All My Children: An Aberration Story

I didn't feel loved or important and I know I don't want that for my children.

All hail the large family! I grew up watching The Brady Bunch. And like many who evolved from small families, I've always been fascinated by our larger counterparts. At times when my brother had no interest in playing with me, I thought, If there were just one more of us! But who knows, maybe that one wouldn't have wanted to play with me either. There are no guarantees in life or in family.

My husband is the youngest of five, all only six years apart (total). When I married into his family, they seemed like a cool club to which I didn't yet belong. I wondered why my family never seemed like a club. We were more like four people from four different clubs trying to figure out what to do next, what to think, what to say, and how to feel. Although we all loved each other in unique ways, there lacked a connective thread I saw in other families. Now, I realize it has nothing to do with size; size definitely doesn't matter in this situation.

Heather, the latest member of the Aberration Nation works each day to provide that all-embracing connection within her young family of eight. So why is this an aberration? Because it's not always easy, that's why! As a family grows, love can grow, but so can the complexity of relationships, group dynamics, calendars, homework, meals, taking this one there and picking up another over here. I can't imagine the energy required when a family of six children are all young, and the continuous insight and careful word-choice necessary when they're teens. I know from experience that the energy required to raise small children changes into a new, sometimes more difficult energy as they mature and explode into young adults filled with new intellectual thought processes, critical choices, and deep emotion. Watching my daughter experience pain as a teenager was a new experience, a new wound that I'd never felt. It's a pain that forces you to bite your lip and pray, sometimes knowing there's no other alternative.

Heather and her husband, like all of us who are parents, are on a roller coaster. Sometimes you just want to slow it down, stop it, or jump the hell off. But the thrill of the downhill is so victorious, so absolutely exhilarating that we hang on tight. We don't let go. We believe in the ride, knowing it doesn't last forever. One day the little children we loved so dearly morph into something that is altogether different yet similar. In a strange way, they're gone. Whether across the country or across the street, they depart.

I admire the goals Heather has established for her family. Knowing what I know, things may not turn out like a perfect pie-in-the-sky dream, but she's doing her absolute best to ensure her children feel the type of beautiful connection that serves as a powerful brace throughout life ... come what may.

You have six children. What compelled you and your husband to have such a large family in a culture of shrinking families?

My husband and I both come from large families. He has six siblings and I have five. When we were dating we discussed children and both wanted to have a large family. Then reality hit after we had our first two children (boys) 16 months apart and we began to question how many children we really wanted. The two boys were more than a handful and kept us very busy.

Our children come in pairs (the first one planned and the second one a nice surprise). As I mentioned our first pair (boys) are 16 months apart. We then had a two year break and had our second pair (girls) 18 months apart (the younger girl, Morgan, in this set has Down syndrome). I knew I wanted more children after Morgan but also wanted to give her as much time and attention that she would need before making that decision. It was an unknown journey and I didn't have any idea the impact a child with special needs would have on our family. But I also knew I would have more children at some point. I felt like I was allowing fear and defeat enter into my family if I stopped after Morgan and also sending a message to others that it really was a negative impact on our family even though I didn't feel that way. I know that sounds ridiculous, but it was what I felt at the time.

We waited until Morgan was walking (29 month old) and got pregnant again. It took a lot of faith and hope to decide to get pregnant again, more so for my husband. It wasn't like our other pregnancies that were filled with joy and excitement, this pregnancy was filled with fear and uncertainty of everything that could go wrong. We knew too much. I lost that baby (a girl) at 18 weeks. It was extremely hard on my children and my husband (he had a difficult time having to watch me go through the pain of labor and not end up with a baby). The doctors told us the odds--60-80% of 2nd term fetal demises are caused by chromosomal anomalies. It made us nervous to try again. Maybe I was too old (34 years old) and my body just wasn't meant to have more children. We decided to have DNA testing to help us determine if we would try to get pregnant again. Everything came back perfect ( a word I hate)--nothing wrong genetically and nothing wrong structurally. We still don't know why we lost that baby.

We got pregnant three months later and decided to have prenatal screening done for Down syndrome at 14 weeks even though we knew the outcome wouldn't make any difference in our decision to have the baby. I just needed to know. The tests came back showing the risk extremely low. It was a difficult and stressful pregnancy. I had an abnormal ultrasound at 16 weeks that showed something wrong with one kidney. The perinatologists weren't sure exactly what was wrong since it is difficult to make prenatal kidney diagnoses via ultrasounds. They weren't sure if it was MDKD or hydronephrosis. The latter one is common in Down syndrome which raised my risk of carrying a baby with Down syndrome. I refused the amniocentesis. I had just lost a baby at 18 weeks and wasn't about to put this baby at risk. It wasn't until after he was born that we got the diagnosis--MDKD (multicystic dysplastic kidney disease) which basically means he has only one kidney. The other one never developed. It shouldn't affect him and he has no restrictions. It was an emotional pregnancy and my husband knew that we were done. We were very busy with five children and our new baby was a difficult baby with extreme colic for six months. My husband wanted to do something permanent but I wasn't so sure we were done. I just didn't feel like my family was complete. Maybe it was the baby I had lost. I knew it wasn't fair for me to push him into having more because realistically maybe I would never feel done.

