What It’s Like Being a Woman with Cerebral Palsy Seeking Birth Control

Living Life with CP

A month ago, just shy of my boyfriend and I celebrating our one-year anniversary, we went together to an OB-GYN appointment — this is because we’re in the process of trying to find relief for some pretty intense vaginal pain that I’m having (and have had since puberty, but that’s a post for another day) that has stopped us from being sexually active.

At this point we’ve tried a few things — creams, some pills — but I admit that I was dragging my feet and extremely fearful of pregnancy. No matter how careful my boyfriend was being, I wanted to take some responsibility, too, and at the time of this appointment, it appeared we had made some progress managing my pain.

So I took the plunge and asked my doctor for birth control. I had done a lot of research about different methods, how they worked, how effective they were, what they cost, etc. As a college student, I knew the pill would never be an option for me due to my schedule always being so different, IUDs were not even a thought — as you can imagine — and I was against the depo shot for a number of reasons that any Google search will tell you. That left me with two options: A rod implant in my arm, and a patch. My heart was set on the implant but my insurance would not cover it, even as a treatment method. So, the only other option was the patch — five days from now, I’ll begin my second month on the patch.

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My OB-GYN doesn’t really focus on my disability too much, and to be honest I haven’t decided yet if this is a blessing or a curse. But when I expressed my interest in the patch, he gave me the standard run-down about how the patch works, how to use it, and what women typically experience. I haven’t had too many bad symptoms that lasted more than a few days, like swollen ankles, besides some nausea and swelling in my breasts that have yet to even out. It is now, during my off week — the week I’m supposed to begin my period — that I’ve started to have some problems.

Birth control message boards disappointing

I’ve been digging around the internet, and I’ve found other women who had similar issues that they’ve worked out themselves. But I’ve not found what a woman with my condition experiences while on any kind of birth control, much less my own! And the answers my research has pulled up have been disappointing. Five different websites, including a message board, all said basically the same thing about women with CP and birth control:

  • We’re not sexually active
  • The pill is generally not something we seek because it’s the most difficult
  • We’re seeking birth control to manage something

Aside from a few message board comments, and from what I’ve heard from people I know with CP who have been on birth control, I did not find one thing discussing how birth control affects women with CP who are trying to be sexually active and protected.

This speaks volumes about how we perceive people with disabilities in our society. We’re capable of being sexual beings, too. We deserve to know what a medicine will do to our body from the perspective of women who have what we have and are taking what we take, and not by what able-bodied women experience.

My experience is not theirs, because my body is not like theirs.

Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.



To Parents of Children With Cerebral Palsy, From an Adult With CP

Karin with her parents, age 4.

Dear parents of kids with cerebral palsy,

Thirty-something years ago, my parents were where you are now — raising me, their daughter with spastic quadriplegia cerebral palsy. I was blessed with loving parents, who fought for me to have equal opportunities in school and in life, and told me that I could accomplish anything I set my mind to doing. They also made some mistakes, mostly out of fear and their own internal struggles to accept my disability. But through it all, they only wanted what they saw as the best for me.

I grew up to be a relatively healthy and well-adjusted adult, and have lived independently, with the help of personal care assistants, for over 20 years. Although it’s not always easy, I live life on my own terms, and I wouldn’t trade that for anything.

I do my best to be a good example, and help young people with disabilities and their parents to see what is possible. Here are eight ideas and suggestions, based on my own experiences, for how to raise a happy and healthy child with cerebral palsy and give them the best possible opportunities in life.

1. Don’t believe everything the doctors say.

When I was diagnosed with cerebral palsy at 6 months old, the doctor told my mother I would never walk, speak, or feed myself, and I would probably have severe intellectual delays. He suggested that she place me in an institution. She refused to accept that, and instead devoted her life to helping me reach my full potential. You should do the same. Cerebral palsy is different in each person, but if you’ve been given a doom-and-gloom scenario, don’t believe it. Give your child a chance.

Karin at music therapy, age 3.
Karin at music therapy, age 3.

