I receive several emails a week from parents of children with fibular hemimelia. I love receiving these emails and know that a large portion of the readers who find my blog are trying to search for information on this condition. I try to keep that in mind when I write my posts. I want to document this part of our lives with the hopes of helping others.
A woman named Hannah wrote me this incredibly inspirational email. I asked for her permission to publish it because I thought it would be an encouragement to many.
I read your blog and was incredibly moved by your story. I was born with fibular hemimelia and after two years of painstakingly and agonizingly considering all possible options my parents decided to amputate (Syme's amputation) when I was two years' old. Having spoken to my parents now as an adult, I can only comprehend a little of what they must have gone through and I can't thank them enough for the courage, like you, that they showed in making that decision.
I have been very lucky in that I've very rarely experienced pain due to my prosthesis, I was "bullied" once at school and before I could even open my mouth to respond a group of kids had already jumped to my defence, I was high-jump champion at primary school, I don't have to queue at theme parks, I went to University and got a degree, I moved to Switzerland and I'm now engaged to a Swiss guy and preparing to start my own family.
I don't know if this message can possibly help you but I wanted to assure you that your Anna is normal. Living a life with a prosthetic leg is different, certainly, but it forms such a miniscule, tiny part of my life that both I, and the people close to me, often forget I even have it. I'm not a courageous or outstanding person, I'm normal. I've been through all the stages with my leg, from a child wanting to be like others, being proud of it because it gives you great stories, as a teen wanting to wear high heels and now as a 27-year-old I'm engaged to a wonderful Swiss boy and preparing to have children of my own and being incredibly proud of my prosthetic leg (please see pic attached). There are obstacles to overcome, I will have to wear flat shoes under my wedding dress (not such a problem considering my fiancee is only a little bit taller than me), if I suffer with severe water retention during pregnancy I may have to use a wheelchair for the last month or so and I have a little panic attack when I have to walk down a steep mountain slope (it would have been enough to find a nice Dutch guy instead of a Swiss one). I think you'll agree that there are far more serious problems in life...
If I can be so bold as to share with you some of my own experiences which may or may not mean anything to you, now or in the future.
Anna will have trials and difficulties as she grows up but they will be because she has too much homework, she doesn't know if the guy she likes, likes her or not, she has nothing to wear and she hates her wardrobe, her hair won't go right, she has a spot on her forehead (which only she notices), she's fallen out with her best friend over she doesn't know what (it will last two days). All these trivialities will completely and utterly bypass any consideration she will have for her leg. In other words, she will have all the normal worries of a normal child/teenager/adolescent/young adult.
I'm not somebody who takes everything on her chin, I'm not a super-natural person, I moan about having to climb up a lot of stairs, about having to get up early for work in the morning. But I've always, thanks mostly to my parents, had the outlook that I am completely normal. I've never considered myself "disabled" and I've always been encouraged to do everything other children were doing, my Mum often dressed me in skirts because she liked them.
Anna will be an individual and will deal with her leg in her own way but I think a good approach is treating her as a completely normal child, encouraging her to do everything her peers are doing and allowing her to find her own limits rather than pre-defining them for her, just like all the other children.
Enjoy her and particularly the comic moments that her leg will undoubtedly bring (I remember an April Fool's day trick of placing one of my spare legs under the cupboard at school so the foot was sticking out and we shouted to the teacher that a pupil was stuck - their face when they pulled out my leg was hilarious and it went down in the school legends. Unfortunately my role in the trick was immediately apparent...)
Good luck and have fun! Best wishes from Vietnam (I'm currently on an 8-month world tour and the kids here love my leg - it's an immediate icebreaker!).
April 2, 2014
This is a long post. Too long.
I realize I haven’t posted much lately. Lately I’ve been debating whether or not I want to continue blogging. There are a lot of aspects about social media that I don't like, blogging included. I go back and forth about whether I want to keep writing, whether I have anything to say worth reading, and whether I want to continue to be vulnerable. I see no real point in blogging if I can’t be real and transparent. I’m not interested in facades. I’m not sure if I will continue, or at least write as often, but there are a few things that I like about writing that makes it hard to give up. One is the blogging community and the ability to connect with people from all over. The other is the way God speaks to me when I write- putting an experience to words makes it more tangible. It’s like I’m writing the story that God is giving. Writing in a journal never has that same effect for me. There is something to be said about speaking out your stories and experiences that changes you. God created us to live in relationship so I it makes sense that there is power in sharing them.