Then when my baby number five was nine months old I started to feel sick and dizzy. It took me awhile to realize I was having pregnancy symptoms. I took a test and it was positive. I was terrified to call my husband. He had made it absolutely clear that he did not want any more children. We both felt maxed out with five. I called him and he didn't want to believe me. I think I took 3 pregnancy tests before he was willing to accept it. We waited to tell our families until I was 20 weeks along. We were a little embarrassed to tell people. It was obvious to everyone around us that we were already way over our heads with the five children we already had. Why were we choosing to add more to the chaos? Fortunately everyone was very excited for us. We both got more and more excited as the due date grew closer. We welcomed baby number six last year into our family--a baby girl. After she was born I just knew our family was complete. She is the perfect ending to our family.

What are the most rewarding and most challenging facets of being part of a large family?

I absolutely LOVE having a big family! I look at families with only a few children and wonder how the parents were able to stop. Being a mother is the most amazing thing I have experienced. There is nothing that compares to the overwhelming feeling of love that I have for my children and husband!

The most rewarding facet is that my children have each other. They are never without a friend. They also learn valuable life lessons of sharing, cooperation, communication and hard work.

Even though I wouldn't change having a large family, there are definitely challenges that come with it. The biggest challenge for me is that I don't feel like I can take the kids and go do fun field trips and activities by myself. We spend a lot more time at home than I would if I had fewer kids. It is hard to know if this is because of having so many children or because of the challenge that Morgan presents with being a 'runner' and her special needs.

Another challenge is it's difficult to give them all the time and attention that they each need. My daughter, 18 months older than Morgan, is kind of my 'invisible child'. It's ironic but sometimes feel like she is alone in a home full of children. She is independent and tends to do her own thing. I wish I had more time for one-on-one dates with the children. I don't want any of my children to feel like they got lost in the shuffle. I hope each one knows how much they are loved and valued in this family. I didn't feel that when I was growing up in my family. I didn't feel loved or important and I know I don't want that for my children.

I have two daughters who are eleven years apart so I can’t even imagine having two or three kids close in age, much less six. How do you make it through each day and get everything done?

I don't home school!! I live for routine and structure. I have to, otherwise it would be complete chaos. Each child has certain jobs that they are expected to do before they can play with friends (practice piano, clean bedroom and make bed, clean an assigned bathroom and living area). We have also followed a nap and bedtime schedule. I have my home completely child proof so I can relax in my own home. It also helps that I don't know anything different--this is my life! I am used to the busyness, chaos, constant cleaning, noise, and juggling that encompasses each day.

One of your daughters has Down syndrome. How has this changed the family dynamic? What challenges and rewards has her condition given to the family?

It's really hard for me to answer how it has changed our family dynamics because Morgan joined our family when it was still so young. My oldest had just turned five when she was born (I had four children under five years old) and we were still figuring everything out. I often think about how our family would be though if she were a typical six year old. It's hard to not think about how things would be if she wouldn't have been born with Down syndrome but I think it is easy to get caught up in those thoughts and lose sight of the gift that each child brings to their family.

I think Morgan has been more influenced by being in a large family than her presence has influenced my children. She has behavioral issues with pushing and getting along with other children and I think the chaos in the home has added to her behavioral problems. She doesn't fit the 'happy and sweet' stereotype that is so commonly used with Down syndrome. She spends a lot of time upset and ornery.

My children have a great respect for others with special needs especially Down syndrome. They love it when they see someone else with Down syndrome out in public and always have something positive to say about that individual. They see Morgan as a blessing. They have overheard me talking on the phone to new moms in the 'Down syndrome club' and wonder why the mom is sad or upset that her new baby has Down syndrome. I showed them a picture of a family with two children whom have Down syndrome and they said, "Wouldn't that be so cool? They are so lucky!" They have learned that all of us being different is what makes the world such a beautiful place.

I think the biggest challenge for my children is being patient with Morgan's needs. They treat Morgan like everyone else--which is great, but she does require some things to be done differently. For example, she acts out when she wants their attention and they get mad at her for hitting or pushing instead of just including her and understanding that she acts out when she can't communicate her needs.

Do your other children understand the full extent of Morgan's challenges? How do they cope, and how do you and your husband help them to cope?

I don't think they do understand the full extent of her challenges. I don't even think my husband or I understand the full extent of her challenges. We try to just take one day at a time and focus on what her current needs are and not let ourselves become overwhelmed with the future and what ifs.

We chose to not tell our children anything about Morgan's diagnosis when she was born. They were five, three, and one years old and we didn't think they needed to know that something was different with their sister. We wanted them to love Morgan for exactly who she was, not a diagnosis. They knew she had something wrong with her heart and needed surgery and we also told them that it might take Morgan a little longer to learn how to do things and that was why she was having therapists come into the home to help her learn how to crawl, walk and talk. I really think it has only been in the last few years that they have realized what it means to have Down syndrome because the delays are more obvious as she gets older.

As a child, my brother had a learning disability. Due to this, my parents gave him much more one-on-one attention than they gave me. Although I understood and learned to be highly independent, I also suffered for it. How do you manage to give each child the individual attention they need, particularly with a challenged child in the mix?

Morgan does take more of my time than the others. I have spent A LOT of time this past year trying to get her potty trained and reading. I try to include the younger kids in whatever I am doing with Morgan. If we are in the bathroom working on potty training and reading books together than I usually have my baby on my lap and my 2 year old toddler in the bathroom with me all reading the books together. I feel like Morgan takes up as much time as a toddler does. She is independent in many areas but also requires constant supervision when her little brother and sister are around. I think the bigger problem with one-on-one time is due to having such a large family and not so much the special needs factor.

