ed56ebb34e4e9910ce02509131e2bc53

(warning: contains disturbing, graphic content)

My brother was born in the 1960s at a time when children with disabilities as extensive as my brother’s (Rubella Syndrome, cleft palate, severely developmentally delayed, legally blind, hearing impaired, heart condition, etc.) were placed in institutions at the “suggestion” of their doctors. Without knowing the specifics, all I knew was that my mother was devastated and took to her bed sobbing, my father very angry and was rarely home, and my brother cried all of the time because he could not eat through the gaping hole which was supposed to be his mouth.

My mom chose not to follow the doctor’s “orders”, which was highly unusual for her because she was a person who NEVER disobeyed authorities. Yet, she knew in her broken, sad heart that “putting him away” was not the right thing to do. Even if her life was changed forever, Curtis would remain at home. She slowly got over her devastation, and my father was home more often and Curtis was fed with an eye dropper. I loved feeing him as he gently gurgled and mewed like a baby kitten. My brother was a part of our family, and went on to live a full and exciting life as a member of our vagabond family.

My dad loved to drive and my brother loved to ride. He especially LOVED tunnels. Dad would go out of his way during our travels to go through them, such as the toll tunnels in Pennsylvania. Riding through the darkness, hearing the swoosh of the engine motor and the echoes of the other cars would send my brother into fits of giggles. Curtis also loved the excitement of paying tolls. Hand over hand, I would help him lean out the passenger window to drop the coins into the basket, and he’d clap his hands with delight. Life was great, and Curtis was always a full, participating member of our family and our community. Our life was “normal” to me.

It wasn’t until I went for my first job interview as a rehabilitation professional at a state institution that I learned what my brother’s fate would have been had my mom decided to do as her doctor advised. The first and LAST ward I toured scarred me for life. The “dorm” was rows, 20 deep, of metal beds bracketed to the floor. Most had some semblance of a sheet on them, some not. “Blankets”, or what USED to be blankets before they became worn and dirty,were randomly thrown on the bed. Many were stained with a dark brown substance that I assumed was NOT dirt. In the “kitchen”, rows of large baby bottles filled with a mushy substance substituted for a lunch.

It wasn’t until I went into the “day room” that I became physically ill. The smell of vomit, feces and urine attacked my nose so I wanted to hold my breath. In the large, tile room, with no windows to even indicate it was day outside, sat about twenty-five people, looking more like wild creatures. All ages, men and women, young and old, sat and rocked their bodies, flailed about and screeched. Hair dirty and tangled and disgusting. Eyes either glaringly wild or no emotion at all. Most naked or with minimal clothing. There was a large drain in the middle of the floor where human waste congregated; feces, vomit, urine. (Apparently, a large hose was used to “clean” individuals and it was all shoved into the middle of the floor, hopefully to go down the drain.) No attempt at programming. No attempt at socialization. No furniture because, I was told, they would either throw it, break it or try to eat it. Most of the residents, I was told had never see life outside of the institution, coming to the institution as infants. (Thoughts of my beloved brother flashed through my mind.)

It was obvious abuse was rampart on the part of the residents, swatting and clawing at each other as I stood there. A few residents, deemed the most violent, were in shackles. The two ward attendants were obviously immune to the sight because that would be the only way possible for a human being to do their job.

I left the tour, vomited and cried all the way home. The scene still haunts me.

FORTUNATELY, this was during a time when family members and professionals started to come together in outrage to demand better treatment. To demand actual services and activities and better living situations. FORTUNATELY, these groups sued the state to hold them accountable for these horrendous living situations.

The passage of even more legislation allowed four unrelated individuals to live together in a house without having to get zoning variance. Group homes were born and life changed forever for individuals with developmental disabilities!

Thank God that the pendulum has swung the other way. Now, individuals with developmental disabilities are recognized to be individuals of equal value and respect. They can choose their own clothing, what they want to eat, where they want to go, and what they want to do. You can see them out bowling, delivering Meals on Wheels, and eating at local restaurants. They are shopping for food at the grocery stores, attending churches of their choosing, and going on cruises. They can go rock climbing, paragliding, and ice fishing. They can order sandwiches just the way they like them, and drink frozen strawberry Daiquiris. They are living life to the fullest, with staff no longer concerned with cleanliness, but with focusing on dignity, free will and respect. Next time you see a person with a developmental disability in the community, smile at them. They will probably smile back, at last!

