The following interview was by Mason W., an administrator of the
Facebook page "Help For the Journey of Life"
Sure! Hi, guys! Bless your heart! I'm Sarah Hamlin, disability advocate and public speaker. Well, right from birth (after spending my first 2 months in the hospital for medical reasons), I went into foster care, and was raised until age 3 by a wonderfully sweet, elderly couple who loved God and gave their home to as many babies and toddlers of all abilities, as they could, until they found suitable, loving, permanent families. After my adoption was finalized, I grew up with an adopted older brother.
For those who don't know, what is Cerebral Palsy, what are the symptoms, and what symptoms have you experienced? - How old were you when you were first diagnosed?
CP in general is caused by some sort of brain injury before, during or shortly after birth. Because of this, every case is different. For me, my CP affects both my legs and right arm. I can't walk or stand independently and up until a few months ago, my right hand was virtually useless. When I was 1 year old, it was while I was in foster care that I was diagnosed. My grandma (my "foster mom")* started noticing that while the other babies were learning how to crawl and everything, I wasn't. She'd sit me up against the couch, turn around and when she'd look my way again, would find me staring at her on my side. She'd try again and again, I'd fall. If she or my grandpa tickled my legs, I'd feel it, but my legs wouldn't move. They took me to the doctor and I was diagnosed with Spastic Hemiplegic CP, and Spastic Paralysis (of the legs). Essentially, my leg muscles had been so tight they were immobile, and my nerves weren't the cause of the paralysis, explaining why I could still feel touch.
* I adopted them as my "grandparents" when I was adopted into the Hamlin family. They still are very much involved in my life.
What are some of the treatments for CP, and what treatments did you have to do?
There are many types of treatment, but because each case is different for everyone, not all treatments will have the same results. Your CP specialist, neurologist and Orthopedic are the best people to consult when considering treatment. Personally, when I was first adopted, I had Adductor Release surgery which enabled me to learn to move my legs. Shortly after that surgery, I started my frequent BOTOX injection procedures until I was 8, which loosened my muscles enough for me to use a posterior walker with ease. When I turned 8, I had Hamstring and Heel-Cord Lengthening surgery. Since an early age, I've gone through frequent and often weekly physical therapy. Recently, to help increase coordination and mobility in my right hand, I've seen incredible results with electrical stimulation therapy.
How hard was it to cope with your CP and go about your day to day life? Growing up, what were some of the hardest times (that you feel comfortable sharing of course) you had to deal with, and how did you get through them?
Oh, gosh. I would have to say one of the hardest times in my medical journey was when I was 12-years-old. From the age of 5, I quickly progressed in using my walker and soon would use it daily at school. I used it everywhere and had incredible endurance and a speed that was I guess, rarely seen by my PTs. After walking with the frame so much and so well for 7 years, I suddenly felt stiffness in my right foot. I wrote it off as just being my CP, but a week later, woke up unable to move it. After being rushed to an accredited Children's Hospital, I was diagnosed with drop foot. Because the drop foot made me trip and threw my balance off so severely, my doctors and therapists thought it best to set aside the walker, and order a power wheelchair. I can't tell you how devastating that felt. Around that time, I also began having convulsive panic attacks that often landed me in the ER too many times to count, without a diagnosis. These challenges among other things, drove my confidence and motivation into the ground. After going through this for the next 3 years, not having any true answers to put my confusion and frustration to rest, on May 15th, 2011, I tried to take my life and nearly succeeded.
Around that time, after hearing where I was at physically and emotionally, supermodel, Miranda Kerr immediately reached out to me and surprised me with an autographed copy of her book "Treasure Yourself". In the front cover she'd written: "Let your light shine, darling girl." I truly believe that it had been her kindness and those 4 words that broke through my depression and began my recovery.
When did you really begin to discover your religion? How has your religion contributed to your life and how has it helped you deal with your CP?
Within the same year or two that I tried to take my life, I met a young man who'd grown up with the same Biblical-centered childhood as my brother and I had. At the time, I wanted nothing to do with God or what I'd been taught, but this man stepped in and emotionally "took me under his wing" so to speak. His genuine happiness radiated in the way he carried himself and interacted with others, and I just remember thinking, I want that happiness. For the next month, he was drawn to my situation and worked with me, encouraging me, teaching me, listening to me. I accepted Christ permanently on October 15th, 2011, just a few weeks after my 16th birthday. I suddenly felt that happiness, that zest for life and God. This man showed me God like I'd never seen Him before, and I finally realized that God was my light. Recently especially, I have been giving my thoughts and issues to God and every night, I listen to Bible teachings from our fellowship. My reestablished believing and reliance in God and the Bible has kept me going strong. It has given me refuge and hope. Oh, yeah... Yeah, I'm a completely different person than I had been 4 years ago. There's no denying it. God saved my life.
Where are you with your CP now, has it gotten better in recent years?