No parent is perfect. We try to do the best we can for our children. What are your primary parenting goals?

I want to raise happy, respectful and responsible adults that have a love for their Savior, Jesus Christ. We are members of the Church of Jesus Christ of Latter-day Saints ("Mormons") and the gospel is a part of our everyday lives. There is a lot of pressure in our church to raise your children to be active members in the church with their own families. I know a lot of people in the church feel like they have failed as a parent if their child is no longer active and not living their life in accordance to the things they were taught. I don't agree. Although it would be difficult if one of my children chose to not be active in the gospel, I hope it wouldn't make me feel like I had failed in some way.

We spend Monday nights discussing different gospel principles with the children (Family Home Evening). My children LOVE this tradition. They are the ones that remind us about it each Monday. They love having all of the family together and being part of the planning whether it is being in charge of the prayer, song, lesson, activity or treat. We go to church every Sunday for 3 hours. We honor the Sabbath Day and do not shop, boat, swim, ski, do yard work, etc. on Sunday. We spend Sundays together as a family.

How do you and your husband manage to make time for each other?

A happy marriage is our biggest priority and this may be surprising but we actually spend a lot of time together. We both love to travel and go on several vacations a year, just the two of us. We have a couple of babysitters that are absolutely wonderful and we completely trust with our children. It is expensive to pay for someone to come into our home (it's usually the biggest expense of the trip) but the reconnection and individual time it gives us (not to mention the much needed break from my busy life at home) are more than worth it!

I also mentioned that we have scheduled bedtime for the kids. Bedtime is 8:00-8:30 pm during the school year which means we have our own time together almost every evening and usually end up watching tivoed shows or renting a video. We also try to have a date night once a week.

For those of us who are parents, that role is likely the top life-changing experience we encountered on our way to becoming responsible adults. What are the top three life lessons you've encountered and embraced as your family has grown?

Wow!

1. True happiness is found through sacrifice and love.
2. Being a mother to a daughter with special needs has opened my eyes to the world of disabilities and the potential each individual has to make a difference in this world. Every child is of worth and deserves acceptance and love.
3. Nothing is more rewarding or harder than being a parent! And I need a lot more patience!

Stabbed 39 Times: An Aberration Story

I refuse to let a scarred situation hold me back from living life.

Last week I went to my 25th high school reunion. Spending time with all my childhood friends taught me a great deal and, once again, got my wheels turning. One of the deepest realizations I had was the extent to which my reality was so distorted back then. It seems like almost everything I thought about the people around me (and about myself) at 16 was either incorrect or off kilter. If only I'd known then ... what might have been different?

Coincidentally, on the flight down to Shreveport, I read American Pastoral by Philip Roth (one of my favorite writers). A particular passage resonated as I mingled with my past and all that it represented to me for years:

You fight your superficiality, your shallowness, so as to try to come at people without unreal expectations, without an overload of bias or hope or arrogance, as untanklike as you can be, sans cannon and machine guns and steel plating half a foot thick; you come at them unmenacingly on your own ten toes instead of tearing up the turf with your caterpillar treads, take them on with an open mind, as equals, man to man, as we used to say, and yet you never fail to get them wrong. You might as well have the brain of a tank. You get them wrong before you meet them, while you're anticipating meeting them; you get them wrong while you're with them; and then you go home and tell somebody else about the meeting and you get them all wrong again. Since the same generally goes for them with you, the whole thing is really a dazzling illusion empty of all perception, an astonishing farce of misperception. And yet what are we to do about this terribly significant business of other people, which gets bled of the significance we think it has and takes on instead a significance that is ludicrous, so ill-equipped are we all to envision one another's interior workings and invisible aims? Is everyone to go off and lock the door and sit secluded like the lonely writers do, in a soundproof cell, summoning people out of words and then proposing that these word people are closer to the real thing than the real people that we mangle with our ignorance every day? The fact remains that getting people right is not what living is all about anyway. It's getting them wrong that is living, getting them wrong and wrong and wrong and then, on careful reconsideration, getting them wrong again. That's how we know we're alive; we're wrong. Maybe the best thing would be to forget being right or wrong about people and just go along for the ride. But if you can do that--well, lucky you.

So what does this have to do with being stabbed 39 times? Nothing and everything. Reading Roth's passage and talking to my old teenage friends as adults reminded me how intricately each of us exists in our own reality. Some of us envision everyone else as having all the qualities, belongings, relationships--lives--we wish we had. Yet we're all just trying to recover from our own unique 39 stabs. As Roth noted, everything we know about each other is wrong, and yet it's still right because life is about constant recovery.

In the novel I just finished writing, there's a passage on how the plight of the mentally sound can sometimes be worse than that of the mentally ill. The ill can submerge beneath it all while those lucky enough to have our wits about us must trudge on, day after day, knowing what we know and seeing what we see, all the while having to keep on keeping on. It can be exhausting. It can squelch the soul and use up the clock.