**************

To read more about my life with my brother, please read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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Comments on: "We’ve Come a Long Way, Baby!" (75)

  1. Yes, thank God things have changed. Things were very difficult years ago. I grew up with an older sister (born in 1940) who had some serious health issues including cleft palate and when she became a teen, they discovered she had klippel-feil syndrome. They did several surgeries when she was a young child and the doctor told my mom that my sister would not do well in life, probably be in a wheelchair by her twenties and dead by the time she was in her thirties. Thankfully, my mother didn’t listen to the doctor and encouraged my sister who became a nurse with an MA in nursing and is now 73 and still going strong. We need to think positively about anyone with a disability, either physical or mental and give them a chance to succeed in life.

  2. Thank you for a first hand account of how far mental health care has come and for sharing your story. Another illustration of how mother’s instincts are often wiser than doctor’s orders.

  3. This makes shocking reading…. But you’re right, we need to be reminded from time to rime about how things have changed, as well as how this were. Thank you x

  4. I used to visit a ‘mental hospital’ in Scotland when I was in my 20’s

    I would go every Wed afternoon, weather and time permitting, just to take a dozen or so of the patients for a walk round the grounds so they got some fresh air. Some times we’d have a picnic. Sometimes we’d kick a ball around.

    These were the lucky ones. The ones the staff considered unlikely to pose any threat to me (the ‘institution’ housed a number of ‘patients’ who had committed violent crimes, including murder)

    The unlucky ones, the most seriously mentally disturbed and/or learning undeveloped lived in conditions such as you describe – mostly naked (if they were given clothes they would rip them up so the staff stopped giving them clothes), covered in filth and hosed down with water when it was time to clean them

    Some inmates had been placed in the institute by the courts and doctors, the majority had been placed there by their families and subsequently abandoned

    Fortunately, as you say, things have improved and we no longer treat vulnerable people in such a cruel and demeaning way, but there is still room for improvement

    One of the charities I support here in the UK, sets up small village type communities where people with physical and mental disabilities can live and work together, helping each other to overcome their difficulties and live as full and happy lives as possible. They learn life skills, and whether it’s growing their own produce on their farms and selling to locals what is surplus to their own requirements, or making and selling craftwork, they aim to be as self-sufficient as possible and contribute to the local community amongst which they are based

    http://tinyurl.com/ncqseyc

    Too often in the past, we (as a society) have tended to dismiss the disabled from our sight and care, or (at best) looked after them grudgingly, considering the cost of their care a drain on our resources

    The Camphill Family, on the other hand, recognises that the disabled, too, can live happy and fulfilling lives and can each in their own way make a contribution to society, if we but provide them with the opportunity to do so

    • What a wonderful comment. Unlike me, you actually had a hand in making life better for some of the residents. God Bless You! It never ceases to amaze me that the general population somehow think they are better than “them.” But we are all equal and alike.
      Thank you for making a difference!

    • powerful post! You brought me into a world I never knew existed, and so blessed to hear the ending. The comment from duncanr was really amazing as well. I would love to visit that community some day. My dream is to see the same type of dynamic set up for troubled and at risk youth. I lived by a boy’s camp that taught them how to build there own cabins, they also had a restaurant open to the public and some of the boys
      went on to become famous chef’s.

      • I agree with you about such a place for troubled boys. 99% of the time I think those “troubles” come from abusive parenting which caused mental illness. (Two of my kiddos were affected this way by abuse, and, if I didn’t keep a close eye on them, would be at risk for all kinds of trouble!)

  5. I love the idea of people being people. My employee works with a Life Training program… some of these people who would have “lived” and died in institutions are better workers than so-called normals. I think they care more. BUT… there is still a flip side. Where do you draw the line on who can be safely integrated, and who needs to be kept under better watch for their own safety and that of others?

    • That SHOULD have said “My employer”!

    • I have learned first hand that even those who need to be watched for their own safety and the safety of others can often do well with a one-on-one. My daughter, who has serious PTSD issues and can become violent at the drop of a hat, is learning to integrate well with the help of a one on one aid who guides her and intercepts oncoming PTSD episodes with relaxation and alternative relaxation techniques.

