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From My Heart to Yours

At eight months old, our son had just awakened for his morning bottle. As Sean and I cuddled on the couch, I lifted the bottle to his lips. To my horror I watched helplessly as his mouth and eye twitched non-stop. With Sean in my arms I raced upstairs and woke up my husband Russ. We nervously called the pediatrician who advised us to take him straight to the ER. After eighteen long hours of testing, they discovered a massive brain tumor. We were completely stunned! Sean was then transported to our local Children's Hospital in Orange County (CHOC). After more tests and scans, the neurosurgeon pulled us aside and began showing us the mass in Sean's brain on the MRI. Surgery might leave him blind, deaf, mute or paralyzed. But we knew surgery was his only chance of survival. We were standing in utter disbelief when the neurosurgeon told us after surgery that Sean had a malignant Stage IV tumor and was given a 2% chance to live. Our journey toward his eventual miraculous healing will be told in my upcoming book. But for now, this experience ushered us into the world of special needs.

I've always considered myself fortunate in the world of special needs. Because Sean was diagnosed with "Brain Injury", we were guided into many therapies: speech therapy at age two, special day class at age three, early intervention of OT, PT and vision therapy. By age four though, I started drifting into unknown territory. This was a frustrating and scary time. But I learned how to lean on other parents in my son's classroom to get information.

I had to figure out why Sean wouldn't climb up the stairs or go down the slide. Why was he terrified of the swings? These mysterious fears made perfect sense once I researched Sensory Processing Disorder. Armed with my newly-learned words, "vestibular system", I requested (in writing of course) that Sean be evaluated for this disorder at an emergency IEP. That was my first victory at an IEP! After therapy in this field, Sean learned how to climb the stairs to the slide and swing on swings. Today he rides roller coasters!

Each year with Sean brought a new trial, from behavioral challenges to learning difficulties. We still deal with medical challenges like seizures, peanut allergy and his peripheral blindness. But thankfully I love to research. As I would learn something new regarding the brain or special needs, I began to write down my knowledge. Now, twenty-four years later, I am overflowing with knowledge and have a deep desire to share what I've learned along my journey.

One dilemma we moms, dads and caretakers face in raising our special needs children is keeping everything organized. We coordinate their medical, therapeutic, educational and behavioral information. We encounter a nightmare of paperwork and endless phone calls to insurance companies, doctors and schools. We really aren't paid enough! Over the years, I have created some systems for organization that I will soon be sharing with you.

It is my deep desire to share from my heart to yours. We are under intense stress to hold everything together. Whether you just recently received a diagnosis for your child, or you've been here a while - Sparkling Hope is a place for you! As we become a community, our sharing and networking will enrich all of us.

Please visit our Community to leave comments and ask questions. I'm looking forward to sharing and connecting with you!

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