Our journey began in March 2015, a time when everything changed in an instant. During a routine ultrasound, the technician’s once cheerful demeanor shifted to one of concern. As a pediatric nurse, I recognized the signs — something was amiss.
Days blurred into an agonizing wait, culminating in an hour-long MRI scan of my 24-week-old baby. The pillow beneath my head soaked with tears, muffled by the noise of the machine.
Fast forward to a stark conference room, where I clutched my husband Jake’s hand while a neurosurgeon outlined potential diagnoses and outcomes for our unborn child. Jake’s insistence on statistics and severity ratings yielded no clear answers, leaving us in a fog of uncertainty.
Later, I found myself weeping on our deck, grateful for the warmth of the sun on my face, but deeply troubled. How had I gone from a hopeful newlywed to a mother grappling with fears about my child’s future? Could I handle this? Would he have a meaningful life?
Despite the overwhelming unknowns, one thing was for certain: this baby boy was already a part of me, and my love for him knew no bounds. I spent countless nights crying myself to sleep, engulfed by anxiety and sorrow.
Fast forward four years, and while much has changed since our sweet Leo’s arrival, some things remain the same. I still occasionally cry myself to sleep and spend late nights researching his condition, often spiraling into a whirlpool of possibilities and outcomes. My mind is a constant flurry of appointments, tests, and medications, all while I manage a rollercoaster of emotions — fear, hope, joy, and sadness. Any setback sends me into a tailspin, reminding me to breathe and “wait and see.”
What many don’t grasp is what “okay” truly means for us. It signifies stability. Jake and I tirelessly manage Leo’s medical challenges to minimize complications. Leo has lipomyelomeningocele, a complex form of spina bifida. His neural tube failed to close properly, and a fatty mass (lipoma) formed, intertwining with his spinal nerves. Despite two invasive surgeries aimed at detaching this mass, we have not achieved full success. As a result, Leo faces significant neurological deficits, including lower limb weakness, drop foot, and bowel and bladder dysfunction.
Our supportive friends and family have been instrumental in our journey, and we appreciate each one of you. From your perspective, Leo appears healthy and happy, which is why we often keep updates simple.
Question: “How’s Leo?”
Response: “He’s doing okay…”
But what people don’t realize is that “okay” for us is layered with complexities. It means that we navigate Leo’s medical needs daily. We want honesty, yet discussing the intricacies of his care isn’t always suitable for casual conversations.
Question: “How’s Leo?”
Response: “He takes his medications well, as long as we mix them with whipped cream. He tolerates catheterizations every four hours, provided we’re not in public, and he hasn’t had any accidents at school since we began doing enemas twice a day. I drive over the mountain for physical therapy services, which is a trek, but we make it fun with snacks and games!”
Lipomyelomeningocele is a complicated condition without a cure, and it’s likely that Leo’s situation will worsen over time. His bladder and bowel will not function independently. The truth is, we don’t know what the future holds for Leo, and that uncertainty can be overwhelming.
Yet, amid the challenges, Leo has been a profound blessing in our lives, providing me with purpose. I can’t help but wonder how different life would be without our miracle. There would be no spontaneous kitchen dance parties, no rounds of “Twinkle Twinkle Little Star” at bedtime, and fewer moments of laughter and joy.
So, we persevere. We make the drives to various cities for appointments. We organize our lives around his procedures. We keep meticulous records of medical expenses in hopes of tax deductions, and we continue to advocate for Leo’s care and rights. We’ll keep dancing in the kitchen, indulging in donuts, supporting one another, and loving fiercely. Leo is okay, and even if he isn’t always okay, we will be fine.
For more insights on navigating parenting challenges, check out our post on potty training at Home Insemination Kit. If you’re interested in learning more about family-building options, Resolve is an excellent resource. Additionally, visit Make a Mom for authoritative information on home insemination kits.
Summary
This heartfelt narrative recounts the author’s experience discovering her son Leo’s diagnosis of spina bifida at 24 weeks of pregnancy. The emotional journey encompasses her fears, the complexities of managing his medical needs, and the transformative joy he brings to her life. Despite the uncertainties ahead, the author emphasizes love and resilience in the face of challenges.
Keyphrase: Spina Bifida Journey
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