      • One on one works. Too often, we have two councilors from one house come in with 5 clients. Only one boy is potentially dangerous, but the one day he did have a melt down, it was pretty tense until one councillor and a cashier with experience got him out to the van.

      • The secret to success is a true commitment to provide the services to make things work. Without proper staffing, it won’t be successful. I am very fortunate to live in an ares that truly believes in doing what is right, even if it is expensive.

  6. Wow. Powerful piece. Thank goodness for change.now we need a similar thing to happen in Australia in old people’s homes.

  7. Thank you so much for this. We often forget that we are just a blink away from disabilities. My dad used to work in a group home and said when asked if that was difficult: “It’s much easier working with people who know their disabilities than with people who think they don’t have any.” Thanks again … I love coming to visit here!

  8. One move toward greater dignity came when a man was charged with helping these individuals take charge of their own toilet routines. The successful outworking of his labours resulted in an even larger audience as his book, “Potty Training In a Day” eventually hit the shelves for parents everywhere (I passed the book along and can’t remember the author!).

    I used that book and successfully trained my own kids, “in a day.”

    When someone moves with the resolve toward respect and success, astonishing blessings ripple outward, affecting everyone.

    You are a gift, and I am grateful to receive these outworkings of your life.

  9. Our daughter is needing close to 24/7 care and although I am desperate to find help/care and sometimes ready to pull my hair and scream how unfair her life/our life is at times, at the end of the day I wouldn’t want her in any other place but our home. I can’t imagine that there was a day when our children, our babies, were thought to belong somewhere else, a place no human should have to endure but yet there was a time. Sigh. We have come a long way and I think we still have a long way to go which I am sure you would agree with where parents aren’t so isolated and even disadvantaged (can’t work because there are no healthy, safe child care options). Great post!

    • I have such empathy for you. As I’ve said before, I’ve been very lucky in accessing services to ensure my children have been successful, including one on one service and home based treatment programs. Our state even has a childcare option for children with disabilities…special funding just for daycare. I have to admit, if I was unable to work, I wouldn’t have been able to survive raising these kiddos. I am also a firm believer in medication. I know this can be a “dirty word”, but it has drastically increased the quality of life for my children. One, who was super ADHD, can function well on medication. Another, who was obsessed over everything and unable to function, can function well with medication. Even my daughter with PTSD is much calmer and able to cope on medication. I don’t use it to sedate my children, but to enhance their ability to more fully participate fully in life.

  10. You actually made me cry. I have read heaps of blog postings and none have made me cry. Humans are so cruel. Bless you.

    • I did cry for the way things were, but, more importunely, I cry tears of joy for the way things are. Most humans are wonderful and caring and want to do the right things.

      • I work with street sex workers in Australia and they are extremely marginalised and vulnerable people who are always being exploited and finding themselves in dangerous situations with bad people. Then I think about how we treat our prisoners and people with mental illness and etc. It just seems we are all capable of great kindness and mean spiritedness. Thanks for your reply. I wonder, how do you self care?

      • I’ve learned not to take things to heart. If I thought about the horrendous early childhoods of my two children who were so severely sexually abused that they developed severe mental illnesses, (PTSD and Dissociate Identity Disorder,) I would not be able to function. I try to move forward in a positive manner, and that’s how I take care of myself. That, and bubble baths playing Scrabble on my phone…

      • It was the bubble baths and Scrabble that I relate to. But I love your attitude. Go girl!

      • Such a practical, loving heart…you resemble the One who loves YOU…

  11. Thank you for shedding light on the reality of the evolution of conditions for the disabled. This is a fabulous post!

  12. stephie2010 said:

    Wow! I’m glad we’ve come a long way. Reading this makes me sad.

  13. Thank God, indeed, that your brother was spared the nightmare of state run institutions of that time and thank God that all of that horror has changed. Great post.

  14. I have to say, I’ve come and gone from this post several times wondering if I should reply or not. I was a counsellor for 11 years in modern day group homes and I don’t think they’ve come all that far. Yes, they are much better than the picture of the old institutions but it’s not somewhere I would ever put my child or recommend to anyone to put their child. Praise to anyone who raises their child in their own homes. That is always the best option.

