The feeling of her gentle hand on my left elbow as she said, “We are holding out hope” will never leave my memory. What did that mean? Was I about to become a widow raising three daughters on my own? What was “their hope?” Was it the same as my hope? It was the day when I realized my life…OUR lives would never be the same.
Don’t get me wrong, our lives were not easy before this happened. I was in my final year of college when I met my husband. Studying to be a special education teacher, I was very excited to be almost done and venture into the world of educating young minds. As a girl, I seemed to always be helping my friends learn through their academic struggles and to lean into relationships that had a “wounded soul.”
So, special education was certainly right in my wheelhouse. I remember one time coming across this writing piece titled, “Welcome to Holland” by Emily Perl Kingsley. It was written to encourage parents of children with special needs who planned for one “typical child” but ended up with a “less typical child.” She equated it to planning a trip to Italy but ending up in Holland. It focuses on finding the beauty in the new trip despite not expecting it. Little did I know I would one day be that mom.
For our oldest daughter, we had spent countless hours, dollars, prayers, and tears trying to properly care for her. She needed specific medications and routines. She needed medical testing and appointments. She needed various therapies and interventions. She needed schedules and structure. She needed care, more care than what my friends were doing for their children.
It was tiring and draining. Eventually, she would be diagnosed on the autism spectrum but “high functioning.” This just means she doesn’t do all the things society thinks of as autistic or “normal.” With the feeling of that nurse’s hand on me and the sound of her voice, I flashed back to the night our first daughter was born and how out of control I felt when a nurse ripped her out of my arms at only four hours old because she was choking on her own saliva. I remember thinking, ‘Is she okay? Is she dying? What is wrong?”
Now, there I was again over thirteen years later in a hospital hallway and feeling out of control. There was nothing I could do but hold out hope. My husband, who would be turning 50 years old in less than two weeks, might die from a massive stroke and there was nothing I can do; but I knew God could do something.
God could answer prayer. God could heal him, and God could keep him here for me…for us. Just as I knew the moment my newborn daughter was ripped from my arms that I was venturing into Holland. I knew again we were not going to be in Italy as planned. If he survived this stroke, I was now going to be a caregiver of not just our daughter and our other two children but my husband too.
Being a caregiver for so many people at just forty-two years old was a lot to grasp. There were (and still are) days of true despair and brokenness. For two months, while he was recovering, I was alone with my girls. Family members came off and on to support, but two months is a long time to be in acute crisis as life still continues for others. It was hard for me to go on. There were nights when walking up the stairs to our bedroom felt like climbing a mountain physically and emotionally.
Would this be the way forever? Was “hope” enough? But God saw me through each time. Once my sister said, “Why not just sleep downstairs in the guest room? Wouldn’t that be easier?” She wanted to do something for me, to help me not feel the pain I was in, but she couldn’t; no one could. I told her, no – no one can feel for me, I had to do it; I had to climb those stairs. It was a way of walking toward acceptance of what life was now. No matter how late at night it was or really how early in the morning it was; I walked those stairs with God each time. I still walk those stairs and so does my husband. He goes a lot slower than I do as I breeze by him pressing on to do the next task to care for him and our girls. But with God, we both walk those stairs.
Being a caregiver, you provide care for others, but God provides others to care for you. It is hard to accept the loss of independence and freedom to come and go as you wish; to be spontaneous, and to walk the stairs of life at your desired pace. It is difficult to accept help when you are the helper.
However, through my life, I have learned it’s not a sign of weakness or neediness, but it’s God at work. As I care for my family, others open their hearts, minds, homes, and even sometimes their wallets as they are led to care for me, for us. Through caregiving, God reminds us the plans and goals, and accomplishments we strive for really are not what life is all about; it is about relationships. Life is about our relationships with one another that should resemble our relationship with our Heavenly Father; His Son, Jesus, and the Holy Spirit; the power of God inside each of us that He so lovingly and sacrificially gives to those who believe…to those who hope in Him.
Being a caregiver is so much more than showers, medication, wheelchairs, and record-keeping – it is fighting for the cared for; it is sometimes fighting with them to work toward their goals, fighting for what is best no matter how much they like it or agree with you.