I’m going to share with you my story. What story? There are so many stories in life. I view it as THE story. The biggest story: "my story." Some people know parts of my story. I don’t have a problem talking about it. However, few know the whole story. I never intended to share it for several reasons: it’s personal, I don’t want pity, and it makes me susceptible to risk. Opening yourself is hard. Not only because it alters what others think about you, but because you allow yourself the possibility of your weaknesses being used against you. What if I share my weaknesses, and then someone I know filters everything through it? "Oh she must believe/act this way because of XYZ." No one wants to be viewed through a limited lens. Or, what if people use their knowledge as a scapegoat for their own wrongful actions? Despite these risks, self-preservation is not a healthy way to live; it doesn't facilitate true community. There’s no point in being concerned about others. That’s God’s job. My job is to be concerned about my own actions, and if there is something in my life that can lead another person towards wholeness and healing it would be a shame to keep it to myself!! While the majority of people who read my blog, based on the traffic log, are strangers searching for fibular hemimelia information, there are some readers who are family and friends. I don’t post this blog on Facebook or any other social media network and probably never will. So all that to say, the purpose of this post is not to satisfy others' curiosity but to tell a story of a powerful God who does not let us down.
So here is “my story.” Without going into a lot of unnecessary, painful details because it's not important, my family went through a traumatic experience when I was one-and-a-half years old. It lasted for about two-and-a-half years, finally ending (though as many people know, a trauma never truly ends but often just begins) when I was four. It affected all four members of our family differently. Because it was so painful, everyone retreated into themselves and dealt with it on their own. There wasn’t much reaching out to each other or talking about it; everyone went on with their lives as if it never happened. The problem was that because of my age I had not yet developed coping skills; I had no ability to self-cope, and from that sprung a mostly life-long, unexplained depression.
The most fragile time period in life for a trauma to occur is between the ages of six months and three years. This is the time when we develop our worldview. Our worldview is the paradigm through which we will live the rest of our lives. It involves how we see ourselves and how we view the world. Do we view the world and others as safe and kind or as dangerous and hostile? Do we view ourselves as competent and good or as incompetent and bad? Once developed and reinforced, extreme worldviews are quite difficult to change; many would argue impossible. Because they are so ingrained in you, you cannot reach down and turn switches off and on, not even through your most sincere efforts. Children who go through intense, consistent early trauma or abuse find that they live their lives with a distorted worldview leading to a host of problems. When trauma happens at an older age, even at age five, there is already some resiliency built in. People are complex, and trauma affects each child different. No one knows exactly why some children bounce back better than others. There are some major mitigating factors such as how intense and long the trauma is, how many areas of your life it affects, whether it affects the relationship between one or both major caregivers, and whether there was a buffer relationship built in. Psychology would say I had few mitigating factors on my side, despite growing up in a stable family environment from that point on. My doctor also strongly believed I had a biological predisposition to depression based on family history, and because it was triggered at such a young age, my "brain circuits" became wired so that this was my "normal."
All of my childhood that I can remember, as early as I have memories, consists of memories of depression. Of oppression, sadness, and inner turmoil. Despite my loving, caring family and secure life I lived in a regular state of unexplained sadness (i.e. I could not identify why I was sad). It was buffered with happy moments and intermittent good times, but the sadness never left. It was an unwanted shadow following me around wherever I went. I could pretend it wasn’t there but it always was, and it always affected me; I had no knowledge of life without it. It took away from what should have been the happy times and it further darkened the hard times. I was labeled as a sensitive child, very sensitive, though most of that was simply a product of the heaviness people didn’t know about. I could describe memories from when I was five, six, seven, and so on during this darkness but there is really no point. It was there.
When I look back on my early childhood, I know in my head there were lots of good times and happy memories. I had so much to be thankful for. Yet the pain and sadness was so great that it clouds over all those good memories; swallowing them up and leaving me with mostly tangible memories of turmoil. I couldn’t describe to you many happy memories even if I tried, though I know there were plenty of them; I have a hard time recollecting them. I don’t like to look back very much. I prefer to look ahead.
