I am wife to one amazing man Jerry, sister to one very gracious woman, aunt to the 13 best nieces and nephews (including grands!) out there, and thrilled to be reconnected with our two "daughters of our heart!" Best of all, I am a child of the King. I don't always see myself as a princess, but my Dad is Creator, Sustainer, Lord and King. I was built to encourage and connect people - especially those affected by disability.
Slogging through Jell-o. That’s what riding my bike felt like earlier this week. I noticed my speed was reduced. I had to use a lower gear. I couldn’t ride as far. It was hard work.
I had missed a few days of riding. Did it really make that much difference?
It was breezy out. Was I having that much trouble riding into the wind?
I didn’t want to bike if this is going to be my new normal.
Today before riding again I thought, let me check my tires pressure. You guessed it; they were very low. I inflated both tires. Mounting my bike, I turned out of the driveway. I felt like I was flying. The gentle breeze brushing my face was a delight.
Nearing the end of our street, I had to change gears because pedaling was too easy. I rode farther than I have in weeks, and my speed was faster.
Riding, I reflected on this day—the Saturday between Good Friday and Easter. It is a sobering day for me as a Christian, and I know what happens tomorrow! I wonder if the disciples felt a little like I did earlier in the week. The air had gone out of their life.
Their joy was gone. Jesus was gone. Everything was different, harder, and more troubling. Was it really worth going on if the Jesus we followed was dead?
In the first century, this was a dark and hopeless day.
But hold on . . . don’t give up now.
Joy, Hope and Grace await.
Cross photo by eberhard grossgasteiger on Unsplash
Yesterday I had the privilege of being a guest on the radio show/podcast Hope for the Caregiver. In my conversation with host Peter Rosenberger, I recalled a scenario from our early years of marriage. I was scheduled to sing special music at our church’s evening service. I don’t remember what happened, but earlier in the week I injured my foot or ankle and was using a cane for support.
Thinking ahead, I wondered if I could switch weeks with someone else who did special music. I just didn’t want to walk up the steps to the stage using a cane. Without thinking it through, I shared this thought with my husband, the man who lives every day of his life with a visible disability. His response?
“Why is it ok for me to be in front or in public in my wheelchair, but not ok for you to be seen with your foot wrapped and walking with support?”
I don’t know if you have ever been asked a question like that. If you have, please tell me how you answered. Because I couldn’t come up with anything.
That was one of the first times I became aware of “caregiver pride.” I did not feel cheated that my husband had a disability. Subconsciously, my ego was fed by being the caregiver, the one who helped my husband overcome and shine. I enjoyed hearing comments from others about “how lucky” Jerry was to have me in his life. But now you want me to show the world (or at least the 200 people who attended) that I too have a weakness or vulnerability?
Even as I write and re-read those sentences, I cringe at the ugliness of sin behind them. I wish I could say that is the only time I understood my brokenness as revealed in caregiving, but it is not. Now twenty-five years in, I am quicker to catch that thought when it tries to rear its ugly head, but not always.
There are two strategies I’ve used to help me combat caregiver pride:
1) Honesty—with God, my husband, myself and one or two close friends. I need a safe place to come clean with how I am doing as a caregiver. I need to allow God to take the ugliness and replace it with His grace. When my husband uses the gifts, talents, and abilities endowed in him by our Creator God, I rejoice and remember it is God who equipped him, not me. I need to to share openly with a friend the struggle and invite them to pray for me.
2) Accountability—before God, my husband, myself and a friend. This sounds much like #1, but it goes a step further. Here I ask for help (the antithesis of caregiver pride) to keep the sin in check. I allow others to point out pride when they see it creeping back into my life. I let others love me even as they help me recalibrate my focus and attitude.
What about you? Have you found your role as a caregiver revealing something about yourself? I am not asking you to air your dirty laundry here, but is there a story or example you can share? We caregivers need one another and we need to know we are not alone.
On the heels of Valentine’s Day, may I ask, how was the romance?
We went to dinner at a restaurant new to us, but not fancy schmancy. We had great food and good conversation. Apparently, we made a good choice to eat early, as the line was out the door with people wanting to get in as we left. After dinner, we walked across the parking lot for a leisurely stroll through Hobby Lobby. Jerry mentioned he hoped I wasn’t disappointed that this was not romantic enough.
I told him to stop right there. Romance, in my humble opinion, is very individualized to the couple. If we had reservations for dinner and dancing, I would feel uncomfortable as I am not a dancer. If we went to a 5-star restaurant where the waiter puts the napkin on my lap, I’d be nervous and giggling all evening. What we did was perfect for us, our budget, and the pace of life. And best of all, he took the time and initiative to make the plan. Now that’s romantic!