I am rapidly progressing in my strength! I am now able to walk for 5 minutes at a time with my walker and I'm currently working on my crutch-walking. Like I mentioned, the mobility in my right hand has greatly improved since I've been doing electrical stim and intense physical therapy with it. Up until a few months ago, the hand that was virtually useless is now helping to hold objects and open knob-doors. I can now "baby-wave" with my hand, and I'm learning to do new movements with it almost daily.
Do you think that there will possibly be a treatment for CP someday, do you believe there is a fair amount or research in the medical field in that direction?
There's more and more incredible research and finding taking place towards curing and preventing strokes, and really, CP is caused in a very similar way. I think that perhaps if a cure is found to successfully treat a stroke, than it could very well be used to help heal the brain injury that causes CP. However, the difficulty lies in the fact that there are so many different types of CP, and within those different types, everyone experiences different affects. It's hard to say really, because I don't think there's gonna be one cure for CP, rather several to cover the various types or affects. While there is tremendous research taking place for strokes and other diagnoses, I think there needs to be a great increase in the research given to CP. I am very pleased with organizations and foundations like the Cerebral Palsy International Research Foundation and CP Alliance (Australia), and how they're taking the research and awareness efforts to the next level.
What inspires and motivates you to be a public speaker for people with these very serious illnesses, and what inspired you to share your story in the beginning?
As a child, I felt very isolated due to the way I experienced CP. Many of my teachers as a little girl, didn't want me to play on the playground with the others for fear I'd get hurt, and they'd have me stand on the path leading up to the front door. My friends had to come to me often, but they would sometimes get so engrossed in their playing elsewhere, that I'd just watch. Even though my teachers meant well, it was difficult for me, and I'd come home crying some days. My mother tried various things to help some of my teachers get me involved with the other kids' activities, but her efforts didn't really work.
Then my 5th grade teacher came into the picture. One day, she saw me standing in my usual spot watching, and she asked why I didn't go play. When I told her why, she shook her head, blew her whistle and brought me up to the blacktop. Rounding up some of my classmates she proceeded to teach us Four Square and would get me out of my walker and would hold me upright against her as we played. She'd constantly encourage me to just try. She'd have her class do morning walks around the school every day, and she'd make sure I was included. She'd let me walk with my friends at my own pace and go for as long as I could. Occasionally, she'd walk with me and motivate me, and she made me realize I could do much of what the others were doing, I just needed modifications. She taught me how to get my coat off independently among other tasks, and she had me talk to my class about my CP. She was the first person to really encourage me to tell my story.
She had been such an incredible help for me when I felt like I was the only one in the world with my struggles. She helped me come to realize that my experiences would make me a stronger person. Every time I speak to audiences, I think of her and the positive impact she had on my self-esteem and motivation. She was the reason I joined the National "I Am Norm" Campaign. The campaign mission is "redefining normal. Promoting inclusion." It's a lovely campaign uniting teachers and students across the country to do just that and help affirm a sense of worth, and positive energy in kids, and to assist in developing edifying atmospheres within schools. I get to travel to various schools and events around the district with other classmates and talk to students, teachers and school administrators at large about anti-bullying efforts and the importance of feeling and knowing that everyone is respected and included at whatever school they attend. It's all about establishing a sense of unity among the student body.
How do you feel about people looking up to you as a role model? What has it been like being a public speaker and sharing your story on your blog and on Facebook?
I love and feel so grateful that I get to be a public speaker and meet lots of wonderful people. I am so blessed with the opportunities that I had growing up to "represent" kids and adults going through similar things via the media, and I'm especially thankful to be able to reach so many on my social networking accounts. I'm so humbled by the notes I receive from people who have been inspired by my story. When I do interviews or speak at events, I really try to have the contributions that my 5th grade teacher gave me, shine through what I am talking about. When I first started doing interviews and things, I thought that I needed to be perfect, that I needed to speak or act a particular way. I quickly learned through my own role models that people are drawn to authenticity and I then started truly believing in what I was doing and saying. So what if I stumbled a little over my words in that interview or lost my train of thought for a moment at that speech - it's what's in the heart that matters. And I do stall sometimes in front of my audience(s) for a minute or two as I go over my thoughts in my head.
I remember once when I was 15, I did a radio interview during which the interviewer asked "where you get your confidence?" I immediately started sobbing as I told how Ms. Kerr had helped me through my storms that year. I was crying so hard, they had to turn the mics off and someone handed me a bunch of tissues. So very embarrassed, I worried that they wouldn't ask me back to do another interview. When I got home and told my fear to dad, he reminded me that it hadn't been live. He also said that the people in the room were most likely more touched by your outpouring of gratitude for a person, than they were with my answers to the questions. The human in me came out, he said... That was a great reminder to the people witnessing about the power of random acts of kindness. You never know how your actions will impact others.
What would you say has been the best thing that has happened so far as a result of sharing your story with the world?
I think the best thing is knowing that I can be a light to others and help them embrace their uniqueness and worth. I also feel so blessed to be able to reach very prominent and influential people and tell them about my causes and share my story with them, particularly what God has done and is doing in my life.
Has there been anyone who has messaged you, or anyone you have met, who you said to yourself "They are the reason I'm doing this"?
