by Barbara Swoyer
Several months ago, my son turned 22. I felt grateful, lucky and blessed. I also felt apprehensive and overwhelmed. Like many other parents of children with special needs, it was a day that I dreaded, the day when my child would lose the entitlement of school and related services.
Reaching this milestone meant that he was continuing to beat the odds against a progressive disease and the prognosis of a limited life expectancy. It also meant that my vulnerable, medically fragile, and fully dependent son had officially taken his final step into life as an adult.
Logically, I saw this coming. Throughout his teen years, I threw myself into transition planning, creating a roadmap for what his life might look like as he moved from a pediatric to an adult world. Just in case he survived. I obtained guardianship, secured benefits, got him his own ID, and created legal documents.
At the same time, he continued to decline and lose skills. He remained in palliative care and spent almost two years in hospice. I signed medical orders for end of life treatment. I chose a cemetery plot and met with social workers and a chaplain to discuss end of life scenarios and options.
For the last ten years, I have been planning for my son’s future while anticipating his death.
By choice, our son lives and is cared for at home. It is a highly personal choice, and many considerations factor in to such a decision. Having him at home, though, creates a caregiving burden that seems to only grow larger as he grows older. The struggles are real and they are different from when he was younger. Some I anticipated, and some I didn’t. And I wonder, how do I as a parent reconcile my fierce love for my child with the very real burden of being a life long caregiver?
When I’m feeling particularly overwhelmed, I try to focus on the small gifts, the positives that have come with years of experience.
I have found there is an advantage to being a seasoned parent when it comes to dealing with anyone involved in his care. I have learned to trust my instincts. I have credibility with my son’s providers and am confident in my ability to advocate for his needs. I am not afraid to challenge the experts when I feel it is appropriate.
The early days of crisis and chaos have evolved into a somewhat normal routine. Dysfunctional to most looking in, but it’s our version of normal and we have learned to live well with it.
I am more emotionally accepting of my circumstance. In a way, things have become easier over time, as I have stopped pursuing treatments and a cure as relentlessly as I once did, instead focusing my energy and approach to care on his quality of life. Never giving up hope, but not living in despair.
I am grateful for the perspective that can only come with struggle.
I find gratification in helping the parents who follow me, and with a large virtual family, I do not feel alone. Likewise, I trust that I will receive wisdom and guidance as I need and request it from those who have travelled this road ahead of me.
With the good, though, there are new challenges and emotions that surface as the years continue to go by.
Despite his age, my son functions as a toddler. If anyone is familiar with the exhausting days of having a newborn in the house, that is essentially how it feels, still. You are awake at all hours, responding to the needs of your child, with little to no time for yourself. For most, this challenging time lasts for months. For us, it has lasted decades. My entire life is punctuated by his care.
As my child is aging, I am too. I feel my own mortality and there is a strong feeling of vulnerability. There is the unnatural and shameful hope that I will outlive my child so I know that I will be able to care for him for the entirety of his life. An acceptable, more sustainable alternative remains elusive.
I am more aware of the importance and need for my own self-care. The impact of living with chronic stress and exhaustion and full-time caregiving for many years is starting to take its toll. I worry about my own health and about remaining strong enough to meet the demands placed upon me.
I have intense love and concern for my child, but feel conflicted. I feel blessed and grateful, yet burdened and trapped by my situation. I long for freedom from around the clock caregiving and responsibility. I alternate between feeling like I am missing out on living my fullest life, versus feeling that I am right where I am supposed to be, doing the most important job I could ever have. I feel guilty, as I am acutely aware that the loss of my son is the only thing that will bring literal and emotional relief from the weight that I feel.
My son continues to decline and lose skills, sometimes so gradually that I can’t say when it happened, other times so abruptly that I’m shocked. He no longer has the ability or energy for activities that once brought him joy and pleasure. I worry about his quality of life and of him potentially suffering. I feel helpless, watching and waiting. As he grows bigger and his needs intensify, it becomes harder to find capable and consistent caregivers to provide much needed respite.
My other child has moved through his own transition to adulthood, moving out of the home and starting a new life. I hope that he feels free to pursue his dreams without worry or guilt. My son feels his brother’s absence, but there is no way to explain so that he can understand.
As the entitlement of school ended, my son’s lifelong routine of activities and providers had to shift, at a time when he is more fragile and less tolerant of change. Services are contingent on state budgets and are not guaranteed. I must fiercely and constantly advocate, justify and account for everything he needs.
The process of moving from pediatric to adult providers is complicated, daunting and lacks clear consistency and solutions. One by one, we have lost our long term, trusted physicians who knew us well. The loss of history that comes with the change of providers is impactful on his care and my credibility. It is hard to find trained and knowledgeable adult practitioners to accept such a complex patient. Services can be pulled overnight due to age restrictions and arbitrary legislation. The transition from pediatric to adult care and services can impact care teams, hospitals, drug trials, palliative and hospice care, and end of life decisions, among other things. The solid base of support that we’ve had over the years is slowing falling away and leaving his care in limbo and increasingly on my shoulders.
I worry about sustaining a healthy marriage. The awareness that we are partners in a very trying situation is never far from my mind. In some ways, it has made us closer. I am grateful for the love, stability and commitment that we have. However, I am also aware that we live very differently than most married couples and that the statistics against us are daunting. We are stuck living in the mode of “divide and conquer,” where one stays home, one goes. One sleeps, one doesn’t. A marriage of two has become a relationship of three with our child always present. The “empty nest” feels unattainable. There is an increased feeling of isolation as we struggle to maintain normalcy and carve out a life for ourselves, and as we watch our friends evolve into the next chapter of their lives while we do not. I worry about what will happen if our child survives years beyond expectation or if he does not, and how much of a strain either occurrence will be.
Despite the constantly shifting nature of my circumstance, and regardless of how long or short the arc of my son’s life is, the bottom line remains clear. My son is the most beautiful, simple and gentle of souls, my greatest gift and my greatest challenge. He loves and is loved unconditionally. More than anything, he has been my greatest teacher, and I view this time in his life and mine as another step in our journey together, as mother and son, caregiver and patient. I believe there is a purpose, a meaning and a lesson to his life and to the role that I have in it. I am sure that I am not alone in my experience. Through Courageous Parents Network and in my virtual community, we all too commonly and frequently grieve the loss of another child. Each time, I am reminded of the fragility of my son’s life and of how lucky I am that he is still here, and I trust that we will continue to find our way.
Barbara is the mother of two sons, ages 25 and 22. Her younger son, Jake, has Dravet Syndrome with Secondary Mitochondrial Dysfunction. Barbara is a founding member of the Courageous Parents Network Parent Advisory Board, and her reflections appear regularly on its blog, courageousparentsnetwork.org/blog.