You are cordially invited…
Did you know that cordially means “with intense feeling” and “in a warm and friendly way?” What a great way to start a party!
Parents of children living with disability or complex medical conditions find themselves needing to recruit an army of resources and a robust system of supports. Yet the odds are stacked against them. Caregiver shortages reached an extreme crisis in the US long before the pandemic of 2020. And the situation has only worsened since then. There is an ongoing nationwide crisis of need for nursing staff, personal care attendants, and respite workers in the disability and aging communities today.
That doesn’t sound like a party, does it? With that kind of sheer desperation, we are vulnerable to sounding like a broken record with our venting, whining and demands.
My own family has experienced remarkable seasons of support. We have also gone long stretches with far less help than we needed. I have sometimes felt entitled to receiving help from others. After all, shouldn’t it be reasonable to expect that my fellow Christians (at least the Christians) would step up with some form of prayer, encouragement, and/or practical help when I’m struggling?
Asking for help can be so painful—for those who need to receive it and for those who are being asked to give it. Despite the complexity of conditions, there are ways to make that process more pleasant and effective.
Caregivers have a couple of alternatives that are closely interconnected. One is to learn how to offer invitations without obligation. The other is to expand our trust in the One True and faithful Provider who knows our names, calls us his own, pursues us with immeasurable love, gives good and perfect gifts, and will not leave or forsake us.
Offer Invitations
It starts at home.
My husband and I have never wanted our disabled daughter Carly’s needs to restrict our other children from living their own lives to the full. Yet even as pre-teens, they were frequently asked to change the diaper of their elementary-aged sibling or to keep an eye on their sister while I took a shower. I certainly didn’t expect to find myself relying on my own children to support each other in the wildly life-altering degrees that they do! But, if I’m honest, I have aspired to see their future families knit together in strong ties of love that included some role in helping coordinate or advocate for Carly’s care in our later years.
When I’m not careful though, my fears influence my expectations or reflect as urgency in my tone of voice. It is dangerous to parent out of fear.
Parent-caregivers may privately or publicly have hopes about the involvement of others. Sometimes, well-meaning parents think they are protecting family members by excluding them from conversations. Consider what special needs parents have told me over the years…
“The boys adore each other. They played together all the time as kids and Joe still comes home to hang out with his brother a lot. It might break his heart when he finds out we’ve decided to move Jeff to a group home.”
“My daughter is only 5 years old but she’s already told me she wants her sister to come live with her when she grows up. I wish she didn’t have to bear any pressure of responsibility but, if I’m honest, this gives me peace.”
“The boys adored each other when they were younger. But something shifted when Eric became a teenager. I worry that they’ll never be close again.”
“From the first day she stepped into her dorm room as a freshman, her entire attitude about our family changed. She has no interest in her brother with autism anymore and she won’t talk to me.”
“Gabriel’s brother and sister have gone on to live their own lives. I appreciate that they give their dad and I input and perspectives when we have decisions to make about Gabe’s care. I’m thrilled that they all enjoy each other when we are together too.”
I was given a very helpful tip by our oldest daughter who has been connecting with peers through the Sibling Leadership Network. She explained that those who grew up with a disabled sibling say they want invitations to participate without the sense of obligation. They may hope to be included but want to maintain their sense of autonomy and make their own decisions about how they get involved.
Interested siblings appreciate being offered a voice at key times such as IEP meetings and doctor appointments, as well as in future and person-centered planning conversations. While they may not always be able to accept those invitations, opportunities to participate increase their awareness and confidence about what is involved should they ever be in a position to step up their role.
Photo credit: Lisa Jamieson.
In her book, Same Lake Different Boat, Stephanie Hubach shares how Joseph, son of Abraham, maintained a proper perspective about what he expected from others. It’s a helpful model that mirrors how our daughters would like us to approach them:
“Joseph’s God-centered focus did not preclude his asking for assistance from others. After Joseph revealed the dream of the chief cup bearer, he said to him, “When all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison” (Gen. 40:14). Joseph was not afraid to ask for help. Yet Joseph was not demanding. How can we tell? If Joseph’s comments after the revelation of the dream had not been an earnest request but a demand, he would have exhibited an incredibly negative attitude toward the chief cup bearer upon his release [because the cup bearer completely forgot about Joseph] — and it would likely have been included in the narrative. Instead, Joseph’s God-reliance allowed him to have a proper perspective of people. He could be vulnerable and ask for help, but he knew his ultimate Helper was God himself.”
This invitation-without-obligation approach to asking for help offers valuable insight for our situations. When we make needs humbly and enthusiastically known without attaching them to expectations, we are more likely to get genuine support that is more effective, long-lasting and satisfying for everyone.
The quality of our investment in each other’s lives is proportionate to how self-motivated we are. When my spouse, child or friend senses that I am putting pressure or demands on them (even inadvertently), they tend to withdraw. If my child or spouse freely chooses to spend time with me, I feel more genuinely loved, valued, and appreciated.
Expand Our Trust, Lord!
Even when our attitude, tone of voice and choice of words are perfectly timed, people will come up short of being helpful at times.
Periods of waiting for a satisfying response are unfortunate but inevitable. We can feel rejected and simply at our wits’ end trying to understand why God would let us get to the end of our ropes. But if we are met with silence after being clear, direct, humble and winsome about our needs, it may have more to do with someone else than it does with us (2 Peter 3:9).
People can be sluggish to respond because they are in their own hidden time of need. Or they may be stuck in the sin of neglecting their neighbor. You may never know what their reason is. In those times, we can grow bitter or demanding, or we can learn to expand our reliance on God.
The Apostle Paul’s experience in Asia is inspiring:
2 Corinthians 1:8-9
We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead.
The sting on our hearts is understandable to God. We can ask Him to meet that need too.
In my own family, we are increasingly having conversations about what each person is needing, hoping for, and capable of contributing from season to season. We plan to revisit these conversations when life stages or circumstances change. Our aim is to release our children from feeling disregarded and from living under the weight of any desperation, expectations, judgement, inflexibility, or fear we may have.
The key is releasing control over the results to Almighty God.
Families like ours must prayerfully develop plans but hold them loosely while trusting God to work out details. Situations and options will change (e.g., new housing opportunities for people with disabilities are emerging every year) and relationships will shift (e.g., children will marry). God may redirect us or ask us to shift gears.
Ultimately, we are called to keep seeking him, facing each day in attentiveness to the Holy Spirit—walking one step of faith at a time.
RELATED: Can Caregivers Expect Something Out-of-This World?
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.
