Be Kind

I noticed that at the end of every episode of the Ellen Show, she says “Be kind to one another.” That is such a simple message, but she says it every day- why? She wanted to do something about the bullying that consistently happens in our culture. Repetition helps people receive the message.

Recently I saw a quote saying “Everyone is fighting a battle you know nothing about, so be kind, ALWAYS.”  I want to stay away from giving my opinions and advice in this blog, but this is a good piece of advice.

Sometimes, we see people with children who have various disabilities, and we feel empathetic towards them. Feeling empathetic is good, but your empathy does not always need to be expressed. Just a smile can change the course of day- no need to try to compare experiences or somehow try to cheer me up by telling me about your uncle, cousin, sister, friend who also has a disability- that’s not small talk, and really, you don’t know about our journey. This is not me being negative, it’s just reality. I don’t mind talking about my son or his CP, but just be sensitive in how you ask questions.

There are lots of kids out there who have disabilities, and parents are the best advocates and educators. We work hard to give our children all that they need to live healthy and happy lives despite the medical diagnoses. However, we are not immune to mean or insensitive comments. (Sometimes the best intentioned person can ruin a day with their words).  Be sensitive,  but most of all, BE KIND!

Innovative New Stuff

I saw an article a few days ago about a young man who has a disability and wanted to go to college, however, he was embarrassed because he is unable to tie his shoes independently. I suspect this is the case for many people who have disabilities. Courtland is 8, and he does not have the fine motor function to be able to tie his shoes. Tying a shoe is something (we who can do it) take for granted. Think about all the steps involved…..

This young man wrote a letter to Nike and they were so moved, that they decided to make a shoe that he could get on independently, and not have to tie. You can read the article if you are interested.

http://news.nike.com/news/the-flyease-journey

Though I am excited about this, and what it means for kids and adults with disabilities, I see a few potential problems. Like, I have looked everywhere for these shoes, even http://www.nike.com/ca/en_gb/  and I can’t find them. The article mentions that they will only be available for a limited time, and I suspect the price will be hefty (If I could find a price).

I have also found a website called Firefly- http://www.fireflyfriends.com/  they are a British company that makes aids such as the upsee, which helps kids who are immobile to walk with their parents. Again, being that this is an overseas company (and extremely innovative) their products come at a great price (the product cost itself, plus the cost of international shipping).

I can’t quite understand why everything made to make the life of a disabled person easier, has to cost so much money.  I want my child to have everything that will make his life less difficult; unfortunately, I don’t have the financial means to do so. This is why I started Courtland’s Hope Foundation. I want families to be able to give their children everything that they will need to live a full and happy life in spite of the challenges that they may face.

There is NO SHAME in asking for help. Courtland’s Hope Foundation exists to ease the financial burden of expensive medical equipment.  If you have a child with a disability, and are unable to address his/her medical needs due to lack of financial resources, please contact us.

Additionally, this is an effort we cannot accomplish alone.  If this is an issue that touches your heart and you would like to help, (financially or otherwise, please visit our website at www.courtlandshope.org) Thanks so much!

HOPE

Hi, I am Melanie, I am Courtland’s mom.

I decided to start this blog because I see so much over the internet (about disabilities) that is just so negative. Plus, I wanted a platform to share our story and journey, and to encourage some of you along the way.

As Courtland began to grow, he was not reaching the expected milestones. To be honest, I just thought he would do things when he was ready…… Deep down, I knew something wasn’t right, but I was in denial. When I finally reached out for help, (and many doctor appointments in between) we were told that Courtland had a rare form of cerebral palsy. I remember that phone call like yesterday, I was relieved that he had a diagnosis, but sad because I suddenly realized that our lives would never be the same.  Courtland was 2 at that time.

Medically speaking, we were told that often, children who do not sit up on their own by age 2, will usually never walk.  I was thankful for the frank discussion with the doctor, and as a parent, you never stop wishing, hoping and praying that that won’t be the case.  BUT, I am also keenly aware of the fact that we can wish, hope and pray all we want, and sometimes things just don’t turn out the way we expect. I wanted so badly for my child to sit up, to talk, to walk, and to be a so-called, “normal” child. I resigned myself to the fact that he might never do some of those things, because I didn’t want to be disappointed.

It has been a long, difficult road. Having a child with a disability is lonely. I confess, with all the love and support from family, I am still lonely. I don’t really have friends, because people who don’t have a child with a disability don’t quite understand our life. (This is not their fault).

By the way, Courtland is now 8, and he does all the things that we never knew he would do. He sits up, he talks and he walks! Our journey is not over just because he has reached these milestones.  There is so much wrapped up in being a parent of a child who has a disability… I know that Courtland will have many difficult days ahead, because that is just life, but we are trying to approach each day with love and grace, and though I look forward to the future, we live one day at a time. Truthfully, I believe many parents with special needs children do that, because getting through today is a coping mechanism- and guess what? It is okay to live for today!