Ashley Takes Charge of Her Hydrocephalus!

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Introduction by Jennifer Bechard, Support Group Liaison

Recently, Teens Take Charge Advisory Council member, Nicole Padron, asked the following question on Facebook: “What is some helpful advice that you would give someone who has been recently diagnosed with hydrocephalus?” Teens across the country began sharing their experiences with hydrocephalus as well as advice for individuals who are newly diagnosed.

Ashley Snyder is a vibrant, positive 18 year old, who was diagnosed with hydrocephalus at 3 years of age. Ashley has undergone three surgeries to revise her shunt. Although Ashley has encountered obstacles from the condition she continues to keep a positive outlook on life. Below, Ashley speaks up about hydrocephalus and gives some friendly advice to her peers:

Ashley Snyder

Hydrocephalus can be a downer.  I was diagnosed with the condition at age three, so I sympathize with all of y’all who are saying, “of course it’s a downer…how can it not be?” and think that I’m stating the obvious.  But, I think it’s all about perspective.  Despite this condition, I find myself happy pretty much all of the time.  I confess to occasionally dancing around the kitchen and singing in the shower.  It’s a classic example of mind over matter.  It is okay to have headaches, to hurt, to feel tired, or maybe even to feel scared sometimes.  But you can’t let all of that consume you.  If you do, you’re robbing yourself of a ton of happiness which you truly deserve.

Take some time to reflect on the good things in your life.  For me I tend to think about a family that’s always there for me no matter what and friends who would do anything for me.  Hydrocephalus seems like only a bad thing sometimes.  But I promise you, it eventually makes you stronger and turns out to be a huge benefit.  Despite all of the challenges all of y’all have faced, you have come out strong.  Be proud of that.  Think of any struggles you have as challenges instead.  I for one never back down from a challenge and I know none of y’all ever do either, so kick some hydrocephalus tail and realize how much you rock.

Try not to worry all the time about what’s going on with you.  I know that’s tough, but it will definitely be a good thing for you.  Worrying burns energy and doesn’t give you anything in return, and who wants to do that?  When life rains, don’t stand there and just get wet.  With positivity on your side, you now have the world’s largest umbrella, and it is absolutely time to dance in the rain.

And most of all, embrace being who you are.  Y’all are such fighters and you fought hard to get where you are, and that’s something to shout about.  On your toughest days, if you just can’t seem to get out of a funk, look at this blog and remember these words: I’m proud of y’all. And y’all should all be extremely proud to be yourselves.

16 Comments for : Ashley Takes Charge of Her Hydrocephalus!
    • Ashley Snyder
    • April 4, 2012
    Reply

    Hey Vincent! I’m so glad you got the chance to read my writing, and even more super grateful that you took the time to respond! I’m glad to hear you’re recovering well, although surgery on Valentine’s Day doesn’t sound too fun. I know recovery is rough sometimes but hang in there! Everyone has things about their appearance they wish they could change, hydrocephalus or not. But I want to challenge you, and any others that read this not to continue doing that. When I look at my scars in the mirror, or imperfections I’ve gained from the disease, I used to think “imperfect” or “ugly” or “not good enough.” Now, I think “survivor,” “stronger,” and “100% beautiful.” You sound like an awesome person with a great outlook, and I hope you continue recovering well! The Hydrocephalus Association is such a great community, and I’m glad you’ve found us! Have a great day, and should you ever need anything, don’t hesitate at all to contact me!

    • Vincent
    • March 30, 2012
    Reply

    I was diagnosed very young too. I am now 30 and recovering from a shunt revision on Valentines Day. You are 100 % right about having a positive attitude about hydrocephalus, because it will bring you down if you dwell on it. I was blessed to grow up with the same group of friends my whole childhood, but I did get teased from time to time for my condition. I still look at myself in the mirror and wish that I looked more normal, but as I’ve gotten older I notice that almost everyone wants to change how they look, so I have learned to embrace the scares. It is nice to know that there are support groups, walks, and other awareness, because I was the only person that I knew of that had hydrocephalus for the first 20 years of my life. I’m glad there are people like you that are making little kids and teenagers know that they are not alone.

    • Ashley Snyder
    • January 23, 2012
    Reply

    Thanks Jeff, I’m so glad you contacted me! And to all of y’all who have also read this and contacted me yay! Love love love getting to talk to y’all!

    • Jeff Davis
    • January 18, 2012
    Reply

    Great article I have a shunt as well.

    • Ashley Snyder
    • December 22, 2011
    Reply

    Hey all! I love seeing how many people respond to anything I put out there, y’all are the BEST people without a doubt. My email is ashleygrace0625@gmail.com should you ever need it, feel free to contact me 🙂 Also Maria, I am 18 and would be happy to talk to your son, but I also know many members of the teens take charge advisory council between ages 14 and 16 that sure would be happy to talk to him as well. I hope everyone is enjoying the holidays and remembering the good things that abound!