When I was 15 and things were only getting worse, I came across a checklist of symptoms of depression. It then clicked. Prior to this I had never known anything other than depression, so I thought it was normal. I told my mom and showed her all my ‘checks’ on that piece of paper. She immediately took me to see a psychiatrist, and he diagnosed me with dysthymia which wasn't a particularly hopeful diagnosis, one with a much worse prognosis than regular depression due to its chronic nature. There’s not much to say about my feelings regarding this information. I started taking some medication, switched to different ones when it did nothing, and saw a counselor as required. She told my mom I was a ‘resistant client.’ I can’t say she was particularly skilled. I was only fifteen and didn’t have any explanation for my turmoil. In her eyes that meant I was holding something back; she didn't realize my mind was truly blank. I think a child depressed from the age of four was a challenge for her.
I never stuck with medication or counseling. It did nothing, and at the time I wasn’t interested in relying on those things anyway. What was the point? I had gotten that far; I could get by on my own. I resolved to try as best I could and hopefully down the road the pain would lift. I lived for that. But I can’t say I always believed it would ever come. At the time I related a lot to Sylvia Plath; when I read “The Bell Jar” I felt like I was reading about myself. Except it wasn’t a very hopeful book. She ended up committing suicide at age 30, after she finished the book! I can’t say with certainty that wouldn’t have happened to me down the road if my life hadn’t taken a major turn, but I don’t think it would have. Hundreds of times I desperately wanted to escape the pain as it was too much to bear, and I thought about it often. However,something always kept me far enough from it to where it was never a imminent threat. I think part of it was that I lacked courage and a part of it was the presence of people who loved me and had expectations of me. I also think a large part of it was a supernatural grace- as if my spirit knew that a change lay somewhere in the future.
Life continued despite its pain. I don’t think my friends or family ever suspected much. I hid it pretty well and appeared to have it somewhat together. I graduated third in my class, was homecoming queen, and had the lead role in our ballet; not exactly the profile of a depressed person. I poured most of the energy I did have into these distractions. Thankfully they were healthy distractions instead of destructive ones. I owe that one to my family and upbringing. Despite all those daily efforts and successes, many nights I collapsed exhausted on my bed and cried myself to sleep.
Eventually I went to college. That is where my life started to take a turn. When I came to the University of Georgia, I knew nothing about a loving God or saving Grace. I thought religion was interesting but silly. I viewed it primarily as a cultural thing (I grew up Catholic), and a primitive way that man chose to relieve his suffering and find meaning in life. I wasn’t about to be a fool just to find meaning in my life. Plus, if you are deceiving yourself into a meaningful life, then it’s not really meaningful after all, is it? It was during my freshmen year when a fellow dance team member invited me to a campus ministry service that my eyes were first opened to the love and power of God.
Someone in my life at the time was a real, true example of a God-centered person so much so that I sensed something supernatural was driving his life; there was no other explanation for it. Yet my intellect had a hard time reconciling so many things I didn't feel comfortable with about Christianity. After months of being immersed in a true, loving, Christian environment, I had my Saul moment. I remember sitting on the bedroom floor at this person's house, having just read More than a Carpenter by Josh McDowell. It's this little book that goes through the logical progression of coming to terms with what you believe about Jesus's existence in history; how you have to believe that he is either the Son of God, a liar, or a lunatic. This was all well and good, but it was the last chapter that really impacted me. He talked about his father who was a long-time alcoholic and found no relief through anything offered in this world. It was only until he gave himself over to God that freedom and transformation entered his life. A simple truth, yet one that hadn't hit me at the appropriate time. All of a sudden, I got it. I needed God; I couldn't live without him. What did I have to lose? I had tried for 19 years and much of that was filled with darkness. I had no options left. The world had nothing to offer me except a grim diagnosis. I needed something that wasn't found in this world. That was the most important day in my life and since that time, I am amazed at the joy and love God has infused into my life. He saved me, not only from an eternity apart from him, but from my own demise. Without a doubt, he is not only my saving grace but my hero.
There was a distinct moment in my walk with God when my oppression lifted. I will never forget it. There was no earthly explanation for it; God simply reached down and lifted me up, but it did require me to step outside myself and receive it. It was an incredible experience of his power.
I wish I could say that from that point on the past 19 years of a warped worldview lifted and I skipped happily through life, but that’s not the case. Despite experiencing freedom, there were still plenty of cognitive and behavioral patterns that were just as ingrained in me as they were before. I had to consciously choose to walk in the ‘new’ me and not the old me. The difference this time was that I had a choice: a better option. I wasn't so far under oppression that I couldn't act. It’s like one of Jesus’ many parables: When you have new wine, you have to find a new wineskin to keep it in. It’s not going to happen on its own. If you leave your new wine in an old wineskin, it’s not going to work. I used to wonder why God didn't just fix everything all at once. Now I don’t expect him to reach down and turn my worldview upside down or bring it to completely back to normal. After 29 years, I suspect that will not happen, and I think it will always be a part of me. But I’m okay with it, because it's not the part of me. It’s been a long process of learning to walk in my new self each day. But as time went on from that initial day of freedom, and over the last nine years, my life has done a 180. I no longer live in darkness; I live in light. I no longer live in unexplained sorrow; I live in hope. And while there are certainly still struggles and hard days and times where I want to allow melancholy to take over, they do not overtake my life; God does.