With all this on my mind, I read Fredric Almond's beautiful story about surviving the death of his mother, and all the stabs he endured as a child. The physical stabs he experienced and survived are about as close as one can find to a representation of hope for us all, despite the type of wound we carry. As I sit here at my computer, facing some new challenges of my own, Fredric's story reminds me of just how resilient, courageous, and beautiful the human spirit truly is. We cannot change the past, whether rooted in reality, fantasy, misconception, ignorance, or despair, but we can certainly refuse to let it hold us back from living, feeling, breathing in today for all we know it to be.

I'll be thrilled one day to look in the face of my maker and finally understand it all, but until then I'll keep getting it wrong over and over again. But according to Roth, that's okay. That's how I'll know I'm still alive.

As a child, you were stabbed 39 times during a burglary. Can you tell us exactly what happened?

I was eleven years old when it happened. While I was sleep, I heard my mother screaming. Immediately, I ran in her room and what I never expected happened. It was an intruder in our house with a knife stabbing my mother. I screamed out and he charged at me while swinging the knife. My mother jumped him from behind and he left me alone. Spontaneously, I ran in my closet and began to pray, "Lord I don't want to die, I want to live!" over and over again I prayed the same thing. After a few minutes, I decided to try and get help. So I snuck down the hallway and seen the phone on the floor off the receiver. I picked it up and tried to get a dial tone but couldn't. By the third try of attempting to reset and get a dial tone, the perpetrator noticed me and started stabbing me over and over again until I couldn't move. I was being stabbed like a butcher chopping up meat. I was stabbed about thirty-nine times in the face, back, neck, arm, and foot. He left me there in a pool of my own blood thinking I was dead. The perpetrator went back to my mother and continued to wrestle her down and eventually stabbed her to death. I watched him take my mother's life. She was twice her size after he got finished with her. I could only lay there and watch as if I were dead with my eyes open. He then left the house with the valuables and drove off in my mother's car.

How were you able to initially emotionally cope and physically recover?

I know it was God. I only believed that I would live and I held on to my belief with all that was in me. I refused to allow this situation to win. Yet others may have thought and said that it was impossible for me to recover, I reversed those words as strength; trials are testimonies that give us fuel to move forward. My emotional and physical recovery came in steps. The more I continued to believe I would survive, the more the physical and mental aspect of my injuries healed. At the beginning it was very challenging on me because I had to look in the mirror at the bandages wrapped around my face and the staples on the side of my face to pull my skin back together. I had a tube running down my nose to my stomach to feed and a trachea in order to breathe. At that time I couldn't walk or talk either. While this was happening, my family would visit holding back their tears and pain to be support and strength for me. In return I also felt like I had to encourage them that I was going to be okay. The situation seemed hopeless but deep down inside I was determined to beat all the odds.

Did you fully recover? What was the long-term recovery process like for you?

Yes, but it took a long time. Even when I was released to go home I still couldn't breathe out of my mouth. The trachea remained for approximately six months before it was taken out. I had to believe I would breathe, talk, and walk again. Overall, it took about a year. However, my mental recovery was a drooling process that had many ups and downs. It was very tough on me. I lived about two to three blocks away from the tragedy. I use to panic late at night constantly looking through the blinds of the windows to see if someone was outside. Sometimes it would be so intense I would imagine people outside ready to do me harm. I was a nervous wreck when I was alone. Kids at junior high school would ridicule me because of the scars. I began to think I was the ugliest person in the world. If I ever got married, I didn't want kids because I thought my kids would be birthed with scars and I didn't want them to go through what I had gone through.

I build up anger, hatred, bitterness, and hopelessness. At times I wanted to rebel by getting involved in streets of gang violence, drugs, alcoholism, and crime. This was not easy at all but for some reason I never fit in and I realized it wasn't me. As I grew up, recovery was more of a state of mind. I had to change the way that I thought through the scriptures out of the holy bible. It gave me the recovery to believe that I was capable of overcoming any trial that I faced. One of my favorite scriptures are Philippians 4:13 (AMP) "I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency].

Did you miss a lot of school, and if so, how were you able to keep up or catch up?

I missed the whole seventh grade year due to the injury. The city paid for a tutor to teach me. Ms. Page was my tutor. She was wonderful and treated me special. She had a special gift that made me smile.

How did your faith keep you going? Were there any particular individuals who made a difference in your life?

Initially, after leaving the hospital and getting settled at my new home with my Aunt, it was very challenging. I hated God, the situation and myself. I was haunted by trying to figure out why God allowed this to happen to me. I allowed it to build up a wall from anyone entering in. I felt like I didn't deserve it, I was only a child. Therefore I gave up for approximately four years on life. I couldn't open up and refused to let anyone in to understand what I was going through. However, there were times that I knew it was God intervening. Certain family members were essential in keeping my faith. At various times each one was a vital part of my life line. My Aunt would not let me feel sorry for myself, thinking that I was handicapped or strange. She ensured I was treated like a normal child was. At times I'm sure it was hard on her dealing with me but she continued to instill perseverance to pursue after life. My Big Brother had to be my father figure while he was still young himself. He ensured I was properly taken care of. Moreover, I am grateful for all of my family because they dealt with my pains while they had their own. They never rejected me or stop showing me love. Love is what made the difference.

How did this horrific experience impact your life? Were there blessings in disguise, and if so, how did you manage to find them?