It is a recognition that you are not at battle just for the physical needs of the cared for, but you are in a spiritual battle for the well-being of these people with whom you have a relationship – God’s children. Knowing what is at stake as a caregiver lights a fire under you that keeps the midnight oil burning even when your own flesh wants to give up the fight.
Being a caregiver, you can feel alone. But God makes sure you are not; you have to look each day at who He has placed in your life to listen, to provide, to encourage. You have to reflect and see just what He has done to prepare you. God prepared me. God knitted me in my mother’s womb as a very vocal person, an advocate by nature and I can use that special gift of being a fearless communicator to fight for the needs of my family.
He guided me into the area of special education. He equipped me through my own daughter’s medical struggles so I would be ready for my husband’s. God gave me understanding co-workers with warm hearts to provide Christmas for my family five days after my husband was released from the hospital. God had my children as students at that particular school with staff and administration with whom I easily developed relationships and could call upon for help. When the principal and music teacher blow your lawn’s leaves and help you with dead batteries, flat tires, and specially marked seating for your husband’s wheelchair at your daughter’s music concert, you know God is at work. God is at work not only in your life but in theirs as well.
Nine months after my husband’s stroke I lost my Mom to cancer. She was my biggest help in so many ways and I couldn’t understand why God was allowing this to happen to me…another loss. And now I was going to assume the role of caregiver again sandwiched in generations between my daughter, my husband, and now my father. I was lost and confused but God showed up again and placed people in each circumstance, each place I would need to go, each phone call I would need to make to find living arrangements, medication, appointments, and so on and so on. God placed people, who no doubt were changed just a little by hearing my story as to why making one single visit to an appointment caused so much stress, and why it took several minutes of moving things around on my calendar.
During the COVID shutdown, my Dad passed away and the world was slowed down enough when I had those moments when even as a believer one may wonder, “Am I being punished or paying for sins of my past?” But God afforded me time and space to draw even closer to Him, to look back on my life and see not that I was being punished but this was His plan all along.
God had me flashback to my childhood to see what He did to prepare me for what only He knew was in my future. I was the “mommy” when we played house. I was the oldest out of three girls, carried a key around my neck, and got us off to school. I was the one whom friends would call when they were sad or needed advice. Even now in my profession, I am the one people turn to for a listening ear or help to solve a problem. Call it nature or nurture but simply – it’s just God.
I can choose to fight against it, determined I deserve better, deserve to be taken care of, and deserve not to work so hard. But God has a different plan for me; it would be foolish to fight Him. I need to trust Him. I need to trust that He loves me and that only He truly knows what I need to do His work. He will always be my good shepherd. I just need to stay close so I can hear His call to move, to dine in the green pasture, to rest by the still waters, and to avoid the wolf. I have come to a place of acceptance that this is what I was made to do, to care for others and know God will care for me.
Now, there are still days when I mess up. I push a little too hard. I passionately express (yell) at times. I place my own thoughts and feelings into a situation when I shouldn’t. I fail to let go and I fail to hold on tight. I go to bed mad, and I cry and ask why. I miss the signs and fail to see the blessings still. I am human but God reminds me He has given me this mission and although I am bound by my own flesh, He gives me grace each and every day. As it states in Lamentations 3:22-23, “Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.” As a person walking this side of heaven, this is all we truly have – a new day to care for who God has placed in our lives and trust God will care for us.
Prayer for Moms:
Father God in heaven, through the Holy Spirit, I pray for open hearts and minds to the plans You have for each and every mother who is coping with being a caregiver. Whether it be under the typical stresses of mothering or the special circumstance of special care, guide them in their decisions. Bring them peace in their hearts and homes. Let them know You are there for them to lean on when they feel tired and weary; whisper to them through their earthly relationships – they are not alone. Provide them with energy, ingenuity, understanding, and mercy. Place people in their path to support their efforts as Godly mothers. Give them all they need as they provide for the needs of their loved ones. In Jesus’ most precious and powerful name I pray. Amen
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