Why a Foundation?

I have not been writing many blog posts lately, mostly because I have been busy with other stuff, including the running of our foundation.

I just wanted to give you a glimpse into why I started Courtland's Hope Foundation.

When Courtland was around 2, we found out he had Cerebral Palsy. He was not reaching the expected milestones of sitting up, crawling, trying to walk, or talk. I didn't know what to do, or where to go for help.

We wanted him to excel, and to do so, he needed some medical equipment, specifically a walker. We went through Alberta Aids to Daily Living, and found out that we would be responsible to pay $500 of the cost of the walker. (the original price is around $4000, but the portion we had to pay was $500). We didn't have the money....... Unfortunately, that had to be put on our credit card. Then, I got thinking, we only have one child and we can't afford $500, what about families who have a few children, are trying to provide food, shelter, clothing, and they have mortgage and car payments? Where do they get the money from, and where do they go to get help in paying for that stuff?

I thought about for a while, and it really bothered me. One day, I don't know the date, but I remember very clearly, that I was driving around and suddenly I had this thought... "You need to start a foundation for people in the same position as you were." I came home and told my husband, and we began the ground work for "Courtland's Hope Foundation." We called it that after our son Courtland, because he has given us so much hope, and we knew that it would be his hope that children with disabilities would have access to medical equipment.

Starting this was quite a process. There is a lot of government paperwork! I assembled a group of people who shared in my vision, and they became our board members.

To date, we have helped children with Cerebral Palsy, Down's Syndrome, some not yet diagnosed global development delays, a child with a 4q duplication, and  a teenager with Muscular Dystrophy. There are always challenges in taking on something like this, but the rewards far outweigh the challenges. We continue to help kids, and soon we will be expanding to provide a support group for families who have disabled children.

Courtland's HOPE Foundation is here for you! Keep on hoping!

Take Care of You!

Today begins another chapter, Courtland is starting Grade 3! I am glad that he is going back to school- it has been a long, lonely summer for him……then there is the guilt that I feel for not making summer a better experience for him.  I work from home as a medical transcriptionist, and I must admit, that although I didn’t mean for this to happen, I am afraid that he played video games far too often, just to keep himself busy as I worked.

I am starting to realize that I can’t beat myself up about that stuff. I do my best to engage with Courtland, and we did do as much as we could with him throughout the summer.

Suddenly, I realized that I need to take time to slow down and relax. I feel like I have been running on fumes for the last little while. I have been burning the candle at both ends for a long time.  I think this is true of a lot of parents, (moms especially); because we are so busy trying to be a great mom, and balance career and home etc.

We went away for our anniversary. It was just one night, but did I ever need that! I was a time away to refresh and relax. It occurred to me that if I am tired and I don’t take care of myself, I can’t be a good mom and take care of Courtland. Plus, I am much nicer to be around when I am not so uptight!

So to all you moms, in the midst of all your busyness of back to school, take time to take care of you!

Friends

We all need friends- we need people to share our lives with, (as women) we need friends to bring balance and perspective though it is great to have a spouse, we need other friends.

As previously mentioned, having a child with special needs, often leaves us lonely and isolated. We fear judgement and lack of understanding from the world around us, because we have encountered those who are less than kind about or to our children. We fear that others who have not walked our journey won’t know how to relate to us or our kids, so often we are the ones who create walls trying to protect ourselves from negativity.

I cannot stress enough the importance of good friendships, especially in light of the challenges we face.  I recently have become friends with some moms on facebook who have children with disabilities. It matters not that out children share a diagnosis, but rather that someone else can appreciate and understand the life we lead- just perhaps maybe in a different capacity. We need friends from all walks of life, each person we meet and become friends with has the potential to make our lives better- just by being a friend.

In my personal journey of being a mom, I have been so lonely (it’s ok to admit it if you feel lonely too).  I intend to start trying to seek out parents in our community who have special kids who might need a friend. One of the main focuses of our foundation is to build relationships. Courtland’s Hope Foundation is more than about just meeting the financial needs of families with special kids; we are here for you throughout the journey….. You are not alone!

Another Child?

Recently, I read an article that got me thinking about having another child. It was good, but I just wanted to put my own slant on it.

I read a quote that said “our biggest obstacle is the picture we have in our minds of how things should be.” Growing up, I had the idea I would be married in my 20s, and have two or three kids (though really I wanted 4) and just live happily ever after. That did not turn out to be the case….. I did not get married until I was 29 and didn’t have a child until I was 30. I had a lot of complications during pregnancy and had a month long stay in the hospital. After Courtland was born, I was in really rough shape.

After about a year or so, I thought about having another child. However, I already knew something was amiss with Courtland, so I just did not pursue having another one.  THEN, when he was about 2, he was diagnosed with cerebral palsy. Well, then I just had a lot of stuff to deal with….like what if we have another child and our younger child surpasses Courtland in what he/she can do- how will we feel, then is it fair to Courtland or the other child because Courtland needs more of our time? I thought I would feel awful and that it would not be fair for either one of them.

I WAS NOT MENTALLY PREPARED to have another child and that was/is okay.

If you have a child with special needs, it is difficult to decide whether having another child is the right thing to do. Some people feel that the other child gives them what they felt they missed out on with their special needs child. It took me a long time to be okay with the idea that I was not going to have another child. In fact just recently, we talked about it again, but now, we are just feeling old! 

So here is the take away- don’t let others pressure you to have another child if you are not sure.  In the midst of looking after your child, you need to take care of yourself, physically, mentally, spiritually. Stop allowing yourself to feel like you are not a family if you only have one child, and last (but not least) stop letting that picture in your head cloud the reality of what is- If you have a child who requires all your attention, and you are not sure if having another one is right for you, then just love the child you have- there is nothing wrong with only having one!

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!