Changes for the better didn't happen over night. It took endurance through the sadness, discouragements, pains, hurts, and frustrations. I hated having to go through it and I wished that it never happened. I preferred my mother being alive. This incident turned my life upside down and there was nothing I could do about it. I never knew it was going to turn around but I continued to live one day at a time. It was as if I were in hell and there was no way out. My life seemed ruined. It was as if I were being tortured being alive. I just couldn't find the light at the end of the tunnel. When I was sixteen, I was constantly getting in trouble at home and at school. I decided to run away. While at school, many things were rushing through my mind. While in class I got into a fight. The police, fire department and ambulance came. It seemed like my life was about to get worse. However, all the charges were dropped and I was sent to visit my brother in the Army. He and his wife were heavily in church. Eventually, I gave my life back to God and my life greatly turned around. The more I learned and understood Christianity, the more my weaknesses fell off. All this time, I was missing the love that only God could give me. Because of His love I live and have a greater conviction to fulfill my purpose in life!

I know that you have a passion for bringing hope to others. Can you tell us about that? What activities are you involved with that enable you to minister or help others?

I believe that we all go through our challenges for a reason. Our challenge has much to offer. Initially, it may not seem like its worth the time because of the hurts it brings. However, when we face our challenge, look at it and deal with it, God turns the misery to ministry. Once we find that reason we must use it to the best of our abilities to give back to society. For this reason I live to encourage, motivate, and inspire those that can't get past the scar that changed their life. I have been involved with prison ministry, jail ministry, juvenile detention centers, feeding the homeless, donating gifts to abused and batter women and children, coached special Olympics, etc.. Also, I've spoken at various churches and its seminars, Nation Crime Victims Rights week, ICAN teen summit television show, radio stations, Jr. High Schools and book events.

Most of us can't imagine going through such a physically and emotionally traumatic experience, especially as a child. Yet our own struggles, regardless of what they are, have deep, personal significance for us. What advice can you provide based on what you've experienced and overcome?

I believe if we trust God anything that we are challenged to face is not so traumatic we aren't capable of overcoming it. Life is too short for us to hold on to the hurt and pain while the person or persons have moved on with their lives and we're still stuck in that same place of defeat. Yet it may be difficult initially, we can overcome it. Lastly, "Unless we forgive, we can not live!" In other words, we have to let it go. It's that simple.

What ultimately inspired you to write Scarred for Life? What are your plans for the future?

What ultimately inspired me to write Scarred for Life was the realization that my testimony was a tremendous victory that others needed to hear. I have told my story many times at various places and the outcome always encouraged and inspired others to not give up hope in God in their trials. I simply had a desire to encourage more people. So I wrote my story on paper. It was not easy bringing back all of those memories. There were many times I cried and walked away from the computer as I wrote. There were times I wanted to quit but I just couldn't. I didn't want my work to be unfinished. So I pressed and push through the tears and I completed my first book. Moreover, I'm not finished yet; I am now working on my sequel and hope it will be finished by October 2009. My ultimate goal is to make a movie out of the story.

Do you have a life motto or words that you live by? If so, why these words?

"Unless you forgive, you can not live!" I am determined to fulfill my purpose in life. Every trial that I face is a stepping stone for me to move forward. It is impossible to enjoy life while I'm holding onto hurts and pains. I refuse to let a scarred situation hold me back from living life. So instead I let it go. By doing this it takes away the sting out of it and makes it easier to deal with.

"Societally" Disabled: An Aberration Story

... I now see Don’t You Forget About Me by Simple Minds as a sort of anthem.

Have you ever considered what it might be like to rely on others so much that you're prohibited from having your own home in the traditional sense? Aberration Nation has welcomed many guests who have shared uplifting stories of survival and hope; but we've not yet met anyone like Kev. If you think you have challenges, wait until you hear what courageous Kev has to share. This intelligent, personable forty-something-year-old man lives in a home for the disabled. Before that, he was confined to his parents living room. Look around now and count your blessings. Kev does ... and he often shares what he's added up on Facebook.

Despite its popularity, quite a few folks criticize Facebook, saying it's a poor avenue for communication ("get off your butt" or "just pick up the phone") and that it's a self-centered past time. Well, for my guest today, it's a fantastic way to communicate; sorry naysayers, he can't get off his butt. And for him (and many others) it's not self-centered, it's therapeutic and out-of-the-box wonderful.

Yes, I met Kev on Facebook.

He has more Facebook friends than anyone I've come across! Perhaps the most aggressive internet marketers have as many. Yet, Kev isn't selling anything. He's simply offering friendship to thousands of people like me. His daily posts oscillate between things like "another bloody day" and "life is beautiful." When he has a "bloody day," his Facebook friends pop out of the woodwork (or cyber space) to encourage him. And in return, he encourages them. That's what I call beautiful.

It's obvious that many of Kev's Facebook friends are inspired by his ability to communicate with honesty and courage. While we should all strive to be positive about our lives, regardless of what ails us, it's also important to express our moments of despair. And your outlet may not be available to the next person; so what if it is Facebook? Who cares? It seems to have provided Kev with a link to the world that he and other "societally" disabled people often need.

This is Kev's story.

You describe yourself as “societally” disabled. Can you explain what that means, and how you are disabled?

"Societally Disabled" is basically a phrase I coined following a chat with a friend just before Christmas last year. It speaks to barriers society erects around us.

How did you come to be disabled and how did you cope early on?

