Mom holding baby son while standing in kitchen near sink

A Letter of Love to My Son With Hydrocephalus

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My Sweet Davey,

At the time I’m writing this letter you are 2 years old. You have endured more in your 2 years than what seems most people do in a lifetime. You have survived seven brain surgeries and a horrible infection called bacterial meningitis. Davey, you are my hero and don’t you ever forget it.

The day I was told you had hydrocephalus you were almost 14 months old. My heart felt like it was breaking, not because I felt there was anything wrong with you, but because I was afraid you would have to endure pain. I would trade places with you in an instant if it meant you could be pain-free. Those aren’t just words for fluff — I mean them with every ounce of my being.

For all the years I live, I don’t think I’ll ever forget the day we almost lost you. It brings me to tears even now, almost a year later. Davey, I want you to know I will do everything in my power to make sure that never happens again. I will never allow another doctor or surgeon to ignore my concerns when I know something is wrong. I am so, so sorry.

You, my precious son, are nothing short of my superhero. You have fought and fought and continue to fight every day. Because of you, I’ve learned the meaning of true perseverance and true strength. To me, you are the embodiment of what it means to be a hero. I hope you always remember that.

Last, but certainly not least, I want you to know you will never ever have to walk this road alone. I am walking beside you, and I am honored to do so. I will advocate for you every step of the way. I will laugh with you and I will cry with you. You will leave my arms to go into the hands of the most capable neurosurgeon there is, and my heart with break every single time. There may be times you doubt the fairness of this diagnosis, and you can be frustrated with the lack of treatment options, or you can yell and scream and cry if you need to — but never, ever doubt my love for you.

All my love,
Mommy

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What I Wish I Could’ve Told My Parents When I Was Diagnosed With Hydrocephalus

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I was born with congenital hydrocephalus, and had a shunt put in when I was less than 2 months old. I grew up with this condition being hidden from me, only uncovering parts of the puzzle over time as I grew up. At the point of diagnosis and intervention, I could not have spoken up for myself. But with the gift of hindsight, this is what I wish I could have said.

Dear Parents,

While it will hurt that you cannot intervene, please don’t try to fix me.

I know you wish I could run faster, draw pictures with a higher level of technical skill, and walk with my feet flat on the ground instead of tipping my toes. I wish I could do all these things, too.

But if you choose to try to fix me, through numerous extra operations, various physical therapies, essential oil rubs and even trying a diet-based intervention measure, you’ll be attempting the impossible. At present, hydrocephalus is treatable; that’s why you opted for the shunt. That gives me a chance to live as a regular mainstream child. Thank you. But it is not curable – this means your various intervention measures will be implemented in vain, and you will be disappointed when you realize this.

So don’t try to fix me! Instead, love me as any other parent would love their child.

Be honest with me about the details of my condition in an age-appropriate manner.

As I grow up, I will gradually realize that part of me is different from other kids. Yes, I know all of us are different in our own respective ways, but mine’s a little more noticeable when people observe me enough.

I note your good intentions by not telling me that I am different – perhaps it’s the fear that I would place a stigma on myself that you are guarding against. Or perhaps you are refraining from “labeling” me before society does.

But the difference between me and others’ conditions is this – they might have totally visible conditions, like cancer which usually manifests in hair loss, or a broken leg, validated by a cast. The visible nature of the condition leads people to have a degree of understanding. It is easier to understand and empathize with things we can see.

While I hope every day that my differences which are hidden on first sight might not be picked up, I still need to be prepared to handle the occasion if they do. I know you’re afraid I wouldn’t understand – and you’re right, because it will take time. Having said that, my peers will probably understand as little (or as much) as I do – that’s why we need to put this into age-appropriate vocabulary.

Please help me to help myself!

I’m giving you the benefit of the doubt that you don’t know how to explain such a complex condition to me, which is OK – not many people do. But that’s why we need to ask for help from others, or rely on our own creativity.