2. Let go of grief and see the possibilities.

I understand that you may be going through a grieving process surrounding your child’s condition. You are mourning what might have been, and I don’t want to discount your feelings. However, if you let that grief drive your decisions, you’ll only be doing a disservice to yourself and your child. It’s important to realize that our perceptions of what human abilities should be are often based on societal expectations. We expect humans to move, behave, and think in certain ways, and when they don’t, we label it as “other.” We see it as negative. We shouldn’t. It’s just different, and different isn’t necessarily bad.

Your child will have many abilities. Your child will do many of the same things other kids do, just in a different way. Your child could become a Paralympic athlete, or the President, or the next Steve Jobs. Or not. Many kids with cerebral palsy grow up to be ordinary adults with ordinary jobs and lives, just like kids without cerebral palsy. Don’t give up on your dreams for your child just because of cerebral palsy.

Karin horseback riding.
Karin horseback riding.

3. Don’t try to “fix” your child with cerebral palsy.

When we humans are faced with disability, our first thought is often, “How can I fix it?” We don’t want others to “suffer,” and some conditions can be painful or perceived as limiting. However, if we look at disability from a social standpoint, many of the problems it causes are actually due to lack of societal acceptance, such as buildings that are poorly designed for people who don’t walk, and inadequate funding for services and technology. Cerebral palsy cannot be fixed, but these problems can be.

While physical and occupational therapies are great in moderation, too much focus on them can be harmful to a child’s psyche. For me, the best therapies involved fun activities that naturally develop the body, such as horseback riding, dancing, and sports. Let your child do the same things that other kids do, and they’ll gain new skills and abilities.

From a child’s perspective, cerebral palsy is not inherently bad. Nothing is “wrong” with them until someone else tells them so. Don’t go chasing after every surgery or therapy or experimental treatment in the hope that it will make your child “normal.” The only thing that will accomplish is making the child feel bad for not being good enough. Your child is good enough as he or she is!

4. Foster your child’s intellectual development.

Karin as a student at Stanford University.
Karin as a student at Stanford University.

My mom put a lot of time and energy into making sure I got a great education, long before I started school. She read to me every night, and as a result I could read on my own before I was 3. Learning to read so early set me up for success in life — I attended Stanford University, and now have a Master’s degree. We can develop our minds at a time when children with typical abilities are focused on developing their bodies. Don’t miss this opportunity.

I was mainstreamed into a regular classroom beginning in preschool. I believe that inclusion is essential for children with cerebral palsy to develop academically and socially. Be an active part of your child’s education. Talk to their teachers regularly, and volunteer in the classroom. Fight to change classes or schools if your child is being segregated or not receiving the appropriate services.

Technology is key to help your child prepare for the jobs of the future. Dictation and communication are just an app download away — much easier than when I was growing up!

5. Make your home and vehicle accessible.

I often see children who are limited in their ability to experience the world because their home and/or their parents’ vehicle is not built for accessibility. For the sake of your child and yourself, make accessibility a priority when buying or renting your home. Choose a one-story home with a large bathroom, and install the proper equipment to help your child learn to care for him or herself as much as possible. If your child uses a wheelchair, buy an accessible vehicle with a ramp so your child can get in and out of the vehicle independently (you’ll spare yourself the lifting, too.) Brand-new accessible vehicles can be very expensive, but there are many used ones available at a more affordable price.

Karin in Washington, DC at age 17.
Karin in Washington, DC at age 17.

6. Embrace the idea of a power wheelchair; one may be key to your child’s independence.

I wasn’t allowed to get a power wheelchair for years, because my mother was afraid I would get less exercise and lose mobility. However, using a manual wheelchair severely limited my life because I wasn’t strong enough to push myself well. It made me socially isolated and frustrated by all the things I couldn’t do. When I finally got a power chair at age 15, my life was transformed. I could go places by myself and cross streets quickly and safely. Even if your child can walk short distances or at home, using a power wheelchair out in the world can give them the freedom to keep up with their able-bodied peers, go to college, and succeed in the workplace.