    • I live in a state where the group homes are awesome! My brother lived in one as my parents aged into their 80s and the staff there were caring and patient, my brother always had the right to make choices and be treated with dignity. He was able to go out to Dunkin Donuts daily, HIS choice, getting the drink and donut of HIS choice. He passed away recently and the staff and residents all came and cried at his funeral. One of my other sons was in a group home because with his psychiatric diagnosis he could become violent. Again, the staff was caring and he had a high quality of life until he was able to improve his behavior and come home. Yes, being in a family environment is best, but in our state, group homes are also a good option. (They were developed and regulated by three aging legislators who had children with severe disabilities.)

  15. Thanks for sharing your uplifting story, a beautiful reminder for the Christmas season of one more thing to be thankful for!

  16. Oh my goodness. That is just horrifying. Thank goodness things have started to change.

  17. People then at the time know nothing better yet families tend to give up the so called “different” children. Your mother deserves a medal for keeping your brother and you as well for educating us. Blessings to you and yours.

    • The culture back then was to put children with disabilities into institutions and most people followed along because they didn’t know any better. My mom bucked the trend, and I learned that children with disabilities could live awesome lives like everyone else, as evidenced by my own five children. If I hadn’t learned that lesson at an early age, I probably would have stopped after my first son was born blind. I am so glad I didn’t because I couldn’t imagine my life without my awesome kiddos!

  18. My husband is a caregiver (called a Direct Support Assistant here) at one of the group homes in our area. The residents are living life as fully as they can. One of the residents goes to the movies at the local library once each week. I’m proud of the work my husband has chosen to do. Often it isn’t a ‘pretty’ job but it’s so necessary and appreciated.

    • Your husband is such an awesome man! Because of his work, someone can live a full life. SOOOOOOO much different than the way it was years ago! I”m glad that “society”, for the most part, has decided to accept people with disabilities as equal, valuable people. And for those people who don’t feel that way, I say shame on them…the tables could easily be reversed!

  19. What a heart-breaking account! I remember once when I was about 12, my mother took me to visit an elderly great-aunt who was in the “State Hospital” with dementia. I didn’t see sights as awful as what you saw, but I was horrified by elderly women tied into wheelchairs, drooling onto trays, and people ranting and raving. It was enough to drive you insane if you weren’t already. I’ve recently been involved with a family from church, helping with their 19 year old daughter who has been in the local mental hospital since Sept. 7. Of course I’m not allowed back in the commons room when I visit so I don’t see that part, but although it’s far from a walk in the park for the clients, it’s a lot better than it used to be!

    Your mother (and father, but especially your mother) deserve to be canonized! Not only did they change your brother’s life and yours, but I’m pretty sure you have become the wonderful parent you are because of their example.

    • I am forever thankful to my mom for teaching me an important lesson early in life.
      My kiddos have been in psychiatric hospitals at various times for their mental illnesses and they, too, have transformed into facilities which provide therapeutic treatment to stabilize the situation so the kiddos can come home as soon as possible.

  20. Genevieve said:

    There is a man in our community that lives in a group home. We see him often in public. My autistic son is drawn to jim and vice versa. I am so glad that they are able to say hi to each other, I know fifty years ago this would not be the case.

  21. Jenna Salamon said:

    I am sitting at work reading this and there are tears in my eyes. How horrible. I’m so glad that your mother chose to keep your brother with your family. It sounds like your childhood was fun. :)

  22. At last is right! Sometimes it depends on how you look at it. Sometimes I still think we have a long way to go, but when I read something like that I realize we have come a long way from the way it used to be. But there’s other times where I think we still have a long way to go. Even though I want it to be it will never be perfect. I don’t want it to be that way for me but to be that way for other people. But I realize that will probably never happen. A handicap person will never hold the presidency, or be part of congress unless things drastically change. Which I am striving for and realize I can’t do it by myself. All of us handicaps have to come together to make things better for us, or it’s just going to remain the same. In some respect we are still being outcasted, we are still being put into a classification by ourselves. To some people they look at us and say we can’t do anything they can do, but we can. But it will never change in their eyes until they get up to Heaven and realize what good we can do. We can do everything as good as good as they can only in our special ways. I admire you for being able to tell other people how it really was. It’s amazing how it’s changed but we still have a long way to go. Like I said before it will never be perfect. I am not blaming anybody for that, I am just stating the facts.

