Dec, 2008
I typed in the title of this post and then got all shaky and had that limbs going numb kind of nervous feeling that comes from your core. Every time I even talk about Asher’s hydrocephalus it can turn into this. I’m okay, but I’m not okay, and that’s okay. That’s true for Asher, too.
Over the last three years, I’ve slowly started to dip my feet in a deeper hydrocephalus knowledge pool, not by googling (THANK GOD) but by asking Dr. P. the hardest questions and thinking all the way through things rather than pushing away uncomfortable possibilities.
Hydrocephalus is not a death sentence, but the reality is that it can be. 50% of shunts malfunction within two years. That percentage rises as more years go by, and malfunctions are too often deadly. You know what? That scares the hell out of me. I know I can’t sit forever in that fear, but sometimes I need to turn to it and let it have it’s way so I can figure out how to set it down rather than having it lurking behind me like a dark shadow with its arms raised. As Asher’s mom, I’m terribly hopeful that advances will be made with his condition that guarantee he is going to be okay.
The Hydrocephalus Association is making a great effort at doing just that and so we will walk. We’ll be called Asher’s Noggins and we’ll walk for him and for the million other Ashers out there, living with the discomfort and fear of this condition.
When I tell people that Asher had a shunt put in when he was one, they almost always assume he was a preemie and his hydrocephalus wasn’t caught until later. That’s not the case, though. Asher has a genetic form of this condition and anyone can have hydrocephalus at any age.
If you’re of the Minnesotan variety and you’d like to come walk with Asher’s Team, we’d so love to hang with you…while walking…and talking. The Noggin himself will be there and he’ll act all shy at first and then make friends with you. Cause that’s how he rolls. Elsie, on the other hand, will most likely either pummel you to the ground or shriek loudly at you and then she’ll smile sweetly and say Hiyaaahh. Miles? He will roll like Asher, shy and friendly simultaneously. The walk takes place at North Community Park in Rogers, Minnesota.
- If you plan to come and walk with us, you can sign up (this should take you to Asher’s donation page and then you click on JOIN MY TEAM above his hilarious photo). You can then collect some of your own donations from friends and family via the website. (I’m simply sending out a HEY WE’RE WALKING! email and mentioning this on facebook in hopes that those who feel the nudge will help us out.)
- If you’d like to be a part of this in person but can’t because of distance or other obstacles, please take a moment to consider making a donation to The Hydrocephalus Association in Asher’s honor. We’re just one little EO family with a goal of $1,000 for Asher’s Noggin Team.
Thank you, friends. I know a lot of you have been ’round these parts since the day we found out Asher had hydrocephalus. Then you thought about us a lot and you prayed for us during his surgery and recovery and I’ll never forget it. I guess I’m saying he still needs you and me and us.
“Mommy! I’m comin’ to sit by you!”
P.S. I’m so happy to answer any and all questions, in the comments or email: heatheroftheeo at gmail dot com
Peace.
{ 11 comments }
i was diagnosed with pseudo tumor cerebri in 2008 at age 21. basically the same as hydrocephalus… too much fluid which causes raised intracranial pressure. it got its name because the symptoms mimic a non-cancerous tumor, but it’s “just” fluid. i have a shunt, which was placed 12/08, revised 12/09 due to obstruction, revised 12/10 due to faulty magnet which led to the setting changing all the time, and an ICP monitor in Neurosurgical ICU 6/11. i’ll be praying for you all!
Michelle,
Thank you for your comment and prayers. You’ve had such a rough road. I’m sorry. I can’t imagine what it would be like to live with all that you have lived through and have to worry about what might happen next. I wish you so much peace and we will pray for you as well.
Heather
I was diagnosed at 16 with hydrocephalus in 1988. Fluid covered 90% of my brain and I was weeks away from permanent brain damage. A shunt was put in – never replaced, never malfunctioned, never removed. I am now a successful lawyer with a husband and two healthy kids. Keep the faith.
Wow, wow, wow, Heather. I had no clue. These things that happen to our babies – they just rip us up, don’t they? Glad he has a shunt, praying there will be more answers as he matures. Hope the walk is a huge success!
Diana Trautwein recently posted..5 Minute Friday – Graceful
Go Team Asher’s Noggin! Love and hugs to you and yours, dear Heather. What a beautiful family you have!
Eileen recently posted..Life is a Dream at Cars Land: Disney California Adventure
SO wish I could beam myself up there to walk with you. You have one cute and brave boy there… xo
Elaine recently posted..Toddler Times
Heather, what an amazing walk of life you have been on with your kids… I dropped a penny or two into the donation bucket. If MN weren’t so far from California, I’d join you and walk too. Hug that little one for me-whichever one is closest !~!
Heather, Your story touched my heart. Please know my prayers are with you today as you look for treatment and healing for Asher.
Deb recently posted..Bizarre Things I have eaten. really.
What an amazing journey you are going on. Your son is so lucky to have you as his mommy. Sending you lots of love and positive thoughts!
Julia recently posted..The Difference A Year Makes
I am really interested in joining you in Rogers, but Annika, my 6-year-old, would have a really hard time walking three miles. Are Miles and Asher doing the whole distance? If not, are there supervised activities elsewhere in the park for small kids while their parents walk?
I’ll be walking with you in spirit.
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