7. Travel with your child.

My parents passed their love of travel on to me. I was raised to believe that having a disability should not stop you from seeing the world. Growing up, we went camping and visited amazing places all over the country. Traveling helped me believe I could be independent and live in a place of my choosing. Traveling opens your mind to new people and experiences. It can be an opportunity to meet other people with disabilities, at conventions or other gatherings, and find positive role models for your child.

Karin in San Diego, 2014.
Karin in San Diego, 2014.

8. Prepare your child for independence.

Like most young adults, people with cerebral palsy have a desire to build an independent life. Pursuing higher education, finding housing, obtaining employment, and hiring caregivers can all be scary for parents and adult children, and they are not without risk, but the benefits far outweigh the risks.

The best way to ensure your child’s safety after you are gone is to develop a support system for them while you are still healthy. If you are able to provide for them financially, create a special needs trust or ABLE account so the income and resources do not impact benefit eligibility. I encourage you to sign your child up for all available social programs, such as SSI or SSDI, and Medicaid. All of these programs have provisions that allow a person to work and retain benefits; this will ensure that your child can be employed but also get state funding for expensive medical equipment and caregivers.

I hope this list has been helpful to you as a parent. The most important thing you can do is to listen to your child, and empower them to make their own age-appropriate choices in life, just as you would for a child without a disability. With your support, your child will grow up to be the best person he or she can be. Stay strong!



Bad habits, not a bad brain, afflict many cerebral palsy patients, says doctor

Cerebral palsy

TORONTO — Just sitting upright is a battle for two-year-old Jack Pankratz, and so his mother Kim Kucher offers a steady hand and lots of encouragement.

The toddler wobbles even in her arms, as he sways this way and that to look up at the ceiling or yank the corrective glasses off his head.

Jack was diagnosed with cerebral palsy at nine months — the result of a difficult birth in which he suffered oxygen loss to the brain. Doctors predicted permanent cognitive and physical disabilities.More than a year later, Kucher says he’s already defying the odds with the ability to perform a daily regime of barrel rolls, walking drills and core strength exercises.

She credits this in large part to unconventional brain expert and neonatologist Dr. Karen Pape, who gave her something no other medical expert could: hope.

“With some of the medical opinions we were getting it sort of seemed doom-and-gloom for Jack,” says Kucher. “And we’re parents that aren’t just going to settle for that.”

She found much-needed support from neuroscientist Pape, a former director of the neonatal followup clinic at Toronto’s renowned Hospital for Sick Children, who is challenging traditional notions of baby brain injuries.

“The basic mistake is assuming that there is no recovery,” Pape says of the most common childhood motor disability, which afflicted 42,679 Canadians in 2010-2011, according to Statistics Canada.

“I think with all the other improvements, it’s going to naturally become a less severe problem.”

Pape outlines the theory in her book, “The Boy Who Could Run But Not Walk,” in which she argues against the prevailing belief that a cerebral palsy diagnosis inevitably means lifelong, permanent disability with no cure.

Instead, she says the typical limping gait associated with the condition is a bad habit formed by toddlers with an immature brain still recovering from intense trauma. And bad habits can be replaced by good ones, even among teenagers and adults.

The epiphany came after the mother of a former patient announced that her son had just made a competitive soccer team, despite the fact he still limped on the left side with one arm held up. So Pape asked the boy to run.

“And he just took off like a bat out of hell down to the other end of the hallway, running perfectly. And then he did a perfect pivot turn,” she says. “And he comes running back and right in front of me he does a perfect pivot turn on his damaged leg. And I said: ‘You can’t do that!’ And it just was such a shock.”

It made no sense, until she considered the neuroplasticity in adults who had suffered a stroke and yet went on to a full recovery. If an old, deteriorating brain could regrow new cells and rewire new connections, why couldn’t a young, growing brain with a similar injury fully recover?

She concluded that this boy’s abnormal walk — something normal to him since he never learned to walk properly to begin with — hid the fact his brain had actually healed. And it was with this healed, more sophisticated brain, that he learned to run perfectly.

In Pape’s mind, there’s no reason for severe cases of cerebral palsy to persist. She hopes her book can arm parents with information they might need to push therapists and pediatricians to consider their child’s full potential.

