What I Wish I Would Have Known After My Daughter’s Spina Bifida Diagnosis

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It’s going to be better, and worse than you expect. But mostly, it’s going to be better.

Amelia smiling holding a model of a brain
Amelia.

I thought my purpose that day was to determine if my child was a boy or a girl. Boy, was I wrong! My daughter Amelia was my third child, and when I headed into my ultrasound at 19 weeks pregnant, my goal was to find out if my child would be Amelia or Gabriel. What I didn’t know, is she would introduce us to a whole new world.

After getting only the most brief information possible from our ultrasound tech, my husband and I nervously walked into the OB’s office several long hours after the news that our baby had spina bifida (SB). This was in 1999, so the information available on the internet was even less reliable than it is today, and I didn’t know enough to know which sources to trust.

My OB greeted us by saying, “I’m so sorry. This is the worst news anyone could ever get.”

Even then, not knowing much more than the fact our child would have issues with her spine and brain, I knew his words were untrue. I could think of so many worse pieces of news, and I was shocked that he lead with that statement.

My daughter is fifteen now, and I feel like I’ve made it through the intense childhood years, when I was learning something new about her diagnosis, her abilities and her care constantly. She’s old enough that I can back up and see our past fifteen years together as including more challenges than I had expected on that January day in 1999, but also more amazing moments than anyone ever told me I could hope for. By far, the amazing ones win.

Amelia has had over seventy surgeries, including more than thirty shunt replacements.  She had a tracheostomy and a feeding tube, and we joke that we’ve seen almost every specialty clinic at our children’s hospital. There have been times when I was overwhelmed by the challenges she’s had to overcome, and the stress I’ve felt while trying to keep the whole family (she has two older sisters and two step-brothers) functioning. I don’t want to imply that these times don’t happen, or even that they’re rare, but this is the side of disability I believe too many people focus on. What I wish I had read about when I got her diagnosis was all of the absolutely amazing times we would have because of her diagnosis.

Amelia with a friend smiling
Amelia.

The diagnosis of spina bifida made me search for a larger community to belong to, and this has been instrumental in my family’s ability to understand the diagnosis, share and receive support and make life-long friends. When I was pregnant I happened to find an internet support group of other women whose children had spina bifida, and we have remained close to this day. They are the first place I go when I need a group that “gets it,” and is there to cheer our accomplishments or help us through the challenges. My local SB group allows my daughter to become friends with others like her who are successful teens and adults, be a mentor to younger kids figuring it all out and find inclusive, exciting opportunities nearby. Beyond our diagnosis-specific network, I’ve been forever inspired and excited by the wider subset of those with disabilities and those who love them.

Facing so many surgeries, especially, has taught my daughter and me to enjoy each success, regardless of the size, as they come. I remember worrying if she would have friends. Now she knows more people than I do when we go out to the grocery store. A visit to the hospital means adding in an extra thirty minutes because Amelia will be stopping to talk to fifteen people in the halls. She stops to tell kids waiting nervously for X-rays or procedures that they’ve got nothing to worry about.

We also know the importance of humor and find it wherever we are. Recently, we celebrated two years without a shunt surgery by making a Jello-mold brain and inviting our friends over.  She gave her g-tube, her hernias and her external ventricular drain (EVD) names. She has light-up casters on the front of her wheelchair so little kids will think it’s cool instead of being scared of it.

Yes, life with a family member with a disability will have challenges. But above the challenges, will be the joy. You will learn more about yourself and others than you could imagine. You will meet inspiring people throughout the disability community, and see through them, and your own child, that we are not judged by what we are given, but by what we do with it.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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When My Child Seems to Be Struggling and I Seem Indifferent, Please Remember This

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red shoes in a wheelchair It’s painful isn’t it? I feel your gaze, and from the corner of my eye I see your facial expression matches what I feel inside every single time. I see the fear as you watch, and I cannot reassure you he won’t fall or that there won’t be tears. I see you look at me, and I bet I look indifferent. I’m sitting holding my phone seemingly engrossed in the latest Facebook drama and unaware to what is playing out before us. I’m not.