    • I have such empathy for you. So much of it depends on the community in which you live. My 5 kiddos have disabilities and I have to say they have been leading full, happy lives. I wouldn’t say a person with a disability couldn’t become president…there once was a time when no one thought an African American could become president!

      • You’re right it depends a lot on where you are living. My city and surrounding cities don’t support handicapped very well. In fact, I had to start my own organization for people like me. Of course they are younger than me. I thought the younger population needed it more than the older ones. Because the younger population had more self esteem issues. That was one of biggest problems when I was in school. I had problems overcoming poor self esteem. If you are wondering what this organization is, it’s Sluggers Little League. You can find it on facebook. It is the second type of this organization in my surrounding county. Presently, I am doing it for two counties. We do all this by donations. I started out with two teams and now we have up to four teams to date. We are always looking for donations even if they are not local. Contact me if you want more information about this type of organization. I think at one time I blogged on this topic.

      • That is so awesome! You are definitely showing that people with disabilities have wonderful abilities that can help others. Bless you!

  23. WOW! you are a wonderful person. Thank you for sharing.

  24. I work for a non-government disability organisation. I began as a support worker and now work in administration and finance however still have daily dealings with out clients. We ave 3 group homes and also watch over three individuals living in their own homes in the community. We run day services for those who have children at home that like to come out for the day and learn and have fun. We often remark that the clients have a better social life than we do. :) It’s all about treating others as humans.
    As another of your commenters said though, it needs to occur in our old age homes as well. :(

  25. Everyone should have a right to their life. Good post :)

  26. Things have changed so drastically since the 50’s and 60’s. Thank God! Growing up in my home much of the time was a young boy with Down’s Syndrome who had been institutionalized. I don’t have any idea where my mother learned of him. I know he was not a relative. My mother, however, could not abide the state situation and somehow managed his periodic release to our home. No one is still alive who would know the details but I remember the enrichment of our lives when Jimmy was with us.

  27. So glad that things have changed since then. That story makes me sad. Thank you for sharing!

  28. I love your blog! This story is really eye opening. Thank you for sharing. I’ve nominated you for the Versatile Blogger’s Award. If you’d like to accept, the instructions are on my blog omasheartblog.com. I’m glad to have found you and look forward to following you and reading new stories. Cheers!

  29. mhurley886 said:

    If we could all take time to enjoy simple things, like going for rides through tunnels (which I love too) and see the world the way your brother does, and see the joy in life, then maybe we’d have a better society… and, I applaud your mother for not sending your brother to that institution, because so many people were just left and forgotten there. People are so afraid of what they don’t quite understand that they’d rather turn away from it, its so awful. I am glad for you and your family, and it sounds like there is SO much love in your family!

  30. Your story shows how people can stand up and cause positive change. People with disabilities, like all people, should be allowed the freedom to live dignified lives.

  31. keeping it all together with 7 kids said:

    You painted quite the picture in my mind. Standing up for what we believe in and making positive changes is bravest thing anyone can do.

  32. Reblogged this on Hunt FOR Truth on wordpress and commented:
    Rubella, or German measles, is most dangerous to your baby if you catch it during the first 16 weeks of pregnancy. Rubella can cause miscarriage, stillbirth or debilitating birth defects. Defects at birth may progressively cause future damage to a growing child. I read about this as my second son was about to be born. My wife had contracted rubella in her first trimester. Our son was breach and midwives took over and I was sitting there in shock already. The birthing suite contained medical apparatus for emergency situations – it was already known that my wife had contracted rubella – we’d been strongly advised to terminate the pregnancy when she was still less than 16 weeks along. My wife could not. Anyway, I picked up her medical chart and thumbed through it. I thought it might ease my frights. No chance – this chart contained a complete description of the horrors that were highly likely to occur. I won’t go into all of it – most of the same information I read happened to Linda’s brother Curtis (http://5kidswdisabilities.com/2013/12/07/weve-come-a-long-way-baby/).
    I was now deeply in awe of my wife’s resolving to have been going through this and I was telling myself to breath as the midwives were assisting with the birth. I prayed. We’d prayed together during the entire pregnancy and I’ll share about that maybe another time. My son was born – completely healthy – huge at 11 pounds 1 ounce and over 23 inches long. He is a grown man today and he’s never had damage from the rubella. A week or so after his birth, my wife and I learned from a follow-up visit that the placenta had been analyzed and that it had been extensively infected with the rubella.
    When I read about the troubles and triumphs here at wordpress – I count my blessings.
    We all will in some way suffer. Yet, we all in some way will grow. I pray that our progress will bring us all home to God’s Loving embrace. I see in my heart’s eye that all suffering is as though there were never any such thing within God’s Love. I pray that you too may see that this is so.
    ~ Eric

