I was so honored when the incredible mommas at Trust the Journey Project invited me to share our story with them! This version of our story with a specific focus on “Grief” was shared on May 9, 2020.
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It’s been one year since my life changed forever.
One year since my sweet Cami, only 15-months at the time, received her #AngelmanSyndrome diagnosis.
One year since I learned I may never hear her say “momma,” she may not walk, and she’d never live independently.
One year since we became a special needs family and I became an advocate, a case worker, a blogger, and an expert on a topic I never knew existed.
The day I received her test results crushed me to my core. It was a heartbreak I didn’t know was possible. In an instant, I lost every dream I had for her, visions of my daughters fluffing each other’s wedding dresses and hosting each other’s baby showers, and the opportunity to hear her thoughts on the world. I was quickly thrown into the big, confusing world of managing a rare disease – neuro, GI, rehab, genetics, early intervention, physical, occupational, aqua, and speech therapy, AAC, PECS cards, adaptive equipment, seizure control diets, clinical trials, medication after medication, supplements to help with the effects of the medications, Medicaid, SSI, waivers… tired yet? Me too.
As I reflect on the past year, the topic of grief has been heavy on my mind because early on, I felt guilty “grieving” her diagnosis. After all, there were parents in my new special needs support groups receiving far worse news about their babies. Her diagnosis isn’t degenerative, it isn’t fatal, and in fact, it’s known for happiness – and isn’t that what we all want for our children? I should be grateful.
But, the grief was REAL, it was necessary, and it took almost the entire past year to bounce back from it.
I was recently listening to Brené Brown’s new podcast and her guest speaker, David Kessler (an expert in grief), shared a few insights on grief that really resonated with me and my experience:
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>> What is grief? The death of something.
Y’all, grief is a part of this journey we call life. The loss of a loved one, a pet, a home, a cherished belonging, or in my case – a relationship and future I thought I had – is worthy of your time and energy to grieve that loss. Take the time to grieve!
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>> The worse loss is always yours.
THIS! Keeping things in perspective is helpful, but your loss is your loss… no one else’s. You have the right to deal with it your way.
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>> There is a sixth stage of grief: Finding Meaning.
“Acceptance” isn’t enough. My road to recovery began when I found meaning and purpose in my new life as a special needs momma… when I became empowered to not only #advocatelikeamother but to share our journey to connect, advocate, make a difference, and inspire others to help build a kinder world and brighter future for kiddos like my Cami. It certainly doesn’t have to be a blog, or anything public at all! But, finding a way to do something meaningful with your experience is an important step in moving forward.
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This stress and worry of this special needs life will never go away. But, one year later, I’m happy to report that the gravity, the heavy weight and heartbreak we carried with her diagnosis, has lifted and we are WILDLY hopeful for her future 💛
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So, to anyone receiving your baby’s rare diagnosis: I see you. You aren’t alone. It won’t always be this heavy. You CAN do this because, momma, YOU are a warrior!
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