Today was a very long day. My beautiful little alarm (you) woke me at 5am. You were very happy for the first few hours today. Just as I was leaving for work, you were snuggling back into bed for an hour before you needed to leave for school. I called Mrs. Busa and arranged for you to come an hour late so you could sleep a bit longer. Thankfully, that worked for Daddy too.
At pickup, I received my first ever cranky report. You were cranky at school today, normally you are always happy. Today, you vocalized complaints. You continued to be cranky. Thoughts start flooding my head: Are you just tired? Are you teething? Does your belly hurt? Your ears? Could you possibly have a headache? Is it your shunt? It is hard to know with you because you seem to have a high pain tolerance and you are not verbal. One thing is true, I live on a heightened alert because of your hydrocephalus.
Hydrocephalus Facts:
-One to two babies of every 1,000 are born with hydrocephalus, making it as common as Down
Syndrome and more common than Spina Bifida or brain tumors
-It is the most common reason for brain surgery in children
-There is no cure. The only effective treatments are surgical
-Hydrocephalus affects infants to elderly and all walks of life from every socioeconomic background
(Just a few facts listed on the Hydrocephalus Association Website)
Savannah, I will be the first to admit, I had no idea the word hydrocephalus even existed. It took a short time for me to spell hydrocephalus. Many times (less important) medical professionals don't even know how to pronounce hydrocephalus. It all started with you. The word, meaning, understanding, fear, and the reason I walk for a cure. This year we will walk and honor you again.
In my additional efforts to raise money to find a cure, I designed a tee to raise hydrocephalus awareness. This idea stemmed from a fundraiser Kelle Hampton did to honor her daughter by supporting the Ndss and children of all abilities.
All proceeds of my tee will go to the Hydrocephalus Association in honor of you sweet Savannah Mae. I love the design. Be YOUnique, refuse to sink. Always be YOU and never give up this fight.
If you would like to help support our walk, please click here. www.teespring.com/hydrocephalusawareness
Thank you for your support. youth sizes will be available 7/23
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