“Sixty per cent of the kids with CP are (mild to moderate) and walk independently. Why shouldn’t they be normal?” she says, noting severity is ranked on a scale of one to five.

“I really believe the ones should be normal, twos should be ones, threes should be two. At least half of the fours can make it all the way up to a two, and a significant number of the fives can do it, too.”

Kucher is working hard to give Jack every opportunity to move up from his assessment — somewhere between a three and a four.

Jack meets daily with a variety of experts in physiotherapy, conductive education, speech and language, and vision therapy. It’s a demanding regime that sends the stay-at-home Oakville, Ont., mom driving from one appointment to another across the Greater Toronto Area, but she and her husband say it’s worth it.

“Dr. Pape sees people with cerebral palsy for who they are and their potential. No glass ceiling. And that was the first time we’d ever heard anything like that from a specialist, a physician of such training,” she says, tearing up.

“It was eye-opening for us. And it was that moment where we thought, ‘OK, there is some hope here.”‘



Making Sense of Sex with People with Cerebral Palsy

Constructions of sexuality and disability have been discussed widelyby scholars across a number of fields. However, there has been relativelylittle research on how people with Cerebral Palsy construct their ownsexuality and the salience of the socio-sexual schema which are involvedin this process. As such this study aimed to address three questions; 1)the relative salience of public, interactional and private sexual schema inthe construction of sexuality for people with Cerebral Palsy, 2) how peoplewith Cerebral Palsy construct sexual participation, and particularly sexualspontaneity and, 3) how people with Cerebral Palsy describe theirsexuality. This project utilized a hermeneutic phenomenological approachto explore these questions. In doing so, this study helps fill the gapbetween how sexuality and disability is constructed external to theindividual and how the individual constructs their own sexuality.
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For thisresearch, seven in-depth, semi-structured interviews were conducted withfive men and two women with moderate to severe Cerebral Palsy.Participant data indicated that how people with Cerebral Palsyperceive sexual experiences with others (interactional) is the mostinfluential factor in the construction of their sexuality. Public influenceswere cumulatively the second most important factor in the construction of sexuality by people with Cerebral Palsy. Finally, private influences werecumulatively the least influential factor in the construction of theirsexuality. Sexual spontaneity primarily was a derivative of sexualexploration. Furthermore, participants defined sexual spontaneity asliberating and allowed them to experience their sexuality with othersv
relatively independent of normative sexual scripts. Participants alsodescribed their sexuality primarily in terms of major transitions andexperiences which involved others.Based on the findings sexual theory needs to be more cognizant of sexual agency as primary in the construction of sexuality with significantdisability. In addition, healthcare providers and people with Cerebral Palsyare likely to be successful partners in sexual health when they promotepositive and agentic constructions of sexuality with significant disability. The findings emphasize that people with Cerebral Palsy are cognizant andintelligent agents in the construction of their sexuality. Their articulations,understandings and descriptions of their sexuality demonstrate theirinterest and awareness in their sexuality and issues related to it. Peoplewith Cerebral Palsy are sexual agents and beings who empowerthemselves
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Common Oral Therapies for Spasticity in Children with CP Found Safe and Effective

Two common oral treatments for muscle spasms, diazepam (best known asValium), and baclofen (Lioresal, Liofen, Gablofen) were found to significantly ease spasticity in children with cerebral palsy (CP) and to be safe in this age group.

These results were reported in the article, “Prospective Randomized Study of Oral Diazepam and Baclofen on Spasticity in Cerebral Palsy,” published in the Journal of Clinical and Diagnostic Research.

Spastic cerebral palsy, characterized by jerky movements and joint stiffness, is the most common form of CP, and diazepam or baclofen are often prescribed to treat this condition. Diazepam acts by increasing the inhibitory effects of the neurotransmitter GABA at central nervous system synapses; baclofen is an agonist (i.e., a chemical that binds to a receptor and activates the receptor to produce a response) that has pre- and post-synaptic effects on monosynaptic and polysynaptic pathways by binding to GABA B receptors. GABA B receptors are found throughout the nervous system, and have been implicated in a wide variety of neurological and psychiatric disorders.

