Hellobee

In honor of World Cerebral Palsy Day (which was October 1st), I thought I would share some of my favorite blog articles by other parents of kids with CP and individuals living with CP. I haven’t gone into D’s CP diagnosis, but we’ll get there – it was a big point in his journey! Cerebral palsy can mean a huge spectrum of things, from slight weakness in one limb to difficulty moving all limbs or muscles. For now it appears that he will have a mild form (more on the weakness on a few limbs side). Since D is so young, I haven’t really connected with the CP community – but I am a big fan of the blogs I’ve stumbled across. Just a warning, I sobbed when reading some of these, but they may not hit you as close to home as they hit me!

 D approves of sharing these stories!

Transcending CP – As Long as its Healthy

“ “Are you hoping for a boy or girl?”

It’s a question that people often ask expectant parents, and it seems that the parents almost always respond with something along the lines of, “We’ll love the baby either way, as long as it’s healthy.”

I realize that this response isn’t meant as a jab toward people with illnesses or disabilities, and it’s perfectly natural and more than okay that parents would hope for their baby to be healthy. After all, nobody wishes for their son or daughter to suffer. I get that, I really do. At the same time, I wish that people would think about the implications of their words. As a child, I remember hearing people say that seemingly-innocuous phrase, and it hurt.  They won’t love their baby if it is born like me, I remember thinking to myself…“

Love That Max: 10 things I didn’t know about cerebral palsy—until I had a kid with cerebral palsy

Cerebral palsy doesn’t disable your personality. Max’s spirit isn’t disabled. Neither is his personality, his disposition or who he is at heart. People just need to look past the physical disabilities to see the person in there. Same goes for adults…

Kronicles of Kai: We Are OK

As he grew it became more apparent that he was delayed, and now here we are today: Kai is in a wheelchair, he does not walk or talk, he wears diapers and he drools. I’m not gonna lie, on paper he looks pretty grim. But then there’s that infectious SMILE!

So now, when I am with Kai out in the community we are met with a variety of responses. There are people who make great eye contact and smile, and may even say hello or engage us in conversation. There are people who act like they are not looking, keep their heads straight forward and try to sneak a peek as we walk past. There are others who blatantly stare – with looks of concern, fear, sadness, pity, disgust. It’s these last people that really get me. Sometimes I want to scream at them, but of course I never do – they obviously don’t understand the joy that is Kai – so I just keep smiling and walking. In one instance, I was walking through Target with Kai and a woman walking by said to her friend, “Oh, that’s so sad.”

What? He’s not sad, look at him! (was what I was thinking). And it that moment I realized that I did not want people to look at Kai and think SAD…

Premmeditations: Party Blues

…You see a few weeks ago, Boo got his first ever invite to a birthday party that wasn’t a celebration for family or a close family friend (…)

I looked hard at the invite. Maybe I shouldn’t take him. Maybe I should make an excuse to avoid any awkwardness.

Wait, hang on. Was I actively excluding my child? Crikey, if I exclude Boo from activities what hope does the rest of life hold? No, he’d been invited and the little boy whose party it was told me one morning at drop off how pleased he was his friend Boo could come…

Love That Max: 9 ways to always have hope for your child with special needs

• Toss the child development books. Unsubscribe to any of the “This is what your baby/child is doing now!” online updates you registered for before you knew your child was going to have special needs. They will only make you compare your child’s progress to what is typical, and that will only make you despair. Your child is on his own timeline, and nobody else’s. Put that on a Post-it and hang it on your bathroom mirror.

• Look at what your child is doing today. Of course you want him to walk, talk, ride a bike, eat by himself, sing, and do any number of other things. But relishing and appreciating the stuff your child is able to do in the here and now will give you more confidence in his future. Contentment breeds hope; worry breeds more worry.

Being the big brother of a wild five-year old brother and an adorable three-year old sister can be hard sometimes. It’s difficult not to notice them, and they constantly seek attention from anyone willing. I do admit that I have fun watching them play and listening to them run around the house, but sometimes I am SO over it! I want to play and be noticed too. I think, perhaps, that people might not know how to play with me. It’s difficult to know what to do with someone who cannot walk or talk, but I want you to know that I really love to be around people. So, I’d like to talk about things I like to do and how people can play with me…