To me, romance means we spend time together that is meaningful to us as a couple. It may revolve around a holiday, or it may be around a table playing a game. It might be taking a walk around the neighborhood in the evening as we hold hands and enjoy the sunset. Sometimes it is a quiet evening of reading.
I learned about the book from an author interview on the radio. Part of the appeal for me was this is one of the first, if not the first book written on the Song of Songs by a woman. I told Jerry about it and we have been reading it the last couple of weeks. Our first read-through was each on our own. Now, we want to reread it together.
The author writes with an engaging sitting across the table from you, voice that draws one in. She treats this unique book in God’s Word with great respect and research and helps us understand what the strange language of that culture means. Sharon Jaynes also shares a bounty of tips to help you improve and grow in your marriage, both in day-to-day interactions and in times of intimacy. Jerry and I are each finding ways to improve our communication, romance, and marriage. We are sure you will too. If you’ve read the book, or get it to read now I’d love to hear your thoughts.
What does romance look like in your relationship (G rated comments only please)?
I’m tired, I’m worn. These words by Tenth Avenue North in their song, “I’m Worn” could be the mantra of every caregiver. The song continues, “a heart that is heavy; worn from the work it takes to keep on breathing, your soul feels crushed by the weight of this world.”
Do you wonder if the struggle of therapy appointments, equipment that needs repair, insurance pre-authorizations, specialists being far away, personal care attendants not showing up, or IEPs will ever end?
Not all of us feel this way, or at least not all the time. When these feelings strike me, I try to remind myself that there is a day when the struggle will end. When our hearts that are frail and torn can be reborn. Until that day I need to remember I am not alone in caring for my husband. God cares more for each of us than we could ever care for one another.
Let’s look at a few ways that God is our caregiver:
He gives us rest – Mt 11:28-30 28 Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. 29 Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. 30 For my yoke is easy to bear, and the burden I give you is light.”
Jesus invites me to 1) Come to him 2) Work in unison with him (that’s the yoke part) and 3) Learn from him.
He sent the Holy Spirit to be our comforter and counselor – to live within us and empower us. John 14:16
Jesus is our advocate- those of us in the disability world understand advocacy. The Bible says Jesus is our advocate when we sin– how’s that for getting the best? I John 2:1
Alpha Omega – He is our bookends, He was there in the beginning and created us. He’ll be with us in the end. And He sustains us through every breath in between. He NEVER leaves us alone. Rev 22:13
He’s preparing a place for us – that’s pretty cool. Have you ever felt like you just don’t belong here? To some degree we all have. That’s because this world is not our home. Here on earth, we may only get glimpses of the rest that we will enter into in Heaven. John 14:1-4
Can you imagine a better Caregiver for you or your spouse? Won’t you join me in taking His counsel from Matthew 11:29 and let Him teach us how to walk in the rhythm of rest.
Starry-eyed couples in love often think their marriage will be unlike any before or since. Soon we learn similar patterns occur and we need the counsel of others. Read some of of the advice we received here, and share your own.
Anyone who has a child or spouse with a disability has experienced days/weeks/months which are hard. Many times there is no option but to gut through it.
Other times, by forfeiting the most basic of self-care – sleep, eat, breathe I may make some unwise or unhealthy decisions. The biblical story of Esau and Jacob found in Genesis 25:29-34 brought this point home to me.
29 Once when Jacob was cooking some stew, Esau came in from the open country, famished.30 He said to Jacob, “Quick, let me have some of that red stew! I’m famished!” (That is why he was also called Edom.)
31 Jacob replied, “First sell me your birthright.”
32 “Look, I am about to die,” Esau said. “What good is the birthright to me?”
33 But Jacob said, “Swear to me first.” So he swore an oath to him, selling his birthright to Jacob.
34 Then Jacob gave Esau some bread and some lentil stew. He ate and drank, and then got up and left.
So Esau despised his birthright.
Esau spent the day hunting. He returned home and was famished. I’ve been there, have you? I spend the day running errands, managing appointments, taking care of the house and everyone else except me And I become hangry. Watch out!
By allowing himself to get past the point of hunger, Esau made a rash decision. He traded
his birthright (his role as the eldest brother and future inheritance) for a bowl of stew. At the time it seemed reasonable to him. He was convinced he would die without food. In hindsight, that decision adversely affected the rest of his life. It could not be undone. The effects of his decision overflowed to others in his family and community.
This story is a good caution for me. When I lack margin, am hungry, overtired, or cranky it is a clue I may have neglected self-care. It’s time to backtrack and take care of me and avoid making decisions. Life and those around me may look different after a satisfied tummy, rested body, or a walk around the block.