I often feel isolated. Many parents of children with severe disabilities share this sentiment. When our little ones arrive, there’s a mix of joy and sympathy. Friends offer support, but as time goes on, some fade away because they don’t know how to engage with our reality.
In the early days, our children may seem less daunting—easier to lift and more manageable to care for. Finding a babysitter for a short time away feels feasible. However, as our children grow, genuine support dwindles. Friends become preoccupied with their own lives, gravitating towards those who seem less burdened by stress, or they may feel overwhelmed by the idea of caring for a child with complex needs. The reality is that many of us find ourselves navigating this journey largely alone, especially as our children age.
The loneliness intensifies over time. Parents often find themselves pulled in different directions, leaving little opportunity for meaningful conversations with their partners. Those rare moments of solitude can feel like bathroom breaks, and the thought of coordinating a day out becomes a distant dream. Offers of assistance become scarce, leaving us to manage the daily challenges largely by ourselves.
People often suggest self-care—exercise regimens, reading lists, or even drastic lifestyle changes. Yet, these recommendations feel nearly impossible to implement amidst our chaotic schedules. It’s easy to feel inadequate when it seems everyone else is thriving, while we are merely trying to keep our heads above water.
As a parent of a child with severe disabilities, life can often feel like a balancing act. Daily, we confront feelings of inadequacy—our efforts never seem sufficient. Paperwork never ends, and appointments are constant. Often, work takes precedence over family needs as we strive to prove our competence, only to find ourselves questioning our worth amidst the overwhelming demands.
Social media can provide a lifeline—a way to connect with the outside world. On platforms like Facebook, there’s often someone awake during our sleepless nights, ready to lend a listening ear. These connections remind us that we’re not truly alone; someone out there understands our struggles and offers support, even from afar.
It’s crucial to resist the urge to vanish into our insular world, even when surrounded by people. We strive to remain positive and strong for our families. It’s a constant battle.
I wish I could express to my family and friends: I apologize for becoming absorbed in my own challenges, forgetting to check in on you. You matter too, and I genuinely miss you. I know you wish to help, so please, if you want to assist, just do it. Your presence alone would mean the world to me. I’m still here, and I still need you in my life.
I’m still here.
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Summary:
Parenting a child with severe disabilities can lead to feelings of profound isolation as support dwindles over time. The pressures of daily life and the overwhelming responsibilities can create a sense of inadequacy. While social media offers some connection, the struggle for self-care and maintaining relationships is real. It’s important for friends and family to understand the needs of these parents and offer genuine support.