I wouldn’t limit your sources of help or your creativity, but I suggest something like this:

Tell me how when I was born there was too much water (cerebrospinal fluid) in my brain, like a cup filled with water that is about to overflow. Because it is trying so hard not to overflow, and my brain is trying to keep it all in, it hurts my brain. That’s why we need to help remove the water. If we have an overflowing cup, we drink the water. In this case, we put in a straw (shunt) so that it can divert the water (cerebrospinal fluid) out of the overflowing cup (my brain) into other spaces.

Love,

Me

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Why I Declared My Hydrocephalus at a Job Interview

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I recently applied for a teaching aide position at a school for special education. The process was relatively smooth-sailing, since I had a friend who was working there – not only was she my character reference but also my middleman in making enquiries about the school, job scope and application process. The decision to enter special education wasn’t difficult, having had volunteer experiences in interacting with this community via my church’s ministry. It was with a certain level of confidence that I breezed through my applications, until I encountered the section where I had to make my declarations.

“Have you ever suffered, or are suffering from any medical condition, illness, disease or physical impairment?”

I stared at that statement, heart skipping a beat – I’ve written before about my experiences with congenital hydrocephalus. This would be the first time I’d faced the decision of having to make this declaration, with full understanding of its medical implications. I never found myself declaring this on prior occasion because while I was aware of how hydrocephalus had manifested in my life, I had only recently discovered it was a medical condition with documented statistics. Prior to this, while I had some understanding of the mechanics of this condition, I always assumed it was a perinatal fluke. Thus, the lack of declaration was less a decision to “hide my flaws,” and more because I didn’t realize it was a medical condition to be declared.

This may surprise you, but I was keen, and – dare I say it – excited to make this declaration. I knew in doing so I was opening myself up to potential blatant and undeserved discrimination, but I figured should it happen, that would have said volumes more about the organization I was applying for, than my own abilities. In no order, here’s the reasons behind my peculiar enthusiasm:

1. Academic criteria and volunteer portfolio

I had met the academic requirements as stated on the webpage that detailed the criteria for application. There had been no mention I would be required to do any extreme physical activity, where having hydrocephalus would put me at significant disadvantage – such as competitive sports. To my best knowledge of the application criteria, I had more than met the requirements. Furthermore, my experiences of volunteering for my special needs church ministry would have been indicative of my exposure in interacting with this community. Although unspoken, part of me wanted to declare this due to a fierce resolve to prove in spite of congenital hydrocephalus, I can, if given sufficient understanding and opportunity, be as capable as my peers without it.

2. My maiden opportunity at this declaration

The journey of realizing hydrocephalus was a documented medical condition had been like putting together parts of a detective mystery. My well-intentioned parents had kept this from me since childhood – they still have yet to approach me on this – failing to realize not having age-appropriate words to describe this condition was emotionally detrimental to my childhood because I had many experiences of feeling inadequately less-than.

Hence, having the opportunity and autonomy to make this medical declaration was oddly empowering – I could finally take a stand to disclose as much or as little about the condition as I deemed fit, without a third party making such decisions for me. Weird as it sounds, I think it’s something one has to experience to understand how it feels.

3. For understanding – to minimize speculation

In various parts of my life, strangely more in adulthood, I have had people try to speculate what might be “wrong” with me or the condition I might be coping with. While I empathize with the awkwardness they might face when encountering my physical limitations, I didn’t, and still don’t think, it is nice for people to make speculations on matters they don’t know.

At the school where I previously taught, I once overheard a conversation where a colleague described me to another as “the one who limps.” On another occasion, a different colleague made snarky remarks on how, because of the way I walked, she was “concerned” I would be “victimized” by one of the meaner students we both taught. In honesty, I felt that comment was poorly veiled false empathy because she seemed to harp more on how I was different, than why she was concerned for me.

It was hence a natural decision to put forth a declaration to the relevant authorities – so the people for whom this information is essential, can make appropriate decisions about my job scope. It would also be beneficial to have someone at work know the truth of my condition, rather than to have everyone speculate about things they were unfamiliar with.

Having calculated the risks, I made the declaration for my congenital hydrocephalus, complete with the medical insurance letter to validate coverage for it.

While I maintain such decisions should be made with extreme caution, I think in this case it worked out to my advantage. My interviewer, the school principal, said she appreciated my upfront honesty on the matter. With this knowledge, she would be keen to place me in areas of aesthetics involvement, rather than sports co-curricular activities.