I am absolutely gripped by fear because I know he very well may fall. I know this is so hard for him. I know every single thought you are thinking, but I must pretend I’m not even noticing. I must become hardened to the falls and the failed attempts. Yes, my child must fall before he can soar.

It has become my job to sit back and watch my 5-year-old sweat great drops as he hauls his non-working legs up a flight of stairs. I must look away as he tests his limits. I have to pretend and say, “yes, you can climb up into that chair by yourself” while inside I can’t figure out how he would possibly have the physical strength. And when you stand up to catch or help him, I will suddenly be available. Not available to help him through this task, but to stop you.

Yes, it is not easy to see my son work so hard or fall so far, but if you help him he will become reliant on that help. He will learn to be handicapped by his mind, not his body. I must do this because if I don’t, I have disabled my son. Fear and helplessness will paralyze him more than being in a wheelchair.

Last week I made the mistake of limiting my son in an effort to protect him from failure. We were at the doctors office, and he wanted to climb from his wheelchair up onto the exam table. I told him no and lifted him up onto the table myself. After the doctor left and I had transferred him back to his chair, he pointed to the table and said, “Israel, do it.” I started to tell him no because in my mind it was impossible and he would just fall. But I stopped at the look of sheer determination on his face and let him try.

With pure grit and strength he grabbed the plastic top of the exam table and began to pull himself off his wheelchair up the side of the table. Halfway up, he was dangling, and in my mind we had reached the point I was going to catch him mid-fall and place him back in his chair. My hand poised under his backside, but I didn’t touch him. I quietly said, “You can do it.” I waited several endless seconds, and with a burst of strength he dead lifted his body the rest of the way up and into a sitting position. I was completely stunned. My child had just transferred from a child’s wheelchair onto an adult exam table, without handholds or assistance. He just looked at me, grinned and in his emergent English said, “Israel, do it!”

Israel was born with thoracic level spina bifida, which means he has no feeling from the upper waist down. Placed at birth in an orphanage, he was deprived of everything but the basics to live. He had all kinds of medical issues listed, many I had never even heard of. He was listed as a child who would never run, never dance, never walk. A child who would not be able to use the restroom on his own. A boy who was never what I imagined in a son. We picked a child with a diagnosis that might devastate parents. But the reality is this, we did not pick out a child with a true impairment. We did not pick up a child from an orphanage in Eastern Europe who was handicapped in any way that truly mattered. We have chosen a child whose heart beats with love and kindness. We have picked a child whose internal qualities outshine any physical impairment he has. A boy who fights for independence and freedom. We have found a child who was defined by his disability in an orphanage, but when given a family and equipment, has absolutely soared.

Israel’s determination is like nothing I have ever experienced. Tasks and activities that seem impossible, he conquers. He has not backed down from the hard things, and in the five months he has been home, can climb stairs, pop wheelies in his wheelchair and transfer from the floor into his wheelchair unassisted. Every mountain that seems insurmountable is attempted with a face of determination and strength. And as his mother, I’m the one learning to let him try things that seem too hard. In the orphanage he had to fight for every scrap of worth and independence. The very things that seem so devastating about his life have actually shaped him into an incredible child. I’m the one who has had to learn to get out of his way. And it seems ironic that I once feared how he might hold our family back in going places and doing things. Seems like the opposite has occurred, and Israel has taught us not to let things hold us back. He has completely changed our parenting.

israel flexing his arms

So, I ask that when you see my son struggle and I appear cold and indifferent, do not look at me and cringe with judgment. Please look my way and smile. Silently share my fear, and encourage me. Because I am raising a man. A man who needs to fall before he can soar. A man whose character and strength will run deep in his veins and will be obtained through scars, falls and trials. I am raising a man who will get back up, again and again because his mama said he could.

Follow this journey on Ransom for Israel.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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I Didn’t Realize I Had a Disability Until I Was 16

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Before we get into our topic of the day, I need to offer a caveat: This post is based solely on my experience and doesn’t reflect the entire disabled population as a whole. I offer these insights in hopes of helping others who are going through a challenging time that can be jarring and confusing.

I didn’t realize I was disabled until I was 16 years old.

Seriously.

The fact I was born with spina bifida makes that last statement seem completely illogical. But it’s true. Let me explain.

