It’s hard to put a finger on what has been the hardest part of Kimball’s medical journey. Watching him suffer will likely remain number one on that list forever. But a close second is the isolation. Having a child with disabilities is so very isolating. With his arrival, it became difficult to relate with my family and friends. We were suddenly worlds apart. And I know I’m not the only one! I’ve heard many parents talk about how lonely the journey can be.
But one of my favorite parts of the journey goes right along with the isolation from the world at large and that is connection! Because of being thrust into this “other” category, the deep and often instantaneous connection I’ve experienced with other parents in the same boat has been incredible.
In this solo episode, I share my constant battle between the two ends of the same stick and the affect it had on my journey.
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It’s hard to put a finger on what has been the hardest part of Kimball’s medical journey; Watching him suffer will likely remain number one on that list forever.
But a close second is the isolation.
Having a child with disabilities is so very isolating. After receiving Kimball’s diagnosis while pregnant with him, it immediately became difficult to relate with my family and friends. We were suddenly worlds apart. The shift was swift, unexpected, and incredibly painful.
When I told them about the news, I felt so “other”. None of them had experienced this before, and we were starting off—involuntarily—on a journey without their company. My very capable mom and mother-in-law had never been on this journey before, and I felt deprived of their guidance when I needed it ever so badly.
A woman around their age was able to step in and tell me a bit about her life with her son with Down syndrome. It felt so wonderful to have a mentor to show me there would be brighter days ahead, and yet she wasn’t my mother. She was one of the only people I had in my circle of acquaintances with a child with disabilities. So, she is who I turned to.
What amazed me was the closeness I felt with her as she shared with me her love for her son (who had passed away a couple years prior). With eyes brimming with tears, she told me stories of the ways he had made the world a better place. Our hearts touched in a way I hadn’t experienced before. It was remarkable. After we separated, I savored that feeling of deep connection. Amazingly enough, I was not alone in my isolation.
We shared it.
In that one conversation, she had gone from a mere acquaintance to whom I might have said “hello” to once or twice before, to a dear friend.
That experience marked the first of countless like it.
As time went on and I became more emotionally willing to reach out, I savored those moments of closeness with other parents of disabled children. I’ve found them spontaneously in doctor’s waiting rooms and more intentionally at parent gatherings. I’ve found them on Instagram and as I interview guests for The Rare Life. The other parents I share this world with have become their own kind of family—we get each other in a way few can.
So, while the isolation from the rest of the world is still painful and heavy at times, it has become so much more bearable because of the special-needs community that I am a part of. In fact, the other end of the stick of isolation from family, friends, and society at large has become that soul-illuminating connection with other parents. It’s a part of my journey with Kimball that I really love. It’s a gift I wouldn’t have without the isolation.
And the dance between the two sides of that is constant.
When I find myself with the mindset of isolation, I feel it even in the company of other parents like me. I search for the elusive and nonexistent person who relates with my experience completely. Of course, this person doesn’t exist, and the unintentional search for her is damaging. Instead of feeling that connection and community, I see all our differences.
I notice that her child is in a wheelchair, and mine walks.
I notice that his child uses a cochlear implant and signs, and mine wears hearing aids and speaks.
I see her child has a totally functioning nose, and mine does not.
I found myself comparing and therefore feeling lonely, even at various parent conferences, created to help me feel less alone.
Recognizing this tendency has been huge in combatting it. On good days, I’ve chosen to focus on finding the commonalities instead. I choose connection over isolation as much as possible.
And what about my dear family and friends? Am I destined to live in a different world forever?
Well, yes. And no.
In reality, unless one of them has a child that throws them into my world of disabilities and hospitals and therapies, they never will truly know.
And yet, something we will always have in common is hardship. And challenge. And heartache.
It’s something no one is exempt from, as much as it may appear otherwise sometimes.
So, I connect with my family over the heartache and the challenge. We may never fully grasp what the other is going through, but we can grasp what its like to hurt.
The world of challenge is one we all share. And its one we can go through together.
Aug 12 2021, 6:53am
Thank you so much for this. I stumbled upon your podcast by chance and this is the first one I listened to. It was perfect. I had three month premature twins in august (after years of IVF and infertility issues) and after a traumatic birth, both are medically complex, one with a rare disorder. Feeling isolated and trying to connect to ANYONE has been one of the hardest things so far and I’m just getting started on this journey. Thank you for your words that spoke straight to my heart and found me nodding along throughout thinking “omg that’s how I feel!” So thank you, again, for helping this heavy-hearted new momma feel a little less alone. ❤️