As I floated in a ocean side pool, this past week on a trip to Cabo San Lucas, with my sister, I watched as couple after couple laughed with a drink in hand enjoying each others company and the waves crashing into the Mexican shore below us.
I couldn’t help but think how nice it would be to have my husband with me on a trip. But I know full well that our days of taking any trips together have come and gone. With the constant challenge of finding care for Brantley, even for a brief dinner date, the idea of any trip together is utterly out of reach. A lesson we learned last summer when we were both at our breaking points.
While our love for Brantley knows no bounds, the reality is that we've been immersed in round-the-clock caregiving for nine years now, and the toll it has taken on both my husband and me is undeniable.
The relentless demands of caring for a child with special needs can take a toll on parents physically, emotionally, and mentally. While respite care aims to alleviate this strain by giving parents a brief chance to step back from the constant caregiving duties and prioritize their own needs and self-care so they can continue caring for their child going forward, its access is limited.
When we reached our breaking points last summer, my husband and I were blessed to find a provider who would care for Brantley while we spent a long weekend cruising on four-wheelers through the mountains with friends. A trip that would surely recharge our souls and minds so that we could resume our duties with a full cup. But as we arrived to our mountain side cabin, four wheelers in tow, we received the dreaded phone call – our respite provider had suddenly canceled.
Our family stepped up, but it wasn't without its challenges. I'll never forget the worry I felt, not just for Brantley, but for our parents who had to keep up with his boundless energy, lack of safety awareness and adventurous spirit.
Even with the stress of worrying about Brantley’s care, my husband and I returned from that trip feeling more relaxed and rejuvenated than we had in years. But the reality that we would likely never feel that way at the same time again stung and felt like a heavy weight placed on our marriage.
The experience forced us to face a harsh truth – relying on respite care is not a sustainable option.
As a result, we had taken our last respite trip together. Unless a new system with a greater availability of providers became available, one of us would need to stay home with Brantley at all times, much like my husband did for my recent trip to Mexico.
While assessments for services often inquire about "natural supports," emphasizing the assumption that family and friends will offer assistance, the reality is navigating Brantley’s needs is a task that exceeds the capacities of conventional support systems. An issue I know we do not face alone.
While we are fortunate to have a loving family - who will always be there in anyway they can, Brantley brings a unique set of challenges that exceed their capacity. An issue that has only been exacerbated as he has grown in size.
So here we are, navigating parenthood without the safety net that others might take for granted. The gift cards for a long-awaited date night that sit untouched in my wallet are a poignant reminder of the reality we face and proof of the scarcity of even a brief respite from our responsibilities.
Looking ahead, it is increasingly clear: any possibility of a future respite trip entail’s either me or my husband traveling alone, leaving the other to provide care for Brantley. The prospect of traveling together as a couple is overshadowed by the reality that Brantley's constant needs must always take precedence. If we do manage to travel together, the notion of respite will be a distant dream, as Brantley's presence and his ongoing demands will accompany us wherever we go.
We won't have the chance to collectively take a break from the never-ending duties of caregiving, to rejuvenate together, because Brantley needs our constant care – a commitment we are dedicated to fulfilling.
This scenario underscores just one of the many ways in which raising a child with disabilities can strain a marriage. While it is possible for one of us to take a brief respite, the weight of responsibility lingers heavily on our minds, knowing that our partner is shouldering the relentless demands of caregiving at home.
So every day, I pray for a new system – a solution that ensures the safety of individuals with disabilities while families like ours can seek respite. Until such a system is in place, Joel and I will remain vigilant in navigating the complexities of parenting a child with disabilities which often comes at the expense of our own well-being. #autismfamily #autismlife #disabilityawareness #respitecare #autismparents
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