I remember a time when our family was getting ready to leave the house on vacation. I was the rather typical mom hurrying to finish all the packing which included my personal things, helping each of the kids make sure they had critical items, gathering all the many things Carly would need, and filling a cooler with food.
Even though there were added complexities and stresses from trying to make sure I was not forgetting anything (doing it perfectly and avoiding every potential pitfall of traveling with Carly’s complex needs), I believe the scenario was playing out quite like it would in any household when a family is getting ready to be gone for a stretch. So, it was quite a shocking wake-up call when one of our daughters reacted to my stress by screaming, “why do we have to be such a high-maintenance family?”
In that moment, it became clear to me that disability issues were starting to take over how our children saw themselves and their family. I think we were all letting Carly’s needs take over who we viewed ourselves to be.
We thrive when our personal and family identities are centered on being children of God.
Your circumstances and life experiences are shaping and influencing you. Those things may consume you, but they don’t define you. Disability is affecting your children’s experiences in a big way. It is influencing their character and perspectives. But it doesn’t define them as people.
Siblings of sisters and brothers with extra needs will grow up with unique and highly purposed perspectives. But no person’s greatest burden or virtue is being part of a family impacted by disability or even by parenting a child with special needs.
The source of your importance and value comes from your Creator who designed you with a unique personhood.
Is your identity anchored in being a child of God or being a caregiver?
If you have received the gift of salvation from your sins, then you are a child of God (John 1:12-13). That is the ultimate beginning, middle, and end of who you are. Society doesn’t tell you who you are. Your career or role in life doesn’t tell you who you are. Some disease or condition is part of you but not your ultimate defining reality.
If you rely on what you do or how you feel for a sense of value and importance, you will never know the fullness of life God offers or His peace that surpasses all understanding. Your fullness and peace will be limited to your circumstances or something you feel you’ve earned.
You are valuable simply because God says so. He calls you His masterpiece, not because of anything you’ve done to earn that favor — even how much you might have succeeded or failed at caregiving and parenting (Ephesians 2:8-10).
Peaceful and satisfied caregivers resist giving disability all the power over their mind, emotions and responses.
We are all powerless over certain areas of life and we need God’s help.
God redeems our weakness and sin. We can rely on His perfection and authority. We get to feel angry and intensely disappointed. But our emotions and how we respond to them fall under the care and direction of the One who designed us and authorized our circumstances.
God has the final say about where our power comes from.
The truest thing about you is that you are designed by God for relationship with Him. He made that possible at great cost.
Jesus lived, died and rose to eternal life to set you free from being enslaved by your challenges.
Jesus didn’t promise a life without trouble.
He promised peace to your soul, fullness of life on earth, and eternal life with Him in heaven.
We need to be well fed and well led ourselves in order to feed and lead our families well.
Caregiver, pay close attention to keeping yourself spiritually fit. J.R. Miller said, “The true goal of life is not to be great, or to do great things, but to be just what God meant us to be.”
The focus of our respite strategy should be clinging to the Vine. Drink deeply of any scripture, worship song, friendship, prayer and other reminder that you are cherished by God. Then reassure your spouse and children that loving the One who is love is the single greatest thing any of you will ever do.
Have you wondered who you were meant to be or what your purpose is? Don’t let the enemy bully you into thinking that you are disabled from fulfilling your purpose because of disability. Don’t let society shame you because you’re not producing something that looks like what others are doing.
You are caring for a complex family. And you are shining the Light of Jesus into that situation with every loving breath you take of the Holy Spirit. Nothing you do is insignificant. Your days may feel tedious and mundane, but it all matters in this unexpected mission into which you’ve been called.
Ginny Owens, an award-winning songwriter and friend of this ministry, writes in her book Singing in the Dark, “The goal is not for us to got out and make sure that the whole world know who we are and what we do. The goal is to do what he’s called us to do in the place and the moment where we are.”
Caregiver, you and I are in a life-long process of learning. We are learning to love and serve in incredibly stretching circumstances. Have compassion for yourself and your own limits. Trust your Heavenly Father who offers a profound love. The world offers nothing to compare with it.
Receive that love.
Rest in it.
Then follow Jesus into the world with it.
“I have loved you even as the Father has loved me.
Remain in my love.
When you obey my commandments, you remain in my love,
just as I obey my Father’s commandments and remain in his love.
I have told you these things so that you will be filled with my joy.
Yes, your joy will overflow!
This is my commandment: Love each other in the same way I have loved you.
There is no greater love than to lay down one’s life for one’s friends.
You are my friends if you do what I command. I no longer call you slaves, because a master doesn’t confide in his slaves. Now you are my friends, since I have told you everything the Father told me.
You didn’t choose me. I chose you.
I appointed you to go and produce lasting fruit, so that the Father will give you whatever you ask for, using my name.
This is my command: Love each other.”
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.