I was born with Spina Bifida and Hydrocephalus on 27 October 1967. For, I confess, most of my childhood and adolescent years, I had a chip on each shoulder. I resented the fact that I couldn't do what others could do, such as go out with friends and go out on school trips to name two examples that readily spring to mind.

How has your attitude evolved over the years and what were some of the contributing factors?

Over the years my attitude has evolved. The best example of this is the move I had to make from my family home in September 2001 (the day before 9/11). Over time, even though I'm "societally diisabled, I've had to learn to be more independent and "plough my own furrow."

You live in a home for disabled individuals. What is everyday life like there? What do you like and dislike about it?

I have lived at The Dan Y Bryn Leonard Cheshire Disability home in Cardiff (UK) since August 2002. Life here is very similar to riding a roller coaster. There are both good days and bad. Two good things about my relocation were (1) my quality of life has improved markedly over time, in sharp comparison to my life prior to my move, whereby I was practically marooned in my parents living room, and (2) I along with two of my neighbors starred in the original series of Creature Discomforts. This was a collaboration between LCD & Aardman Animations (the creators, most notably, of Wallace & Gromit). The buzz phrase of the campaign aimed at the UK community was "change the way you see disability." This resulted in my seeing myself as very much of a disabled activist. Conversely, a downside is (and I don't mean to be offensive when I say this) but my neighbors here have a collection of conditions, which can make life very stressful from time to time. You just have to "grit your teeth."

Many people have difficulty imagining what it’s like to live a “societally” disabled life. How has being disabled molded you into who you are today? At this point in your life, are you happy with how you’re spending your time, and with the relationships you have?

That is a little difficult to answer. I guess that living alone (outside my family home) has helped me mature. I serve as the Deputy Chair of the Homes Residents Committee, and I used to serve as a Regional Service User Representative. However--and this may be perceived as wrong of me--but I have longed for the chance to work and get paid for it. Having said that, I was paid for my Creature Discomforts work. This, furthermore, has resulted in two appearances on BBC Radio Wales and BBC TV Wales (my local and national BBC stations). Nowadays, as a result of not being paid to do what I've done, I'm not doing quite so much. I still spend some time as a campaigner. However, I now spend a lot of time on Facebook. As well as this--and making a lot of good friends on Facebook--I also found Stacey, a lady from League City, Texas. She is, undoubtedly, the love of my life.

Despite the positive attitude you have today, I’m sure there have been many low points. Can you share some of those with us and help us understand how you were able to move forward amidst the struggle?

Low points? One that readily springs to mind, and that has pretty much plagued me, is that I suffer from depression. This stems from an experience that occurred shortly after my fifteenth birthday in 1982. I was watching a film in school, and I proceeded to have the most ENORMOUS headache. I was rushed to the hospital where I was placed on a life support machine in an intensive care unit for as long as I could without being rendered a vegetable. I have, for this whole length of subsequent time, battled against this demon. I can still guarantee that no two days are the same. I am moving forward though, thanks to finding love with Stacey.

What are the things in life from which you derive great joy? What are your pet peeves?

There is one thing I can pick out as a great joy, that, undoubtedly, is Stacey. As for pet peeves, one issue that really gets my blood boiling is lack of respect, in all forms, that are shown toward those of us who are "societally" disabled.

Some people who live perfectly “normal” lives fail to realize the simple blessing of good health. They continue to feel dissatisfied or become bitter that they don’t have “this or that.” What would you say to those folks?

Basically, I would answer this question by telling these people, YOU DON'T KNOW JUST HOW LUCKY YOU ARE.

What would you say are the three top misconceptions about folks who are “societally” disabled?

Well, in my book, we're seen as being unable to speak up for ourselves. Additionally, we're seen to be not very intelligent. (What about Professor Stephen Hawking?). Also, I feel that some, not necessarily all, people are ignorant of us. They feel that we are not that bothered, and they don't want to bother with us. To argue that point, I now see Don’t You Forget About Me by Simple Minds as a sort of anthem.

How can we best help people in your situation? What do you need or want from us? How can we, in big or small ways, add positives to your life?

Put briefly, the best way I can think of answering this question is to say, don’t ignore us, and give us the full equality, that is rightfully ours. Give us a level playing field and the same rights as everybody else.

If you could say anything to the world and to those who have crossed your path over the years in both negative and positive ways, what would that be?

I suppose, to the people who would, or have spoken negatively, I would take a leaf out of the book of Brian, The Bull Terrier, and just say Watch Me. Which incidentally, is being seen by the UK disabled community as every bit as iconic as Martin Luther Kings' I Have a Dream speech.

To those who have looked on me in a positive light, I would like to simply say thank you for your loyal support. It is MUCH APPRECIATED.

Final Thoughts on Teens

It's seventeen days later, and we're all grown up.

Thanks for visiting Aberration Nation during the teen event! I'd also like to send out a special THANK YOU to all the brave folks who participated, including Melissa Walker, Lisa Morguess, the four teens who shared their writing with us, and Josh, who opened up about losing his leg.

