The pain isn't constant, there are good days and even weeks. There are also bad weeks, and days and things can change by the moment and the hour, and it’s painful to watch. It’s emotionally draining to roller coaster with someone in this way, to bare the weight of her disease with her, and be strong for her always. Never able to have a moment of weakness, never allowing her to see faithlessness, never allowing the Enemy a moment to sneak into my marriage and turn her already fragile heart away from God.
Sometimes this hyper-attentiveness doesn't allow God the space to touch her heart and remind her of who He is. He’s not only the Healer, He’s also the Comforter, the Counselor, Lover of her Soul and mine. My strength in care for her makes me fall behind in other areas.
Sometimes it’s hard not to look at friends and family who don't deal with the struggle of chronic illness, and wish for their life; to wish for a win every once in a while. It’s hard not to be angry with them, and consider scenarios where these people are confronted with the amazing gift they have in their health. It would feel so good to show people how good they have it when they whine about getting the flu or having to go to the doctor for the first time in years. To speak up when they complain about insurance and the price of medications, this self-righteous argument over healthcare and politics by people who aren't sick and never get sick, and whats “fair.” As an ER Nurse, I see this with my patients as well as the people I love.
Deep inside I feel this hurricane of anger and hate and bitterness roiling and growing and increasing in strength, while this overwhelming love and gratitude for this beautiful woman, the most perfect thing God has ever created, soothes the rage in me. Deep inside I feel this thankful wind blow. This cooling breeze that calms the storm in me and renews my soul and mind. I am humbled constantly by a Holy God, that in His amazing love and mercy, He would show me how faithful He is, and how extremely and perfectly He loves me and my incredible wife. How He reveals His loving and giving nature by creating this perfect being and giving her to me. I see how easily and significantly He fulfills her needs as a Father, and lover, and caregiver. I see Him being everything I am not and the reason for everything I am. I see Him romancing her in His ever pursuing love, and His never-ending faithfulness.
My life is far from perfect. It’s harder than I could have ever imagined. Too hard, sometimes. So hard I don't know how I can go on any more. The tears I’ve shed for her and for us, the life she wants so desperately that we just can’t have. But I wouldn't trade her for anyone. She is my heart’s one and only, the one my soul loves, and I commit my heart and life to her only every day until I die, and not a second before.
Yes, times can be tough. Yes, we have occasionally wondered if it wouldn’t have been better if God had seen fit to not give us life at all. But here’s where He shows His wisdom and understanding: we laugh, and smile, and appreciate every beautiful sunset. We steal kisses when it rains but the sun is out, or when it isn’t. We dance with our precious, innocent, trusting sons who protect and care for their mother as selflessly as I wish I could on my best day. We dance with each other. We hold hands, and enjoy the mountains we live in. I rest my left hand on her right hip as she sleeps, it makes us feel safe. We dream, and wonder, and cry, and sing, and make-believe. Our future is brighter because of the person the Father gave us to hold tightly to, and I will be forever thankful to Him for loving me enough to give me to her, and her to me.
Being married to my wife has made this outdoor-enthusiast, minimalist mountaineer, ER Nurse, and future flight medic into a hopeless romantic; a softy. And I love who I am with her.
Yes, things are hard. But I wouldn’t trade her. No, not for a second; not a moment on our worst days. Things will always be okay as long as we have each other and plenty of snacks.