Researchers evaluated and compared the effects and safety of diazepam and baclofen in children with cerebral palsy. Specifically, they assessed and compared the drugs for their effectiveness in reducing spasticity and for their side effects.

Investigators performed a randomized, prospective follow-up study (for one year) after administrating diazepam or baclofen in weekly incremental doses, up to the recommended maximum dose, to 60 CP children for three months. Study outcomes included spasticity reduction (measured by Modified Ashworth’s Scale or MAS, and Range of Motion improvement or ROM), and an adverse effects profile.

At baseline, the groups showed no differences. At month 1 and month 3, children in both the groups — diazepam and baclofen — showed improvement in their mean MAS scores – from 1.96 at baseline to 1.63 and 1.41 at 1 month and 3 months, respectively, for diazepam; and from 1.84 to 1.57 and 1.31, respectively, for baclofen. Significant improvements were also detected for ROM between baseline and at 1 and 3 months for both diazepam and baclofen (with no statistically significant difference among the two groups).

Drowsiness was the most commonly observed side effect in both groups.

Researchers concluded that both oral therapies were effective in easing spasticity in children with CP, and both were safe for use in young patients. Future studies with larger numbers of patients and longer follow-up periods are needed, they said, to fully assess functional improvement



Robotic legs could power up physical therapy for kids with cerebral palsy

Kids suffering from cerebral palsy may soon have a powerful new physical therapy technique in the form of robotic assistance for their legs. A study is being conducted on the potential benefits of the system, newly adapted for the use of children.

Lokomat is a “robotic gait training program” that’s been around for a couple of years, but mainly used by adults. As any doctor will surely tell you, treating kids is a whole different process — and not just because they’re smaller. Just like in school, motivation and attitude need to be considered more closely.

Today at the university, the researchers conducted a little photo op and press event to show off the device. 12-year-old Maggie Slessor, who suffers from a form of cerebral palsy, demonstrated the Lokomat with the help of her physical trainer.

In the press release announcing the study, Slessor is enthusiastic: “It’s great to be able to walk without having to hold on to anything. My friends think it’s really cool when I show them the pictures. They think I’m a robot!



Causes of Cerebral Palsy

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Cerebral palsy is caused by damage to the developing brain before, during or after birth. There are multiple types of brain damage that can lead to different types of cerebral palsy.

What Causes Cerebral Palsy?

Cerebral palsy is caused by traumatic injury to a developing brain, including the parts of the brain responsible for motor control, coordination and balance. Damage to different parts of the brain’s motor control centers causes different types of cerebral palsy. The level of disability depends on the severity and timing of the brain injury.

  • About 70 percent of cerebral palsy cases are caused by prenatal injuries
  • About 20 percent are caused by injuries during birth
  • About 10 percent are caused by injuries after birth

What Causes Brain Damage?

There are several incidents that can damage the developing brain. For example, an infection may inhibit the neurological development of neurons and synapses in the brain or trauma may occur during or after birth.

Things that can disrupt or hinder the healthy development of a child’s brain include:

  • Infections during pregnancy – Mothers can pass infections to the fetus during pregnancy. Prenatal infections are most dangerous in the first few weeks after conception. German measles (rubella) and cytomegalovirus (CMV) during pregnancy are known causes of cerebral palsy. These viruses cause the mother’s immune system to release proteins that not only attack the infection, but also cause inflammation in the baby’s brain that interferes with normal development. Mothers who eat raw or undercooked meat can increase the likelihood of getting an infection.
  • Infections after birth – Infections (such as meningitis) contracted by newborns can cause brain damage. Meningitis causes severe inflammation that can damage the motor control centers of the brain.
  • Severe untreated jaundice – When a newborn has a yellow color to their skin and/or eyes, it is known as jaundice. Jaundice is caused by excess bilirubin, a chemical pigment that is normally filtered out by the liver. It is normal for newborns to experience mild jaundice before their livers fully develop. However, severe jaundice left untreated can turn into a condition known as kernicterus. Kernicterus is characterized by buildup of an unsafe level of bilirubin, which is toxic to the brain
  • Asphyxiation – Asphyxiation is a lack of oxygen reaching the brain. It can cause severe brain damage to a baby during birth. Early detachment of the placenta, a ruptured uterus during birth or the umbilical cord getting pinched in a way that restricts blood flow can cause oxygen deprivation. Choking on an object or a near-drowning experience can also cause asphyxiation that leads to cerebral palsy.
  • Head trauma during or after birth – Blunt trauma to the infant or toddler brain can cause cerebral palsy. Head injuries may occur during labor or delivery or within the first several years of life.
  • Brain hemorrhage before birth – A brain hemorrhage is abnormal bleeding of the brain caused by a ruptured blood vessel, which can cause serious damage to the motor control centers in the brain.
  • Genetic causes – There has been some speculation and research to suggest that a minute proportion of cerebral palsy cases are hereditary. This is still being studied, and the number of genetic cases of CP, if they exist, is likely negligible.