This is the message we have heard from him and declare to you: God is light; in him there is no darkness at all. 1 John1:5
There are three major ways that my worldview and past wounds still affect me today and are the source of my biggest weaknesses. One is that I become overwhelmed easily (think food allergies: ugh!) and have a tendency to turn off when I get overloaded, though that happens less and less often as I get older. Thankfully, Ben knows my limits are lower than some and he helps shoulder the load and gives me breaks because he knows I need them. The second is that I sometimes have trouble entering into the moment; it doesn’t come naturally to me. I suspect that during that fragile time I learned that I didn't have the coping skills I needed to live in the present circumstances and so I detached myself from it- sometimes it feels like I'm watching what's going on around me rather than being a part of it. This used to happen every day but now it only happens every so often. Lastly and by far the most challenging aspect is that my first instinct is to dwell on the negative and be pessimistic. Yes, my impulse is to view a situation through a lens that says “Life is to hard to overcome. It cannot be trusted. It will always be full of pain; you don’t stand a chance.” Perhaps this comes out in my posts sometimes. But even though it is a constant challenge, most of the time I choose not to give in to those messages, or at least not to give in to it for longer than a short period of time. It might take every ounce of energy I have but it’s always worth it. A life lived in bitterness is no life at all. Jesus tells us to take hold of the life that is truly life. So yes, these are weaknesses that I have, but they don’t run my life anymore. I experience them but most of the time I put them in their place, not the opposite.
Some random thoughts:
Being a mother has brought a special sort of healing. It has given me the opportunity to associate childhood with joy rather than sorrow. To see Anna and Kimberly learn that they are safe and that the world is trustworthy and full of joy has healed a part of my life that I have always wanted back. There are rare moments when I look at Anna and my mind flashes back to what it must have been like for me to lose both parents' presence in my life at this tender age, and I feel sick to my stomach. I want to grieve for that little girl who never understood why her loss was so great. But I have learned to let that go and instead choose to dwell on the opportunity to give my children something I never had.
There used to be a lot of times when I looked at someone who hadn't gone through a trauma in their past, someone who had an easy, optimistic outlook towards life and received endless accolades for always seeing the 'bright side of things,' and I felt discouraged. Why is it so easy for them to be positive but it takes every effort I have not to be negative even for a little while? I thought. Why did it always have to be so hard and exhausting when it was effortless for other people? Now I view things differently. I view myself as blessed to have the opportunity to overcome because God has promised a greater reward in eternity for those who have persevered in the face of significant trial. He has also revealed a part of himself that you can only know if you have gone through suffering.
Blessed are the poor in spirit, for they will inherit the earth. Matthew 5
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. James 1:12
And even though I may never be labeled as that person who always focuses on the silver lining, God knows each and every time I put every ounce of effort I have into being optimistic… he sees it, he knows, and he’s proud, even if no one is privy to the outward result.
More random thoughts:
The only thing more healing than having a spouse and friends who know your story, your true story, and love and accept you despite it, is having a God who knows your story even more so and loves and accepts you.
I always think it’s funny when people say counselors have all had their own 'issues.' I would agree that the majority of people go into counseling because they have been through a pretty dark time in their life. They know what it is like to be there and come out the other side and they feel so strongly about that that they have to help others do the same. You don’t have to have everything together to be a great counselor; quite the opposite. The great counselors I know have been the ones who have gone through darkness and found light. It is very difficult to find the empathy you need to help someone overcome a dark struggle if you have not been in a similar place at some point in your life. You will be most likely feel sympathy and/or pity and a sense of superiority, which isn’t very helpful to others. At least, that’s been my personal experience.
So that is My Story. Or really, God’s story. Congratulations if you’ve made it all the way to the end of the world’s longest blog post. If you are in the midst of a similar story, I encourage you to rewrite it. Or rather, let God rewrite it. It doesn’t matter if it’s lasted 6 months or 19 years.
He just might surprise you.