I have yet to receive a confirmed offer for the job, in part owing to the relevant paperwork and administrative matters relating to my previous work in mainstream education. Watch this space for updates!

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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6 Things I Wish I Could Have Told My Mom the Day I Was Born With Hydrocephalus and Goldenhar Syndrome

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Monday, April 2, 1973

Dear Mom,

It’s only been a few hours after my birth. I know you are tired in a wakeful sort of way after over 12 hours of labor. The doctors “didn’t know” my skull would be so swollen with fluid because of hydrocephalus. You knew from your mother’s instinct listening to your own body — but they didn’t pay attention.

I know your body hurts from that long labor and it’s hard to get comfortable. The doctors have done everything and nothing trying to figure this “surprise.” They’re telling you everything now as they educate themselves on my disability. Now they talk to you as though you could understand their lingo. They throw out diagnoses and symptoms like “Goldenhar syndrome,” and “hemifacial macrosomia.” These words confuse you with worry because they tell you nothing useful to you as a mom getting to know her child.

Someone—not a doctor—steps into your room as Dad is sitting with you and gives you the first news you can understand. “You don’t have to keep her. You can place her in an institution.” Those words jolted you out of the numbness that was settling over you as you replied, “She’s not a dress we can return to the
store. She is our daughter. We will do what needs to be done.” And so you did.

Some 40 years after the fact, and having heard that and many stories about the first few years of my life, there are a few things I wish I could have said to you then. Some of them you instinctively knew; some we learned together.

1. Doctors can guide us, but they can’t dictate my future.
I know you don’t know what my future will be like at this point. I know you can’t anticipate anything. But neither can I. Then and now I can only know what I know today. Having met few people with Goldenhar and hydrocephalus, I have little to compare my life to. All I know is today I’m fine — and that’s important to hope for in those first few days, even as you are concerned for my future.

2. Don’t forget my “real life.” I know you want to fix everything, out of concern for the physical, social and emotional ramifications of my disability. But I can’t wait to start living after all the medical procedures are completed. I can’t wait for my doctors to get it right. Laugh with me, enjoy the family, and enjoy yourself. Enjoying the time away from my disability is essential to helping me, I promise. I need to be the kid I am, not a walking medical condition.

3. Accept me as I am.
I was your fifth child. You expected that raising me would be a cakewalk. Instead you will find many things to be different, not just my disability and the procedures and apparatus associated with it. I learn and respond to things differently. You will be surprised by my reactions. My disability will shape how I see things, approach them and react. Listen to me and be open to learning new things with me.

4. I know you worry about other people trying to marginalize me. You can help by reminding me how wrong they are. Remind me that I am smart, kind and capable of anything I want to do. Remind me it’s OK to be different but equal. I’m going to need those reminders. With your support, I will be able to stand up to them and for myself.

5. I love you, and I am grateful for how my life turned out thanks to you. Everything you will do, you will do with my well-being in mind. I may not agree with it at times, because I have a different perspective as the one born with a disability. But I don’t regret a thing. Without the successes and failures and detours we experienced together, I would not be who I am today — and today I’m OK.

6. I am sorry for your worry in the beginning. I worry for you because you never asked for this. You know how things could be different for me without this, and that causes you grief even as you do everything you can to be positive and help me. I hope you see what I see — it was worth it in the end.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! Check out our Submit a Story page for more about our submission guidelines.

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Tillery with her gait trainer.

The Day I Took My Daughter Out With Her Braces and Gait Trainer

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Alana's daughter with her yellow gait trainer and pink shoes
Alana’s daughter, Tillery.

We’ve tended to keep our physical therapy at home. The leg braces and gait trainer that assist my daughter in standing and walking are usually replaced with cute pink princess shoes for “going out.” Recently, as she’s started doing more standing and walking, the equipment has left our home and started traveling with her.

This week, something amazing happened.