Determining the Cause of Your Child’s Condition

It usually takes up to 18 months to diagnose a child with cerebral palsy, but it could take longer for mild cases. Doctors may use computed tomography (CT) scans and magnetic resonance imaging (MRI) to take images of the child’s brain. These scans may reveal damage in key parts of the brain that give clues to the cause. However, it isn’t always possible to determine the cause of cerebral palsy.

Causes by Location of Brain Damage

The areas of the brain that control motor skills and movement are the motor cortex, pyramidal tract, cerebellum and the basal ganglia. All of these components relay the impulses from the brain to the nerves and muscles that control movement. Damage to any of these parts of the brain may cause cerebral palsy.

  • Spastic – Spastic cerebral palsy is caused by damage to the motor cortex. This causes exaggerated, jerky movements.
  • Athetoid/dyskinetic – Athetoid CP is caused by damage to the cerebellum and/or the basal ganglia. Damage to the cerebellum causes balance issues, while damage to the basal ganglia causes involuntary movements. Athetoid cerebral palsy involves damage to the basal ganglia, but some cases also involve damage to the cerebellum.
  • Ataxic – Damage strictly to the cerebellum causes ataxic cerebral palsy. This damage is responsible for issues with coordination and fine motor skills. Children with ataxic CP appear unbalanced.
  • Mixed – Those with a mixed condition have traits of several types of cerebral palsy caused by injuries to multiple motor control centers in the brain.

Injuries at Birth

Approximately 10 percent of cerebral palsy cases are caused by injuries at birth. The most common cause of these injuries is asphyxiation, and most often in delivery rooms.

Although obstetric care is the best it’s ever been, a small percentage of birth injuriescould have been prevented. These injuries are caused by severe medical neglect.

Scenarios that can lead to injuries at birth include failures to:

  • Detect irregularities in the umbilical cord
  • Identify a decrease in the baby’s heart rate
  • Treat severe jaundice

These scenarios aren’t typical and result from careless medical procedures in the delivery room. Regardless of the cause of a child’s cerebral palsy, there are manytreatment options available to help them live as normal a life as possible.

If you suspect that your child’s cerebral palsy was a result of a preventable birth injury, you may be entitled to monetary compensation. Get in touch with our experienced lawyers and start your free case evaluation today.



Finding Self-Confidence Through Physical Fitness as a Person With Cerebral Palsy

Tiffany after and before her weight loss.

Two years ago, I made a drastic change in my life. At that point, I was just graduating college and was at a very unhealthy weight. I got to the point where I couldn’t walk or stand for long periods of time without my body hurting. With my whole life ahead of me, I faced the fact that I needed to improve my health and give myself a chance to live the best life I possibly could.

A few weeks after I graduated, my health journey began. I started working out a few days a week in a group fitness class with trainers and a few days a week on my own. I also took a huge leap by completely changing my nutrition. I gave up soda and now lead a paleo lifestyle. My diet consists of lots of veggies, protein (mostly meat), seafood and fruits. I cut bread and fried foods from my diet and eat very little dairy. Every once in a while I treat myself, but I feel so much better now. It’s all about striking a healthy balance.

Tiffany Eickhoff.
Tiffany in a 5K.