I grew up the youngest of three in the late ’70s in a small town in the Midwest. Since my sisters were both able-bodied and our town was small, I was normally the only person in a wheelchair and braces around. When I was really little, I was able to get around with just braces.

My parents worked hard to treat me just like my other siblings. I had chores around the house and would get in trouble if my assigned tasks weren’t done.

In school I was mainstreamed into a regular classroom and taken out only for short times for physical and occupational therapy. Those were the only times I was treated differently from my classmates. I was also the only disabled student in my kindergarten, elementary and middle school classes.

This was all well and good. It helped me develop friendships that were based on who I was as a person and not on my disability. I was able to develop a thick skin. But there was one drawback I experienced.

It’s a funny thing being a kid. You don’t think much about the future. When you do, sometimes the things you had imagined for yourself turn out differently.

And so it wasn’t until I was 16 and in high school that I realized I had a disability. And there was nothing I could do to ever change that.

Whoa. Heavy stuff.

There was definitely an exact moment when it hit me. And it felt like a ton of bricks (I know this is an overused colloquialism, but, in this case, it’s the truth). In that moment, I froze.

So how did I get through it and come out stronger on the other side? I’m glad you asked:

1. Verbally saying your diagnosis aloud can help you to accept it. Writing it down in a journal can also be cathartic.

2. Seek professional help. This was the best thing I was able to do with the help of my parents. It was also during this time we discovered I had been living with a chemical imbalance, which caused depression for a long time prior to this experience. There’s no shame in seeking outside help.

3. To parents, listen to your child. It may seem strange they’re just now coming to terms with reality, but hearing their words and validating their feelings will go a long way towards healing.

4. Take a day. Again, this realization can be quite jarring. Taking a day to reflect might be a helpful technique. I know for myself that taking a day off school helped me to focus.

You can and will get through this and come out stronger on the other side. I’m pulling for you!

Follow this journey on Be Anxious About Nothing.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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10 ‘Lessons’ I Learned as a Child With Special Needs That I Unlearned as an Adult

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I was born in the mid-1970s with spina bifida and hydrocephalus and all the challenges that go with those conditions. I wasn’t expected to function, and even from Day 1, my mom was told to put me in an institution.

The 10 “lessons” I discuss below were messages or impressions I received from others and internalized for a long time. My process of “unlearning” involved recognizing myself as separate from people’s perceptions of me then realizing my true worth as an individual. I now truly believe what people say about me, good and bad, reflects them, not me.

1. I’m “ugly.”

I may not be the most conventionally beautiful person, but I have never had a higher self-image than I do now. Society has a very limited view of beauty based on the Photoshopped images in magazines. Those of us with disabilities don’t see ourselves represented and are often left feeling less than. I realize now everyone is beautiful, and all negative comments about my appearance are about insecurity and aren’t real.

2. I’m “stupid.”

As a child, I was diagnosed with learning disabilities, attention deficit and visual-perceptual disorders and was told I would never succeed. I now have two bachelor’s degrees and a master’s degree. I’ve been a practicing social worker and am now writing a transformational book for others with disabilities and speaking to groups and organizations about engaging our huge power to change the world for the better.

3. I have to look/act “normal.”

As a child — and still — I’m told to “sit up straight,” “lift my head” and “talk faster.” I have felt very self-conscious about how I present myself. Only recently have I begun to fully accept myself and make self-improvements on my own terms.

4. I’m not meeting the standards.

In school, my reports would always say I was a kind child but never paid attention in class and never handed assignments in on time. No one addressed my needs or helped me to develop effective strategies. In my adult life, when I say I’m sick, it’s interpreted that I’m unable to do any work. When I leave the house or have fun, it’s interpreted as me being completely well. I learned how to handle life while gracefully coping with pain.

5. I’m “not capable.”

No! I am capable of just about anything that’s important to me. For me, first, I believe no one will ever know what a child, or adult, is capable of until they try. Second, some things that seem important for others just don’t matter to me.

