{"id":39662,"date":"2025-10-23T13:06:54","date_gmt":"2025-10-23T17:06:54","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?p=39662"},"modified":"2025-10-23T13:08:06","modified_gmt":"2025-10-23T17:08:06","slug":"growing-up-with-hydrocephalus","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/growing-up-with-hydrocephalus\/","title":{"rendered":"Growing Up with Hydrocephalus: Finding My Own Timeline"},"content":{"rendered":"

By: Jenna<\/span>\u00a0Sanchez<\/strong><\/p>\n

Growing Up with Hydrocephalus: Dreams That Kept Changing<\/h2>\n

When I was four, I wanted to be a neurosurgeon. Over the years, that dream shifted\u2014first to nurse practitioner, then speech pathologist, anesthesiologist, maybe even an OB-GYN.<\/span><\/p>\n

But every time someone asked, <\/span>\u201cWhat do you want to be when you grow up?\u201d<\/span><\/i> something inside me felt off. I\u2019d give an answer, because those were all things I truly would love to do. Yet part of me couldn\u2019t picture getting older or imagine what living with hydrocephalus would look like as I aged.<\/span><\/p>\n

Facing the Unknown with Hydrocephalus<\/h2>\n

I was told that hydrocephalus<\/a> usually \u201ccalms down\u201d in your twenties. As a child, that felt light-years away. And since I\u2019d always been an outlier in the data, I wondered\u2014could I even trust those statistics? What if this never really ends?<\/span><\/p>\n

Now, in my twenties, I have a few more answers\u2014though the questions keep changing. The number of shunt revisions<\/a> I\u2019ve needed has decreased, partly because I\u2019m older and also have a different type of shunt. And no, it never truly ends. But that leaves me asking: What does this mean for me as a functioning adult? Where am I supposed to go from here?<\/span><\/p>\n

When \u201cYou Can Do Anything\u201d Isn\u2019t That Simple<\/h2>\n

When we\u2019re little, most of us hear, <\/span>\u201cYou can do anything you set your mind to.\u201d<\/span><\/i> But what happens when your mind is set, but your body isn\u2019t?<\/span><\/p>\n

That question is often met with silence. People want to give an answer because they wish there was one. It\u2019s painful to tell a child, \u201cThere are things you may not be able to do.\u201d<\/span><\/p>\n

I wish someone had sat me down and had a realistic conversation about what life with hydrocephalus would look like long-term. When you\u2019re young, your parents want to protect you from anything scary or painful \u2014 and hydrocephalus is both. Procedures aren\u2019t usually explained to the child going through them. It\u2019s a difficult conversation to have.\u00a0<\/span><\/p>\n

When you\u2019re told the same encouraging messages as every other kid, but deep down you know you\u2019re not like every other kid, there\u2019s a disconnect. You don\u2019t want pity; you just want people to acknowledge that difference and see you.<\/span><\/p>\n

Redefining \u201cOn Time\u201d While Living with Hydrocephalus<\/h2>\n

Personally, I\u2019ve been pivoting for years. I thought I would have graduated on time, gone to college, and followed that familiar timeline we all grow up hearing: graduate high school<\/a> by 18, earn a degree in four years, get a nine-to-five, and stay an active member of society.<\/span><\/p>\n

That mindset is rigid\u2014and a little ableist. Not all of us finish on this timeline.<\/span><\/p>\n

In a good school year, I was absent for 60 days. It\u2019s impossible to keep up when there are so many gaps in your education. So now I ask myself: <\/span>What can I realistically do?<\/span><\/i><\/p>\n

I\u2019m still figuring that out. I\u2019m 24. I finally finished my high school credits last year, and now I\u2019m reapplying to colleges<\/a>. It\u2019s exciting, don\u2019t get me wrong. I\u2019m over a year out from my last surgery and am about to get my driver\u2019s license.<\/span><\/p>\n

And that\u2019s when the \u201ctimeline\u201d hits me. The <\/span>shoulds<\/span><\/i> flood in: I <\/span>should<\/span><\/i> have done this at 16. I <\/span>should<\/span><\/i> have graduated years ago. I <\/span>should<\/span><\/i> be further along by now.\u00a0<\/span><\/p>\n

The shame and guilt creep in, and I get frustrated with my younger self for doing things \u201cwrong.\u201d<\/span><\/p>\n

But it\u2019s easy to forget what it was like to be that version of yourself\u2014the one just trying to survive. It\u2019s easy to compare yourself to the majority, but living with hydrocephalus means your path will always look a little different.<\/span><\/p>\n

And that\u2019s okay. It\u2019s not the timeline that defines you\u2014it\u2019s the fact that you keep going.<\/span><\/p>\n\r\n

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