Balancing Relationships with your Chronic Illness Health

Love and Coma: Finding Blessings in the Unknown

On Wednesday, the husband and I started our Thanksgiving journey with a few bumps in the road. See  I was supposed to go to work on Wednesday; however, I woke up in excruciating pain and thought I could take some pain medication to relieve it. Nothing relieved it. So, instead, I called off and decided it would be best to work from home. Yet, the husband did not want to leave me alone due to my level of pain, and he had already made plans to go visit his great-grandmother with his mom and sister that afternoon. What better place to be when you’re in pain than the one place you would go if it got worse?  Plus, I really wanted to see great-grandma since the last time had been at our wedding and we had not heard a lot about what was going on. I popped another pain pill and hopped in the van.

Strength in the UnknownTo say it was an emotional afternoon would be an understatement.
The day was so surreal.
This is my husband’s family. I should not have this deep of an emotional reaction to what is happening, yet somehow I have developed a connection. That connection has led to making this circumstance of not knowing what is going to happen difficult to handle.  How do I approach it with my husband? Should we be talking about it more? Should we be visiting more frequently? What is my role in this situation? I just want to be there.

I have had such a hard time confronting loss given my experiences with my father and his family, so I do not handle illness of loved ones very easily in the first place. Even being in hospitals is difficult for me – you’d think being a spoonie I’d be used to hospitals by now! Nonetheless, watching someone who has loved the same woman for SEVENTY-THREE years stroke her head and plead with her to wake up, while holding out the strongest hope that she will in fact wake up, was the hardest part of the day. He knows no life without her. They have been through everything together. Every thing.

When I first met great-grandpa and great-grandma, I had only been dating my husband for a few months and had been invited to Florida for Thanksgiving (full circle, I guess). Almost instantly, I felt welcomed by both of them! Neither knew me but they somehow made me feel loved and welcomed into the family instantly, because that was just WHO they were as a couple – welcoming. As I got to learn more about them – mostly through stories – I learned how true my first impression truly was of them.
They have been married over seventy years and by the way great-grandpa adores great-grandma, you would swear they were still newlyweds. They worship each other – but still place God above everything. They have accepted many, many children and families into their home throughout their life together.  Including, as great-grandpa gladly shared: a young lady who’s family kicked her out because she was dating … a PROTESTANT!!!
He told me these stories not to boast or brag, but to share great-grandma’s legacy – their shared legacy of love, acceptance, and welcoming. A true Christian, married life. Something I hope my husband and I are able to embrace and embody throughout our married life together.

christian-marriage-and-love-quotesAs he stroked her hair, placed a rolled up washcloth in her hands (She always carries around a tissue in her hands, Great-grandpa told us), and gently spoke to her to tell her again that all of her children were that and waiting for her to wake up, I saw true love. I’ll admit I was envious at first. My eyes welled up, a tear or three may have fallen… but then I looked at my husband standing at the foot of the hospital bed near his great-grandpa and realized that I have that same true love! It is OUR responsibility to nurture it daily as his great-grandparents did.

small-stuffDon’t sweat the small stuff seems like such dated advice, but after my experience on Wednesday, it is the best advice for newly engaged or married couples I believe should be given … you know with my, two months of experience.  Seriously, though, we have NO IDEA how long we are given here, or how long our loved ones will be here with us. One minute you are enjoying a conversation – the next, you are making the decision whether your partner would have wanted to be resuscitated after flat-lining. These are not questions that crossed my mind before Wednesday, but opened up a whole new conversation that my husband and I have started to broach.

My favorite quote read over and over while preparing for our wedding

Especially us #spoonies, we are in and out of the hospital, visiting doctors offices constantly and surgeries may sometimes seem like a day at the office to us, but you have to think about the hard questions sometimes. Have that conversation with your spouse or partner or family now, because having to make that decision when emotions are heightened in the depths of the situation is a lot harder on him or her and is not fair. It is a few minutes of comfortableness, but honestly, will make you feel even closer in the end.

Have you had any conversations about end-of-life planning with your partner? Was it difficult? If not, do you plan to discuss this? When?



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