I hope all who visited not only enjoyed reading the content, but also found it thought provoking and helpful. I was hesitant to share the thoughts I had and poetry I wrote as a young person, but doing so has been a positive experience for me. Like my friend Lisa, I don't want to loose sight of all the things that happened in my life. Good or bad, they molded me into who I am ... and continue to do so. I'm still evolving. If my life had ended on that dark, hopeless Louisiana night in 1985, I would never have experienced (to name a few):

- telling my Dad how much I love him

- giving life to two beautiful daughters

- knowing the kind of love that heals wounds--the gift my husband gives me every day

- eating a bagel or drinking a martini

- seeing and playing in deep snow
- visiting Europe, Utah, Southern California, New York City, Puerto Rico, and Singapore to name a few

- camping in a trailer
- lying on the hood of a speed boat, racing through Lake George in New York, the wind in my hair

- winning a 5K run

- painting a mural on a Philadelphia building

- writing four books

- being a Director at one of the largest and most respected companies in the world, Johnson & Johnson

- being boss to many people, and having the opportunity to help them not only develop their careers but also simply enjoy coming to work
- promoting someone deserving to Associate Director and seeing her face light up

- seeing a Kansas sunset

- seeing Wicked and Phantom of the Opera on Broadway
- reading the millions of books I've found since then
- knowing my wonderful in-laws, who have touched my life
- being an Aunt to seven awesome kids
- reading a history my grandfather wrote about his life
- earning a BS degree, and then an MS degree in my 30s
- watching my daughters learn to walk, ride bikes, run, read, write, etc.
- meeting a million interesting people who have taught me that life is an absolutely beautiful jumbled mess
- learning to love myself

With all that said, here's some advice from Lisa and me (the runaway girls) on how you might possibly help a struggling teen.

With regard to the teen who looks fine and dandy, but is suffering (Penelope):

1) Listen for hints and openings offered to strike up a conversation about what's bothering him or her. (I often hinted to adults but they missed it every time.)

2) Don't assume the kid who appears to be the strongest, brightest, or most cheerful is immune to depression. Remember the signs of depression. Understand that there can be a difference between diagnosed mental illness and depression based on growing up in a depressing environment. I was taught to experience life a particular way; once I understood that I didn't have to look at life through the lens of my teacher, I began to break free of that sad lesson and find my own view.

3) Take the emotional pain a teen expresses seriously. Don't talk down to them, or treat their suffering as if it's trivial. Although they're young, they are complex individuals with deep emotion. (This happened to me numerous times, even with health care professionals.) Don't offer easy fixes to teens as if their pain is a passing phase. This makes them feel even more isolated and strange.

5) When you know a teenager is surrounded by dysfunction, don't assume they're fine just because they're smiling with a sparkle in their eye.

6) Find, create, and/or offer a safe environment where the teen can unload. Even at a young age, years of trying to keep it all together is difficult to break through. If they talk a lot about pain related to their social interactions, ask them about their family. If they smile and say they have a nice family, blah, blah, blah, dig deeper.

I was a tough nut to crack (and still am sometimes), but nobody even really tried ... I eventually had to bust my own nut.

For the obviously stressed teen who is acting out (Lisa):

There were so many obvious, glaring signs that I was troubled, and they were all overlooked. To this day, I find it just really disturbing that nobody reached out to me.

I was clearly withdrawn and depressed by the time I was in high school. My grades started to slip. I often went to school disheveled from abuse I had suffered just that morning at the hands of my mother. I even often got drunk on school grounds at lunch period and then went to classes after wards, and nobody ever picked up on it or called me on it. So, I don't know . . . I guess what I would say to adults is "Don't overlook the obvious!" I mean, it's a fine line, I'm sure. A certain amount of teenage angst and even acting out is to be expected, and I don't think adults should be right in every teenager's face offering/threatening counseling over every little thing, but I do think that adults need to just try really hard to be tuned in, to be able to recognize the difference between normal growing pains and signs of something more serious.

Thanks all!

______________________________________

Up next week on Aberration Nation, On Being Societally Disabled: An Aberration Story. If you think you have challenges, wait until you meet courageous Kev. He lives in a home for the disabled. Look around now and count your blessings. Kev does ...

Pieces of Penelope (1987, 21 years old)

Rolling and rolling,
Building and budding,
A cup that's somehow full,
Now,
Again,
Bittersweet emotions,
Confusion and peace,
It's overflowing,
This heart in tears.

***


Maybe right now I'm just trying to heal all the wounds. That does take time. I just hope it doesn't take a lifetime. Sometimes that's my fear ... I keep trying to make brass gold when I know it isn't.

***

Something heavy is moving in,
Illusive weight without a name,
It hangs on my mind, my heart, my body,
A deep long ago sorrow I thought was gone,
Slowly lurking, easing, teasing its way back
to my attention.

***

Isn't it comical the way things change, but sometimes emotions never go away? My life, of course, is different now. I refuse to believe that the relationship isn't completely over but I can be sorry that it is and that it was so bad. I wish I could change everything but I can't, and I'm sure it all happened for a purpose. I hope so anyway ... I guess only the individual can actually know how to make themselves happy. It's not up to anyone else to tell them how or try to make them happy. I can't believe I've actually developed some unselfishness compared to the way I used to be. Maybe there's hope for me yet!

***

The crooked hand of a hungry hunter,
Pierces his prey through a human heart,
The creatures falls, weakened,
Until a crack forms in its heart,
The hunter's stream of power and passion,
Soaks, drowns, devours me,
That familiar, glorious triumph he's learned to love,
For the moment ...
Then,
The passion gone,
The power dwindling,
He turns and faces what is left of me,
An empty carcass,
The shell of what,
Once upon a time,
I was.