Emma was 7-years-old when her mother contacted me, asking if her daughter could meet me. She had Type 1 Diabetes and her mother thought it'd be very helpful to Emma if she could have me as a mentor and friend. We dressed up as princesses on my visit. I remembered how at her age, I was dressing up like a princess too. But no matter how much I put on the costume, I never really felt like one. I defined a princess as someone who had everything and was perfect. When Emma's mother offered me a snack and drink, I declined, but inside I really did want it. I was embarrassed about how I ate in public because of the way I'd spasm or spill something due to only be able to use one hand. Emma said, "I'll help you!" and she ran to tell her mom I'd like some. When I needed, I let Emma steady the Pepsi can for me, and I was blown away by her eagerness to connect with me. I thought I was going over there to help Emma grow in confidence and to be a light to her, but in actuality, I believe it was I who grew the most that day. I felt like I was having a play date with my 7-year-old self, and it was through my visit with Emma that redefined my idea of a princess as being someone who does what they can to help, because they want to bless, not because they have a certain reputation to form.
What inspired you to write a book and make a documentary about your life's experience?
Without giving too much away about the mission of and story in the book, I'll say that Emma had a lot to do with proving to me that my story was worth telling. I want to give all the glory to God. It's been an incredible journey just seeing how far He's brought me. He completely transformed my view of life and now I see every day as another chance to share how caring He is. I ultimately want to share that self-discovery journey through the novel, as a way to say, "look what God can do when you let Him!"
I was actually approached by a friend who wanted to do a short documentary on my story for a project. I had my daily life filmed once when I was a child for a television special and so I found the documentary project to be a great opportunity to give people a deeper insight into my experiences. It's fun having the chance to do an update on where I am in my journey today, a decade later. Due to busy schedules though, the documentary project is paused and there's a chance it won't be resumed, but hopefully it will at some point.
Going forward, what do you hope to do in your life? What would be your dream job?
I find human reproduction, and childbirth, especially, very fascinating. Since I was a little girl, I've dreamed of being a midwife or OB/GYN. I just think it's absolutely incredible to watch a life come into the world and what a joy that would be to assist in such a miracle! I'd definitely love to have a career of some sort in the field. No matter what career I choose, I hope to continue to excel in my motivational speaking. It's been on my heart to start an organization or foundation someday and to write a book, inspired by my childhood, hopes and dreams. If I become a teacher, to instill the same sense of importance in my students as my 5th grade teacher did with me.
Is there any place you want to travel to, or anyone in the world who you would love to meet; a celebrity, a singer or another public speaker?
I'd love to meet and speak alongside Bethany Hamilton and Nick Vujicjc. They're such incredible role models of mine and it'd be an absolute honor to share the stage with them at some point in my journey as a public speaker.
What would you say is your life's philosophy; how do you approach each and every day, and what do you really hope to accomplish in your life?
I live by a quote from Maya Angelou: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." You don't need arms or legs to make a positive difference, you just need the heart to do it. A simple smile does amazing things and it lights up your face, not to mention brightens someone else's day. One thing I make sure to do is say "I love you" as much as I can to the people I love. I'll say I love you to my family members frequently throughout the day - while my mom's cooking dinner, while my brother's about to take out the trash, or while my dad is getting ready for work. I also try to renew my mind and think positive affirmations. I use Pinterest as a way to make vision boards and "exposure therapy" boards, which I use to help me face my insecurities or worries. I heard somebody say, "when you think you've done enough, do more."
To all of the families out there reading this who have or know someone who has CP or another very serious illness, what message would you like to send out to them?
Be there. Your presence and support is greatly needed. Your positive outlook on life will inspire your child/friend/family member. Believe in them, but believe in yourself, as well. It's okay to be sad sometimes or to feel frustrated, but try and use that as motivation to keep going strong. There are days when I feel the affects of my CP so much that it almost becomes a tangible weight. I'll be doing something and then sometimes, a fountain of anger and sadness will rise up inside of me, and in most of those moments, I'll get in a quiet, private place, kneel on the floor, bury my head in my hands and just sob. I'll drain all the tears out, then dry my face and breathe deep. I'll remind myself of the blessings in my life, like the fact that my diagnosis could've been a lot worse, but it wasn't. Or I'll think of all the children feeling what I just felt, feeling like that they can't go on, and I'll say to myself, one more step. Even if you end up taking one step forward, two steps back for a time, you're still taking that one step. It's still possible to move forward. One of my dear friends and caregivers said something to me, I'll never forget: "trying is a victory."
I feel it's very important for the parent or guardian to become very involved in their special needs child's journey. Talk them through their therapy, encourage them and if you want, do it with them. Every little bit of progress is a victory and it's very motivating to share that excitement and victory with loved ones. It's vital that you take time for yourself and that you remind yourself and the others involved in your child's care that everybody is doing their best and that's all you can do. I also recommend joining a support group related to or about your child's illness(es) and that you help your child find mentors and friends going through similar experiences. It can be tons of fun to do things together and bounce things off each other!