    • Erm
    • December 15, 2011
    Reply

    Thanks for the wise words…. Finding little wins is important… Love is necessary… Prayer is comforting… both to give and receive…

    • Vanessa
    • December 14, 2011
    Reply

    Hi Ashley,
    Just noticed your reply. Thank you so much for your kind words. Right now my daughter’s shunt is doing what it’s supposed to do, but I would love to contact you should I ever have any questions. Right now she has her soft spot still, so it’s easy to tell if there are any problems with the shunt, but I’m sure I’ll be more nervous when her soft spot closes and there isn’t such an easy way to tell. She saw her neurosurgeon a week ago and doesn’t need to follow up for 3 months!!! I hope you’re enjoying your holiday season.

    • maria leal
    • December 11, 2011
    Reply

    Hello Ashley, I´m very glad I found your testimony here today.
    I live in Portugal and have a son with a shunt since he was 5 month old. He is now 16 and I´m looking for people of the same average age for him to talk by net (facebook, mail, etc).
    Can tou tell me if you know anyone in the teens that coud be availabe to talk with him?
    Sometimes I feel him very lonely about his condition.
    He is a fabulous boy, with a wonderful sense of humour a full of life and good thinkings like you.

    Thanks

    maria

    • angel
    • November 28, 2011
    Reply

    Hey ashley, i was diagnosed with Hydrocephalus at 4 week old.im glad that their r others out there with my condition too.

    • Ashley Snyder
    • November 23, 2011
    Reply

    hey Ashley girl! I would love to talk to you any time you need it, I will be sending an email your way very soon, and will talk any time! Linda, if you ever would like to talk, I’m here for you too! Your son seems totally awesome and I’m so proud of the progress he has made, and so grateful for your kind comments. And Nicole, you are such a sweetheart! I’m so excited to be working with you on TTC! I hope all of y’all have had a blessed thanksgiving!

    • Ashley S.
    • November 23, 2011
    Reply

    Hey Ashley!
    Thanks for the encouraging post! I am new to this site. I was 12 whe i was diagnosed with Hydrocephalus. Drs. Suspect that ive had it since i was born due to me being born premature. I was wondering if you would like to swap email addresses. I am looking for people/and to make friends to talk to about this. I have come to accept my condition, but still feel so isolated at times like noone understands me or what i go thru. my email address is ashleystoffer@centurylink.net

    • Linda
    • November 20, 2011
    Reply

    Ashley – thanks for the inspiring message! My son was diagnosed with hydrocephalus at 8 years of age. He is 13 now and has only had to have the initial surgery – we have been very lucky. It is scary sometimes to think of the challenges that he has ahead of him but he tends to not think about it the majority of the time. He is an honors student, in the band, and very well liked among his peers. You give me hope that this will be his future and that he will always be able to find the bright side of life. He does have headaches at times but can deal with those. Thanks for giving me hope 🙂

    • Ashley Snyder
    • November 16, 2011
    Reply

    Vanessa you are too sweet to leave such a wonderful comment! I’m glad to be able to share whatever I’ve picked up along the way if it can be of help to anyone. Your daughter will without a doubt grow up to be exactly the kind of young lady you want her to be able to be with supportive parents like you! And I wanted to say that any time you need someone to talk to please don’t hesitate to contact me. If you’re having a day where you’re particularly scared for your daughter or just need some support I would love nothing more than the chance to talk to you and maybe spread a little sunshine! Thank you again for such kind words, your daughter is truly an inspiration. God bless!

    • nicole padron
    • November 16, 2011
    Reply

    wow ashley this article is so inspiring and well written. it amazes me how optimistic you are! youve motivated me to really start looking at the bright side of things. i really needed this bounceback. thank you so much(: i am so happy to have you on council board and cant wait to start working with you!(:

    • Vanessa
    • November 15, 2011
    Reply

    Thank you for your wonderful post. Although I do not have hydrocephalus, my daughter does. She’s currently 6.5 months old (4 months corrected age). She was a 29 week preemie who had a grade III IVH, which led to the hydrocephalus and need for a shunt. She was shunted at 4 weeks old (33 weeks gestational age), that shunt became infected, and it had to be externalized while the infection cleared. Her shunt was then re-internalized and she had a revision this past September. We were expecting the revision though because the neurosurgeon told us in babies that little, there’s a 50/50 chance of them needing a revision in the first 3 months. Aside from a little stiffness in her arms, which we’re working on in PT and OT, she’s doing great. It’s so nice to hear your story and see a young woman who is beautiful, intelligent, and vibrant; all things I want for my own daughter. Thank you for your positive message.

    • Samantha Mills
    • November 15, 2011
    Reply

    I have had Hydrocephalus since i was born. I have had over 200 brain surgeries because of it. I had to have open heart surgery because i ended up getting a blood clot from the VA shunt, So they put the VP shunt back in. It has been very tough going through all of this but i get through it. I couldn’t do it without the support of my family and friends.

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