***

I want to be sweet and unselfish, and just give what I can. It makes me feel so wonderful to want to give and not care about getting. God! I can't believe how selfish I've been in my life ... Outcomes are obsolete. The important things is that I'm capable of caring and sharing and feeling. I feel so full of love tonight. I think I need to cry. I feel so sad for all the time I didn't know what it was all about. I hope I never forget.

***

Alone is where the me exists,
The one I know,
Feeling others crowd these taciturn restless senses,
The stranger screams,
The me I fear,
Aroused,
Holding emotions paralyzed,
Memories peak,
Their painful piercing arrows through this mind,
Only when I'm close,
To love.

***

Gifts of light,
These friends,
Like November colors,
Leaves overspreading,
Hiding,
An uncomely selfishness that comes still yet,
The earth of me,
Humanity I fail to hide,
Level friends like composted leaves,
Effortlessly transform this unfruitful, filthy self,
Creating in me unimaginable fertility, beauty, and joy,
The stuff of life,
A garden full in bloom.

***

Uncivilized,
A place I found myself,
With you,
War,
Fought so long,
So hard,
They lost all reason,
Piercing bullets
Though my heart,
And platoons of tears
Raiding my camp,
My fortress,
Only to wash my wounds,
Clean of you.

***

Box of pain,
Filled with stains,
Tattered feelings left to waste,
And wither away until my spring,
That illusive season they say will come ...

***

Am I afraid to care
About anything?
I've lost my passion,
I thought I was happy,
Protected
From pain,
But now I realize
I'm protected also
From life,
The struggle,
The triumph,
It's all gone
Or so it seems,
Is this the price
I must pay
For others to say
I'm normal?

***

Some father's daughter,
A mommy's joy,
Millions,
Millions,
Sperm to spare,
The golden egg
Just waiting there,
His expenditure,
Mommy's there,
Loving,
Daddy's little girl.

***

Today,
Once again,
I traverse this broken road
Of bitterness, pain, poverty,
To my safe, secure job,
I see the children,
Their tear stained faces,
Barren feet,
Hearts secluded,
Ignored,
A mother holds her coatless child in one arm,
Her cherished cigarette in the other,
"Shut up! Shut up!" she growls,
The tiny spirit beaten,
I catch, perhaps,
Innocence,
Escaping,
I think of my own child,
My own childhood,
As I walk a little faster,
My not-so-perfect life goes on,
As does one child's lonely hell,
In what seems tomorrow, he is a man,
Searching,
Desperately seeking,
Something,
Only finding me,
Still silently traveling my familiar road,
The road to a nation's nowhere ...

_________________________________________

For more pieces of my story, visit these Aberration Nation links:

The Mother Ship
Alone in a Crowd
Curve Ball Salvation
Daddy Didn't Want Me: An Aberration Story
Pocket Full of Sunshine, Closet Full of Bad

I'm Stubborn: A Teen Aberration Story

... people view this trait of mine as a bad thing, as a flaw on my part.

Stubbornness can be described as refusal to adapt one's perspective, or being reluctant to cave in to the views of others. It's having a concrete standing on a topic, and not letting anything stop you from thinking that way. And by most, stubbornness is viewed negatively, as an obstacle that prevents us from moving forward with our goals, our relationships, and our lives.

Stubbornness is my aberration.

I am hesitant to admit another person is right and even when the majority of proof shows me that I'm wrong, I argue to defend my point, no matter how hopeless of a cause. When working with others on a task, I push my own ideas forward, dismissing the thoughts of others. And when arguing with accomplices, I don't give up until I win. And thus, people view this trait of mine as a bad thing, as a flaw on my part.

But though my stubbornness appears to be a hindrance to myself and others, it is something that helps me succeed beyond the expectations of all others. My stubbornness helps me earn high grades in my classes, as with my persistence, I never settle for anything less than a perfect score. In group-work, I always push work on people, thus resulting in a better job done overall. And by always questioning views that are different than my own, I learn more about the topic I am inquiring about.

I have grown to level out my stubbornness. I attempt to listen to the opinions of others completely before immediately declaring them as wrong. During group-work, I try to have others assigned to specific tasks, and only focus on my own job. And in general, I listen to people before spontaneously jumping to conclusions and making judgments. While I tone down the negative sides of my aberration, I attempt to enhance the positive. I aim higher in grades and overall goals, always trying to surpass what I previously accomplished. I form a concrete code of values by sticking to my ideals and points. Thus, I have come to balance my aberration.

One specific case of my stubbornness dates back to fourth grade when I felt a certain answer to a math problem my teacher gave was incorrect. I forced my explanation on the teacher, insisting my solution was the correct one. Eventually, the teacher brought over the head of the math department, who confirmed my solution. Though I was right, the stubbornness I used to convey my opinion was uncalled for. I acted in an obnoxious manner, not letting the teacher skip the problem and move on to another. I was so rude that even my classmates were angered with me. The next day, students kept on showing me the golden rule of the classroom: “listen to the teacher”. However, I did develop a reputation of always having to be right. In this way, stubbornness is both something positive and negative in regard to my life. Yet I have come to accept it as a definite part of my life--a part of me that will stick to me no matter what happens, no matter how much time passes, and no matter what type of person I develop into. Stubbornness will always be my aberration.