While these changes to my lifestyle took time and perseverance, my quality of life is much better as a result. Over the past 21 and a half months so far, I have lost 70 pounds. I am down to only having to walk with one cane and rarely ever use my wheelchair any more. I even raced in my first ever 5K on November 14th of last year, and completed my third 5K on April 2nd! The positive impacts have also been reflected in my mind and spirit, giving my overall self-esteem and confidence the boost it needed. Now, I’ve gotten into fashion and enjoy putting outfits together and taking more pride in my appearance. I also gained the courage to start learning how to drive again and got my driver’s permit.

Being healthy is a lifestyle for me now. I realize it’s a process, and take it one day at a time. I keep getting stronger every day and continue to reach for higher goals that allow me to live life with greater independence. Next up, I want to complete a half marathon, marathon, and triathlon. I am currently learning how to drive with hand controls, and hope to get my driver’s license soon. Eventually, my goal is to live completely on my own and totally support myself. Life is about the journey. I am confident, driven and determined that the sky is the limit for me!

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please see a medical professional before starting any diet or exercise program.



How My Husband’s Cerebral Palsy is Like the Sprinkles on My Favorite Cake

A yellow cake with vanilla frosting that is encrusted in rainbow sprinkles. The cake was shot against a pale gray backdrop.

Dear cerebral palsy,

If my marriage was a cake, you would be the brightly colored, impossible to miss sprinkles covering the outer edge. You’re there, boldly covering the surface area of what me and my husband and family are.

At first, I didn’t think much of you. You were part of my childhood, there adorning the cakes of two of my closest friends. You weren’t this strange, foreign thing like blowfish or something that I had no experience with. Besides, this is a cake metaphor, and blowfish on a cake would be weird.  I knew you.  You were there, but you weren’t on my cake.

As I saw the impact you had on my husband, I started resenting you.  Seriously, sometimes sprinkles are just too much on a cake anyway. There were surgeries, physical therapy, more surgeries, wheelchairs, and… wait… more surgeries. And with every little thing, every sleepless night my husband endured, there you were. And believe me, you’re the first thing anybody sees when they look at us. People don’t see our love, our humor, or even his ability. They see his wheels. They see you.

Now, nearly seven years later, I have come to love you. Not just the “I guess I’ll deal with you” love, but a love filled with gratitude. As I grew, and saw my husband and now son grow, I see you for what you are.

Christine's son pushes his father's wheelchair.
Christine’s son pushes his father’s wheelchair.

You see, without you, cerebral palsy, my family wouldn’t be what it is today. We wouldn’t be the same people. Through the struggles, discrimination, pain, and frustration, my husband is more resilient and determined than anyone I’ve ever met. His faith is unbreakable and unwavering. He is getting his master’s degree, chasing his dreams. He is such a patient father, always encouraging but never forceful.  He understands himself, and his limitations, which gives him a much better understanding of those around him. He shows our son what perseverance and true strength are every day. He is the most loving, gentle, supportive husband.

Because of you.

Because of you, cerebral palsy, my son has grown tremendously in his faith, and has a true servant’s heart. He learned to walk pushing his daddy’s wheelchair. He holds doors, he waits patiently, he helps at every opportunity. He has no concept of disability. At 5 years old, he understands that all people do things differently, in their own way, and everyone does better working together. He believes from firsthand experience that God works all things for good.

Because of you, cerebral palsy, we believe without a doubt that God holds us all. We know that tomorrow isn’t promised, but to cherish each day as it comes. Every single moment is precious. Love is hard, and everything that’s worth having is worth the work it takes to keep.

Because of you.

Every single moment, eyes are on us. He can’t go to a job interview without you. You are a hidden blessing, cerebral palsy, because you help us see who is interested in the whole cake, not just making a judgement based on the decorating job. Anyone can make a cake look good, but it’s got nothing to do with how good the cake is. You force people to look beyond the exterior.

So thank you. Thank you for being part of our life. I know that we will always have the strength to fight and love more than we ever could without you. You’ve given us dreams, passion, drive, and with that, we can stand firm and show the world ability, and help them to ignore that silly little prefix that so many can’t look past.

You’re the sprinkles on my favorite cake.