now every morning she prays GvHD doesn’t have the last word! She is incredibly strong but with strength comes doubt! Every time she looks in the mirror at herself and sees what GvHD has done to her skin, body and hair she wonders what more could this horrible side effect of transplantation do to her already ravaged body? Each day she gets out of bed alone because I am 80 miles away at home and she wonders what we are doing, is her family ok, are her kids doing well in school, and how on earth am I handling it all by myself. This of course leaves her feeling a bit out of control in regards to her life which in turn leaves her feeling stressed and disconnected. Her whole life is on hold and she fears that it will never be the same, that she will never be the same which desperately leaves her longing for the days before Leukemia ruined everything. This becomes a cumulating effect that slowly tears away at her spirits leaving her often times depressed.
So she tells me she loves me again, not just because she does love me but because she also feels a little insecure about herself. Afraid of what this disease and its after affects can do to a relationship. There are plenty of stories out there, we have heard time and again where the husband/wife has left their spouse high and dry. Marriages of years are dissolved because two people are no longer on the same page. Time, distance and illness erasing years of love, honor and cherish! It is the saddest indication of our throwaway society transcending from disposable tangible objects to human characteristics. I cannot even fathom throwing away our marriage over this bump in the road. When I look in her eyes and see her smile I only see the woman I married many years ago, not the woman she claims to see every morning in the mirror.
Last night as I slept alongside her, humidifying oxygen machine loudly pumping in the background while sounds of her wheezing, gurgling and occasionally gasping for air filled the room. I wondered what she was dreaming about and if she was comfortable enough. I wondered how I could make this transition easier for her, whether there was something I could do or say to make things better, give her the confidence she needs to go another day away from her family, help her to see there is a light at the end of this very long tunnel while also reassuring her none of us are going anywhere. While I lay there worrying about everything, she slowly reaches out, hand searching desperately and when she finds my hip, she takes a deep breath, gives it a pat and is right back asleep with a slight smirk on her face.
I don’t need to do anything. I just need to be there. That is the answer.
I quietly whisper not to worry, I love you too….
Praying, my old friend….strength and healing. God bless you all.
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Thank you Denise. 😘
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Jacy loves you with all of her heart, and you love her, in return, with all of your heart. Nothing can come between you. Your mission is to keep both of your spirits high and hold onto your faith.
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Thank you Claire. ❤️
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I love what, how you write. I have gone through many ‘events’ with my husband (from separations to now illnesses). We have been married 39 years (this coming April) and to read what you write, to try to understand what you and Jacy are going through just amazes me! I am ashamed at times of how I treat my husband (he has nothing in illness like Jacy, but it has changed him permanently) and I want to do better. It is harder for us since we never had children and there were marital problems…wounds we need to heal more than just scab over, and envision the bigger picture. I returned to my faith a few years before my husband’s worst illness came on. We even got married in the Catholic church 6 months before his surgery that changed him forever. I need to keep reminding me that this was all in God’s plan, it is so obvious. Doesn’t mean it is easy, but I have to keep trying and every day ask God to forgive me when I am short of my ‘perfect caregiver wife’ self. I only know you through friends, but I think of you two, your family, often, and when I read your blog, I say a little prayer that she will come home to you soon. God bless you…you both are amazing!
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Thank you for the kind words and prayers. 39 years is amazing and there is a plan, though sometimes hard to see have faith, listen to your inner voice and find joy in the little moments. Hopefully they will erase the times you feel you or even he hasn’t been perfect. Marriage does take work and love will do the rest. 😃
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James…you and Jacy are both such an inspiration obviously to so very many of us. It is obvious that you love each other so very much and are very devoted to one another. I pray that both of you may find some respite from the worry and the fear. With all of our thoughts and prayers and love and caring surrounding both of you, I hope you might be able to take some comfort in all of the support. What an incredible devoted couple you are. May God bless you both for your steadfastness and courage and unyielding love for one another and may He surround you with his loving arms and grant you peace. This is my prayer.
Susan Joyce.
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Thank you Susan. 😃
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Just tears…..your love for each other is beautiful. Continued prayers, always
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Thank you. 😃
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When I read your posts, I remember your sweet family and the energetic boys at church and your wife’s infectious smile and laughter and then I pray….hard….again…in my war room, I cam calling on Jesus to heal her. Love to all of you.
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What a wonderful picture of her. I miss seeing you all… ♡ but especially her face, and that smile! Tell her I think of her so so often, raising my babies, as I always have admired the mother she is. What a woman. A gem. Love you guys. ♡
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