For all the problems with America I am lucky, I am lucky that I live in a country where community based services were there to help my parents when I was diagnosed with Cerebral Palsy at 1 year old. Children and young people with disabilities in less developed countries aren’t so lucky. Today I learned a disturbing statistic 80% of children in orphanages aren’t orphans. They are there because their parents or family feel ill equipped to take care of them. Not surprisingly alot of those children are disabled.
What did J.K Rowling do after creating Harry Potter and his Wizarding World and putting her name into the world’s pop culture history? She created a non profit Lumos a organization committed to finding solutions to the problems children and famlies face. Solutions that don’t involve orphanages. From the Lumos website
Across the globe 8 million children are living in institutions that deny them individual love and care. More than 80% are not orphans. They are separated from their families because they are poor, disabled or from an ethnic minority. As a result, many suffer lifelong physical and emotional harm.
Last year Lumos built the building that will house a school for disabled childrebn Maldova.. This year they are raising money for special desks, eating utensils, walkers, wheelchairs, handrails in the bathroom even a hydrotherapy pool.So if you know me, for my Christmas gift help the school that Harry and the Weasleys and the entire Wizarding World built because education and family are the real magic and every child deserves to have both. Below is a link to the indiegogo campaighn where you can donate. They have met their goal but trust me that stuff isn’t cheap amd they will use every bit of overflow.
A few years ago my mom found the card they attach to the end of a baby’s crib in the the NICU. My dad had apparently saved in a small yellow softcover baby book with a stork on the front. I learned a few things when I saw that card. One: It is one thing for your parents to tell you that the preemie baby that grew up to be you was tiny, it’s another to see 17 inches in a stranger’s handwriting and realize that you really were smaller than most of the dolls you collect. Two: I didn’t realize that after delivery the cards on the cribs are given the mother’s last name by default, which may or may not be the same as the father’s Suffice to say the the name on the card wasn’t either of the ones I’d expected so it through me for a loop until mom explained.There is nothing like learning a previously unknown detail of your birth story! I also learned that my dad wasn’t present at my birth, I don’t hold it against him, I WAS early after all and he was out of state apartment hunting for the soon – to -be three of us. I’m sure that had I arrived on time he would have been there.The relationship between us hasn’t always been easy. I think he relates more comfortably with my younger sister which may have something to with the fact that she is able and I’m not or nothing at all. I do know a few things though. When mom found the baby book with the crib card she said, “Here, there’s something in there your dad saved from the day you were born.” When I got my hand cycle ( think of a Big Wheel you power with your arms instead of your legs) he sat in the driveway and put it together for me the same as I watched him do with my sister’s bikes over the years.When I rode it the first time he cheered just as much ( if not more ) as if I were six with my first big kid bike and no training wheels even though I was closer to twenty six.
Dad works grocery. he has seen countless people, mostly women bring their toy sized dogs into the store with them. Every time he sees this he asks them if the animal is a service and waits for a no or the blank stare that means they have no clue what service dog is before politely asking them to leave.I’m pretty sure that before I became obsessed with idea of getting one at the age of thirteen he didn’t know that much about them .
We may not always communicate as clearly with each other as we’d like to, but I’ve seen the things you do Daddy, I love you too.
Growing up most of the kids in our neighborhood thought of my parents as the “cool parents”. Not because there weren’t any rules, believe me when both of your parents have served in the military there are rules. They were, and still are, considered cool because they would listen to both my sister and I and any of our friends who came to them with problems. Most of my friends have less than stellar home lives in high school and so my parents and by extension a lot of the rest of my family became anchor points for kids looking for something stable. As it turns out, I know several people who have active drug abuse issues going on through high school. I did not realize this for several years because my friends had enough respect for my parents and their home not to bring those substances around. I know for a fact that for some of my friends my parents acted more like parents to them than their biological mom or dad ever has. This post was inspired because I read a post here that said ” When a teenager says to someonem “your parents are so cool,” it really means, “I don’t realize this now, but later in my adult life, I will look back and judge your cool parents for being so stupidly insecure and permissive.”