I made a decision to take her “as she is” to pick up my son from his school. We arrived early to allow time for her to make her way from the parking lot to the classroom. She had her braces on her legs and her bright yellow gait trainer for support. She would take a few steps and then stop to talk about the wind in her hair or the birds she could hear in the trees. Slowly, slowly, she got all the way to the main doors. There were a few others approaching the doors with us and they all smiled and patiently waited while Tillery worked her way through the opening and into the hallway.

As she proceeded down the hall, parents and children encouraged her and cheered her on as she headed for her brother’s classroom. It warmed my heart to hear the support and see people genuinely happy to see her getting around. My fears had been that people would gawk at her and kids would make fun, but instead, all I saw was love.

Tillery with her gait trainer.
Tillery with her gait trainer.

Leaving the school, another mother told me that her daughter used to have a gait trainer. She said her daughter had hydrocephalus and a VP shunt (just like Tillery!) and that it took her a long time to get the hang of walking. She encouraged me by sharing that now her daughter is now 5 years old and well adjusted. You wouldn’t know the obstacles she has overcome. I really appreciated her sharing her daughter’s story and was thinking of how encouraging everyone had been as we made our way out of the school.

Tillery walked all the way to the car and I got the kids buckled into their seats and the gait trainer put back in the back. As I looked back at the school, I saw the mother who told me about her daughter coming out with her child. I was amazed to see her daughter was a child I had recently spent time with on a field trip. She was right, I never would have known the struggles she faced earlier in life. I smiled as I thought of my own daughter and the obstacles she has overcome that people around her would never know.

The day I took my daughter out with her braces and gait trainer, I embraced the life we are living. I accepted that this is what it takes to build strength and make advancements.

In a world where we sometimes feel different, I made our “normal,” normal.

Follow this journey on Hope Til There’s a Cure

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To People Who Ask How I Can Have Such a Good Attitude With Chronic Pain

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Over the past 12 years of my devastating diagnosis of irreversible nerve pain that will in fact get worse with every additional surgery I have for hydrocephalus, I’ve gotten this question a lot. “How can you have such a good attitude when you have so much stacked against you?”

I think the first thing I would say to that is that it’s a multifaceted question. The first thing I would say is I am human, so no, I’m not always happy. I try to be in a good mood most of the time because the facts are the facts: “I’m not going to get any better, and with every additional surgery, I’m only going to get worse.” I accepted that because I had to, not because I wanted to. Because one day when I realized my energy level was about a third what it used to be, I sat there and thought to myself, “Is this really what you want to waste what little energy you now have on? Something that will never change, no matter how mad you make yourself? Or do you want to focus your energy on making yourself the best you can be, mentally?”

I believe happiness is a choice. Just like anything else, it takes practice. Lots of it. You aren’t just born happy. I think it takes disappointment to prove that happiness exists and that you yourself can attain it. I can’t change the cards I’ve been dealt, so why not just turn them into something new? It’s no different than turning a six into a nine. You just need to shake up the cards you’ve been dealt and deal them in a new way. A better way. I have no reason to be unhappy.

Look at my life — I was adopted by the most loving, giving couple in the world. I gained four amazing siblings and an amazing extended family. I have four parents who love me! What is there to be upset about?! Yes, my health situation isn’t fantastic, or even good in most peoples’ minds, but if that’s the only thing wrong with me, I will celebrate, because I’ve gotten through many tougher things in my life!

With health problems, you don’t get to choose a lot of things in life. Your life’s plans are chosen for you by your illness, or by your doctor’s schedule. So why not choose to be happy? It’s the one thing you can choose! There is no rhyme or reason to it — you just must make the choice. You have two choices in life: to be happy or not. So why not be happy? There are very few things you can control with a chronic illness. Well, at least most of the time. Of course it’s painful and I would do anything not to have it, but I do. So I do the only thing I can do. I live!

So here’s the short answer. There’s no magic pill that’s going to take my list of problems away. No magic wand. I wish! I made a choice. That’s no different than you making a choice of what color socks you’re going to wear that day. Well, maybe a little different. But it was a choice I felt like I had to make to survive. If you were faced with the choice you had to make to survive and thrive in the world, what would your choice be? You already know what mine is.

woman in purple dress with arm around woman in black dress
Kimi (left) and a friend.

Follow this journey on Blessings In Hydro.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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