An Open Letter To My Mom, My Caregiver

As Mother’s Day approaches, I find myself reflecting on all the things my mom has done for me since I was diagnosed with spinal muscular atrophy (SMA). Caring for someone with special needs requires a really special type of person. They must often exhibit selflessness, kindness, and care. They must possess a deep understanding, compassion, and empathy. Additionally, they need an abundance of patience.

Lifelong sacrifice

For twenty-nine years, my mom has been my caregiver. She has sacrificed her entire life to ensure my well-being. She puts her own wants and desires aside to provide me with the life I want and make sure I have everything I need. My mother has been with me from the very beginning, and I wouldn’t have it any other way.

I'll never be able to fully repay or thank her for everything she has done and continues to do for me daily, but I'd like to express my gratitude in some small way through this article.

SMA had deepened our bond

Living with spinal muscular atrophy (SMA) has not only shaped my life but has also deepened our bond in immeasurable ways. It has shaped her life too. Living with a disability entails two perspectives: the person living with the condition and the caregiver's perspective. Ours happen to be imtertwined.  The daily rituals of bathing and dressing, tasks requiring intimacy and trust, have brought us closer together in profound ways. There's no one I'd rather have by my side during all my vulnerable moments than my mom.

We spend every day together and still manage to find ways to make each other laugh amidst the absurdity of our daily routines. We've laughed until tears rolled down our cheeks, especially when dealing with mishaps like the time my pants ripped while transitioning from my wheelchair to my bed.

My mother is my closest confident

Throughout my journey, she’s been more than just a caregiver; she’s become my closest confidante and best friend. Growing up with a disability has taught me to appreciate remarkable qualities in those around me, none more so than in you. Your kindness, compassion, and unwavering devotion inspire me every single day.

We've developed our own unique rhythm and understanding, forged through years of navigating the challenges of wheelchairs and SMA. There's an unspoken language between us, where a simple glance or gesture speaks volumes, a testament to the depth of our connection.

Of course, like any mother-daughter relationship, we've had our share of disagreements and misunderstandings. Yet, what sets us apart is our ability to forgive, to let go of grievances, and to embrace each other's imperfections with grace and understanding.

Love transcending any disagreement

That's not to say we haven't struggled and still don't struggle with each other every now and then, because we certainly do. We bicker and argue like any mother-daughter duo might. But we always forgive, forget, and move forward. No love is lost because there will never be any love greater than hers. We always come back to an understanding, realizing that maybe the other is just having a bad day. And that's okay. That's what makes my mom so special. Her love knows no bounds, transcending any momentary discord or frustration. It's a love that grounds me, sustains me, and reminds me of the incredible fortune I have in calling her my mother and caregiver.

So, here's to you, Mom, the epitome of unconditional love and unwavering support. Words will never suffice to capture the magnitude of my gratitude, but know that your sacrifices, your kindness, and your love are cherished beyond measure. I’ll forever be thankful that you are my mom and my caregiver. If I had to pick someone to do this life SMA again with; it will always be you.

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