6. I need taking care of.

I got coddled as a child because I was sick a lot, even when I wasn’t actually sick. I was pitied for what other people perceived as my struggles but not given quite enough coping skills or life skills in my early years. The result is that when I gained my “independence,” I had none of the skills to go along with it. I eventually learned the skills, but it was so much harder this way.

7. The professionals know best.

No! People know a lot in their area of study or expertise, but they’re not in my shoes. The problem is that some of them haven’t gotten the memo. I have learned it’s best to partner with my professional helpers, give them the information they need to help me, follow their advice if it feels right and communicate with them.

8. My voice doesn’t count.

I remember being left out of so many discussions and meetings that were about me. My mom had to force some people to include me against their will. I have since developed a very strong voice.

9. I’m “entitled.”

When I was younger, I would be so offended if someone refused to help me or didn’t respond as I thought they should. I have learned that everyone has limitations, even if I don’t know them, and people are all deserving of respect. I don’t have to like it, and I can advocate for change, but if I rant and rave, pull a “poor me” act or ever dare to be mean to someone because I’m upset, I will never be respected.

10. I’ll never…

When I was born I was never supposed to survive, walk, talk, learn or live a normal life. Having defied all expectations, I now know the only things I’ll never do are things I choose not to attempt.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? 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.

Lead photo source: Thinkstock Images

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When My Son Asked 'Why Did I Get Spina Bifida?'

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Last week my son came up to me and snuggled up on the couch to cuddle. Usually when he does something like that, it means that he’s done something wrong and is trying to be cute to keep out of trouble, or he wants something. Bracing myself, I asked him point-blank what he wanted.

“Mom,” he asked shyly, “why did I get spina bifida?”

Kiersten's son -- a boy in a blue shirt with backpack

Cue my heart stopping. When he was younger, we had explained why he had to go to his yearly neurosurgeon appointments as an extra check-up from a surgery he had as a baby. He knows he was born with spina bifida, and that as a result he has a scar on his back and a trip to Albany every year to see how he’s growing. He’s a smart kid, precocious in some ways, and knows that health problems often have a cause.

Stalling, I asked him why he wanted to know. “Because no one in my class has it. And Sissy doesn’t either. I’m the only one. How did that happen?”

How do you explain to a 7-year-old child that your body’s inability to absorb nutrients well means that he didn’t get the folic acid he needed while in utero? How do you explain the guilt you still feel because he ended up having something that made him different from his classmates, something that cannot be hidden or changed, and that will follow him the rest of his life? How do you explain why his sister doesn’t have the same condition, even though they have the same sacral dimple, because his diagnosis made it so you knew to take extra folic acid so that she wouldn’t have it, too? We’re a family of skeptics, and secular humanists to boot. Trying to explain the science behind it all, no matter how smart he was, would be a monumental task.

“Buddy,” I said, hoping for the words, “You know how Mommy had you in her tummy before you were born, right? And how babies get their food in mommy’s womb while growing?”

“Yeah, through the ‘bilical cord’.”

“Well, even if the mommy eats all the right foods and takes her vitamins, some mommies have a hard time getting the right amount of vitamins in their body to help their baby grow up healthy. That’s what happened when you were in Mommy. I tried everything I could, and while you weren’t as sick as some babies, you ended up having it.”

“Oh,” he replied. He seemed to get it, then asked a follow up question. “How come Sissy didn’t get it?”

Deep breath in, Mom. “Well, because we learned from you and what happened while you were in Mommy’s tummy. We knew that when Sissy was in Mommy’s tummy that I would have to take extra medicine to make sure she didn’t have it too. So in a way, you were being a great big brother even before she came along.”

“Oh. OK, Mom. Can we play with the rubber stamps now?”

The Mighty is asking the following: How would you describe disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. 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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Why I Have a Sense of Humor About My Disability

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Growing up with any disability from birth can be a challenge and present its own unique experiences. I have spina bifida, a condition where a person is born with an underdeveloped and exposed spinal cord. It can range from very mild to very severe, and it seldom affects two people in the exact same way. I am able to walk, but I sort of look like a drunken penguin if I’m not using my wheelchair. My sister and one of her friends still occasionally enjoy calling me Howard the Duck. While any disability is to be taken seriously, I have learned that it is also healthy to have a sense of humor about things, and just go with it.

