I had no idea on Thursday when we checked Matt into the hospital for a neutropenic fever that tonight I would bring my love home to die. Did Matt and I know he was terminal? Yes. Did we think we still had months together, hopefully a couple of years? Yes.
My heart is breaking over and over and over again. Just when I think I cannot shed another tear, another flood comes pouring out of me. When I look at his face, the face that has loved me through so much life these last 17 years I am overwhelmed. I can’t see a future without him in it. I can’t picture a night without him next to me. Do you know that in 17 years we have spent 4 nights apart? FOUR. Our lives are so woven together like a beautiful tapestry that I do not know where I begin and he ends.
So you are probably wondering what in the world happened? Well, yeah…me too. Matt’s kidneys have just decided to quit working. He started in renal insufficiency and by this morning he was in renal failure. It was so rapid and so unexpected. Initially his team of Physicians thought he would come out of it. However with each passing day, his kidneys functioned less. What this means is that his kidneys aren’t filtering out toxins and all of his medications are just hanging out in his bloodstream. This equals neurotoxicity and it’s absolutely gut wrenching. Last night I had to carry my husband to the shower and strip him down and bathe him. Every time he is in the hospital I am the one to change him, clean him up and bathe him and help go to the restroom. Through the years of me working in the medical field he would tell me “I would rather DIE than a nurse see me naked.” And friends he meant it. To carry my 37 year old husband to the bathroom, take his clothes off and bathe him is the most heart breaking thing I will ever do. My heart beats for this man and I would do it a thousand times over again, but seeing him this way is like no pain I can describe.
This morning his condition worsened literally hour to hour. Finally his oncologist called in the neurologist again and his assessment showed my worst fear….Matt’s kidneys are failing and there is nothing to do. The worst part is that it isn’t the cancer that is killing him, it is the chemo. The last treatment that I don’t think he even wanted to do. No, wait..I know he didn’t want to. He was physically ill going into it, he was dreading it so much. He did it for me. For his kids. Not because we asked him to, I have always told him I will support whatever choice he makes. I have never pressured him into getting more chemo. Chemo is a hell I would never encourage anyone to endure for more time. Especially not the man I love more than any other human. But he was so worried about me and his babies. He wasn’t afraid to die, he was afraid to leave us.
When his wonderful nurse Tina (Tina we LOVE YOU, ADORE YOU and you are stuck with me for LIFE sister, so sorry), came in and asked me about making my husband a DNR it was like a nightmare. I became enraged. How can God ask to me to sign my husband’s life away when He has already made me do it with our daughter? How God? How many of my people do I have to hand over to you willingly?? When does it end!?! Why? WHY MATT? He is so good. He is so wonderful. He is so precious. Why!? As I signed the paper I had to repeat to myself “this is what Matt asked Michelle, this is what Matt asked.” I cannot tell you how difficult it is to make the best decisions for your loves, when you just want them here with you. No matter the cost. Honoring Matt’s wishes is the hardest thing I have done yet. But I’ve said that before….
Two hours after I signed the DNR Matt had deteriorated even more. When the neurologist concluded it was “over” and time for “comfort measures” only I lost all control. This cannot be real. I can’t be here. I am not ready for this. NOT READY. I didn’t say good-bye. I didn’t know when he slipped away he would not come back. He has slipped away before and always come back. I didn’t know…..Lord please give me a minute. Something. Anything. Let me tell him how much I love him one more time. I didn’t know Friday morning when he asked me to cuddle him in his bed and Tina walked in a said that we were “SO DISGUSTING!!” that it was it. That I wouldn’t feel him hold me ever again. I didn’t know God to savor it. To cherish it because he was going to leave me soon. I didn’t know we would never see Alaska together as a family. That his dream would never come true. I didn’t know Lord.
It all happened so fast. So very fast. A flurry of activity and suddenly an ambulance is here and I’m riding home with tears pouring silently down my face staring out the window wondering how this is my life. How is this happening? Again? How Lord, HOW?! I am angry. So angry. Angry at the world. Angry at God. Angry at family who have been to scared to love us. Angry at friends who have been to scared to love us. Angry at this stupid disease that is stealing the love of my life away from me. Angry that there are so many horrible souls out there who deserve death and that this is somehow this wonderful mans fate. ANGRY. I hate you life. I hate you world. You are so cruel.
I cried buckets of tears over Matt in the ambulance. Buckets. I told him how much I love him and how we will be together soon. Not to fight for me or the kids, to just race home. Love on our babies in Heaven. Tell Isabella how much her mama loves her and cannot wait to kiss her sweet face. Please Jesus, let Isabella be the first face he sees. Oh the rejoicing that will happen for my love. The JOY. The LOVE. The PEACE. The suffering is almost over for my love. He will meet Jesus face to face soon and all of his pain will be gone. No more suffering. No more pain. No more tears. Before he lost consciousness I smiled at him crying and said “Heaven will be so sweet my love.” and he looked at me and smiled his sweet smile and said like a little boy who is excited “It sounds so nice. I’m so tired of being sick.” Oh my heart. Oh my heart.
Tonight we are home. When I told him in the ambulance that we were home he shed one tiny tear. Because he was happy, I know it. I have fought to honor him and give him everything he wanted. I have fought to keep his dignity intact, and only I take care of him. I change him, I clean him, I love him. Just like he wanted. Many times tonight I will kiss his lips and he responds and kisses me back. He no longer can tell me he loves me, but he responds in the way he can when I tell him. His babies gathered around him tonight and told Matt how much they love him. They are heartbroken and need your prayers. We all do. None of us know how we can possibly go on without him. I simply can’t picture my life without him in it. He completes me. And he always will.
I will leave you with a poem I read many years ago and wrote it in a letter to Matt one day in our early days because it captured just how I felt about him. It still rings true today, even more so.
i carry your heart with me
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is youhere is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart (i carry it in my heart)