I am not saying that some parents that teenagers think are cool aren’t permissive and insecure in their role as parents. I am merely saying that from my experience being known as the “cool parents” doesn’t automatically make you permissive or insecure. Growing up my sister and I were expected to maintain at least a B average in school. We were not punished for getting a C in the subject so long as we had put our best effort forward. Math beyond about seventh grade level in them always has been the bane of my existence no matter what I do therefore a C was acceptable when it happened because they knew I had put every effort into getting the best grades possible. By contrast if I had gotten the same grade in English or History, both subjects which come much easier to me you can bet I heard about it for quite a while. In case my parents do read this and they might because my blog posts are linked to my Facebook, it’s 28 years later, I still think you are the cool parents and I wouldn’t change a thing.
Yes parenting a special needs child is different and in lots of ways more difficult than parenting a typical able bodied child but I believe that when you make the decision to become a parent you accept the possibility that things might not go exactly as you hoped. Murder is never the answer and being born with a disability isn’t a crime If you’re feeling overwhelmed talk to somebody call CPS anything is better than harming a child or adult who had no control over the fact they were born disabled.
That is a picture of my paternal grandparents headstone, I never got to meet either one of them. My dad is the youngest of three boys (I believe there had been a baby girl before my oldest uncle but she was stillborn). I suppose you could say that my father was an ‘oops’. My grandmother Eileen was diabetic and after her second boy, my uncle David, was born she was strongly advised against getting pregnant again due to the impact it could have on her health. I’ve heard rumors that what led to my father’s inception was a birthday present of sorts to my grandfather. When she turned up pregnant again my grandmother’s response was to walk up to my grandfather call him a bastard and slap him across the face so I’m not sure how true the birthday present rumor is. On a side note my grandmother’s reaction has become something of a tradition at least for my folks, I know for sure that was how mom told that she was pregnant with me and I think that maybe how he found out about my younger sisters impending entrance to this world as well.
The doctors were right, the last pregnancy did not do her health any favors, she died with my dad was 10 years old. I am sorry that my sister and I and my cousin never got to know her but at the same time if she had followed medical advice neither me or my sister would be here. From her life I have learned that love is sacrifice and that sacrifice isn’t always bad.
I got my first Christmas card yesterday. I rarely get snail mail and when it isn’t related to my disability it is usually from one of a list of people I can count on one hand. It was from Oz (the only person in my family who calls him John is my grandma which I find mildly confusing because both my Uncle and Great Uncle, her oldest son and her brother are John also,) and it is beautiful. It is now taped on my wall above my computer.
Inside the card was a photo of his three year son, the kind that you put in a nice frame and sit on your desk. I don’t have a frame to fit it yet but you can bet I’ll get one, because I wouldn’t dream of doing anything else. I have referred to my myself as a step parent or step mom before but this somehow makes it even more Blood or not I love our boy dearly and that is all that matters.
I don’t have children yet but since I now plan on it some day I have started to pay attention to parent bloggers and how they write about their kids. The cyberspace revolution didn’t even start until I was mime or ten so I did not grow up with my baby pictures uploaded to Facebook as a matter of course or the milestones of my childhood recorded in a blog. My girlfriend wrote to her firstborn in a blog during her pregnancy and I liked the idea so much I plan on writing an individual for any children I am blessed with. I also know that the best laid plans of mice and men often go awry but I will try anyway. I will do my best not to post stories about them on my personal blog which might them cringe in embarrassment when they old enough to realize that Mommy or Stepmom as the case maybe has a blog and they are mentioned it.
I promise to always ask permission of a child’s parent(s) (both whenever possible( before I write about them or post a picture I may have them on the net. Yes,the world is a lot safer than it used to be and I am not one to jump at shadows but as parenting blogs continue to evolve we as the adults should remember that we are responsible for their safety as well as the outside world’s perception of them and that is a fragile trust indeed. To my partners and the parents of their children: thank for allowing me to share in the blessing that is you child(ren’s) lives and know that I will love and protect them like my own.