  33. […] Reblogged from Raising 5 Kids With Disabilities and Remaining Sane Blog: […]

  34. Thank you for writing this. Great piece. I’ve been researching early psychiatric care for a book project and found many accounts similar to yours, but your personal account was very moving.

  35. Thank you so much for sharing your experience. Thank God things have changed! Not only are the institutions better and group homes have been established but these individuals are also able to receive an education in the same schools as their non disabled peers. We’ve got a long way too go, but yes we’ve come a long way!

  36. Hello, I really loved that your dad would go out of his way to go through tunnels for your brother. I completely get that :)

  37. Have you read Rachel Simon’s The Story of Beautiful Girl, which is a novel about a girl who in institutionalized but eventually finds her way out? It is beautifully written. I will also take a look at your book; it reminds me a place that was in my hometown but closed and torn down. I never saw the inside of it but can only wonder what it may have been like. Thanks for sharing your story.

  38. Thank you for the very moving account of institutional life that is now part of history. I worked in Pennsylvania for a year and a half in a ward for men with sensory and mental disabilities. We had a locked kitchen, food delivered on a cart from the institution kitchen. I used to unlock our ward kitchen and take our youngest man in, blind and disabled, and help him pour juice from the large pitcher we kept on hand. I had no idea how to teach a blind person, but used my instincts. I had him put a clean, washed finger in his plastic glass so he could stop when the juice reached the tip of his finger. It worked, but made me sad that the extent of what I could teach was so damn limited.
    I believed it was an inhumane way to deal with children and adults, and through a lot of hard work those institutions were finally closed.
    The eternal question; why do we so mistreat those who already are the most vulnerable in any human society?

    • I am sure that that young man greatly appreciated your efforts.
      I have to say that I have found treatment a lot more humane and understanding in our society today. There are still some people who do not treat individuals with disabilities as equals, but I optimistically like to think it is because they don’t know any better…they don’t take the time to appreciate the good points that exist in everyone. Sometimes you have to look hard and be creative, but there is good in everyone…

  39. I am a Direct Service Provider in Kentucky. I do personal care in the mornings for a man who lives in a staffed apartment building, with a roommate. The staff is in charge of getting 20-odd people up and medicated and off to work or adult day programs, and R.’s physical disability means it takes an hour of one-on-one to get him up, so he has his own aide. Then he goes across the parking lot to his adult day program three days a week. The other two days, he’s out with his Community Living Support person: grocery, physical therapy, visiting his mother, going bowling or to a movie. I also do personal care three evenings a week for a woman who lives at home with her parents; I giver her a bath and give her mom a break, and we play in the tub and work on communication. She also attends an adult day program. I love my work, and would do it full time if I could afford to–but it doesn’t pay enough. R. has had five CLS workers in the past year. One left because of money, one shouldn’t have started, one filled in short-term, one left because she got tendonitis and could no longer help him transfer. We hope his present one will be able to stay a long time; she’s great. Luckily, R. loves everybody and always enjoys making a new friend, but he misses the people he’s worked with who have had to leave. I now work with the agency in an administrative position, which pays barely enough that I might be able to stay–but it’s the Direct Service Providers that make a real difference in people’s lives, and they need to make enough money to stay put long term.

  40. […] institutionalization, a common practice in those days. After barely making it through an institution tour, Donald’s parents decided it was not an option for the family. Donald was raised as a typical […]

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