There are two funny experiences from my childhood that still make me laugh. The first occurred when I was 8 and in the hospital for something to do with my feet, but I can’t honestly recall what. That’s a fun little side effect of frequent doctor visits and hospital stays — sometimes you forget what you were in for. Anyway, I had banded together with an older kid because he and I were the only patients in the unit at that time. One day, while talking in his room, he was randomly fiddling with his bed phone and we suddenly heard the distinct static-like “ksssssh” sound over the intercom. After staring at each other for a few seconds, we realized we had accidentally hacked in to the hospital paging system. We gave it a few more tries and were amazingly able to get back in after figuring out what to push. Not our brightest moment for sure, but when you are that bored, even bad ideas start to look like a lot of fun. We spent close to an hour paging people to random areas of the hospital and quickly hanging up. Hospital staff were eventually able to figure out the culprits, and we of course got a good talking to, but it’s still a fond memory. Major props to the hospital staff for never ratting us out to our parents on that one!

The second is from the summer between 8th and 9th grade. I was riding my bike across a road in a rainstorm. I thought I had more room to get across the road, but ended up getting smoked by a Mazda that was passing by. My bike was totaled, but I remained relatively unharmed aside from some missing elbow skin. Due to the legendary Minnesota Nice, the lady who hit me was even kind enough to give me a ride home. My mom still feels bad about not believing me when I told her what had happened, because I was basically fine. The funny part came later in the afternoon when a local cop showed up at the door. They had received a call from a witness saying, “The ‘crippled’ kid in town got hit by a car and then they all disappeared!” Unbeknownst to myself or anyone else, the police had been frantically searching the town for me and finally spotted my bike by the garage. The officer wouldn’t leave until talking with me, and of course, when he saw me walking (penguin alert!) he got very upset. He calmed down when he spoke to my dad and we assured him that was unrelated. It still makes me smile.

Adulthood has continued to bring some hilarious moments. Years ago, after a late shift at work, I went out to meet some people for a birthday. I didn’t drink that night and left early. As I was driving away, I got pulled over by an officer who’d seen me leaving the bar. When I explained I was sober, he asked if I could get out and walk in a straight line for him, and then I could go. I explained that, “Well, no, actually I can’t.” When he inquired further, I pulled up my pant leg and showed him my leg brace. He stared at my leg for a minute as his face got red. Then he turned to me and said, “OK, you have a nice day.” Then he hurried to his car and sped away before I could even turn my truck back on. Apparently I’d embarrassed him, but it gave me a good chuckle.

Drunk people are often a great source of awkward or funny moments, because, well, alcohol. I was out one night with one of my good friends. We had just sat down with our drinks and a college girl came stumbling up to us. We all engaged in typical bar chatter for a few minutes, before she started staring at me, then at my chair, and finally coming back to me. I could see my friend grinning but tried to ignore him. Finally, the drunk girl looked at me and said, “How long have you been a paralegal?” Clearly she was going for paraplegic, but botched it. I sat there stunned for a second, and then almost fell over backwards in my chair from trying to contain my laughter while my buddy roared so loud that half of the place stopped to stare at us. I explained my situation, and then she mercifully left us alone.

Another moment that sticks clearly in my memory is from years ago, when my oldest friend and I took a road trip to Colorado and Utah. We had gone to the Denver Zoo one afternoon on a whim, and I paid my admission first. After I got my change, she waved my friend through and said, “And your helper gets in for free!” We both stared at her blankly, realizing her unfortunate assumption. After a few seconds, I quickly tossed my backpack to him, hoping he’d play along, and said “Thanks!” We went in before anyone could question us. He and I had a great afternoon spying on animals and eating over-priced food, and anytime a zoo employee passed we’d jokingly make it look like he was helping me with something.

As I said, disabilities are certainly serious and can be a great source of worry, sadness, pain, and a general “Why me?” feeling at times. But at the same time, they make me and countless others who we are. I could probably fill a novel with the random experiences I’ve had. Everyone out there has their own funny stories, and they should be celebrated and embraced as just a part of the experience. It’s OK to laugh.

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.

Lead photo source: Thinkstock Images

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