Melanie's Thoughts and Musings on Life

Hi Friends, Today I want to discuss something that has been stirring in my spirit for a while. I have been reading blogs from other special needs moms. Some people blog every day or every week regarding their special needs child or their experiences of parenting that child. I can't do that. I have a child with special needs, but I find that to talk about it all the time (or blog about it) is exhausting and emotionally draining. I have enough other stuff in my life that requires my attention that I can't just constantly write blogs about each moment of my parenting experience. I think often, we as parents isolate ourselves because we think that there is no one who understands our journey; let alone our children. I have also isolated myself. For many years I lived in a small city where there were no resources for my son, and I sat at home working at a stay at home job. I was not involved in any community events and I felt so isolated and lonely. The truth is, isolation is...

January 10, 2016 "To everything there is a season and a time, to every purpose under heaven." That's biblical, (Ecclesiastes 3:1) but it is also in a song called "Turn, Turn, Turn" by The Byrds from 1965. I was pondering that as I was reflecting on the changes that Courtland has went through and the things that I wanted to share with you in this post. My little boy, as many of you know, has a rare form of cerebral palsy. He is very functional and becoming more and more independent. As I write this I hear the song in my head again, "Turn, Turn, Turn." He is growing up, and I can't stop that from happening. So much of me wants to treat him like a baby- he is my baby, he is our only child. Yet, I am excited that he is wanting to do things on his own. For a long time because of disability, I did everything for him. I carried him around because he had mobility issues. I dressed him because he couldn't understand the steps necessar...

January 31, 2016 When I was growing up, whenever I would get angry about something, my mom would say "Don't be bitter, be better." That is good advice...(hard as it is to admit that my mom was right about something- now that I am older, I realize my parents weren't (and aren't) as dumb as I thought they were!) Like everyone, I have had my share of ups and downs in life. There is a choice in all of that... to let those experiences make us bitter or to let them mold us into being better. I want to choose the latter. When Courtland was diagnosed with cerebral palsy, I felt deflated. I was relieved to have a diagnosis, but I started to go through a lot of emotions like anger. That is a natural response and it is okay to be angry, but it is not a place to stay or to live. Life is not fair and for those of us who have a child with a disability, it's really easy to become bitter. We are bitter because our child doesn't walk and maybe we have...

September 2, 2016 (Written) Posted to Courtland's Hope Foundation Website-September 5, 2017 I wr ote this blog post at the beginning of the school year in 2016 and it is still applicable today, only today, my son is starting Grade 5!  I am a mom, my child has a disability. He is not defined by it-it is just a part of him. He is inspiring, he is fun... he loves life. I hurt. I hurt because I am a mom that would have loved nothing better than to have a child who didn't have to face challenges from the very start. He has had wonderful opportunities that kids his age often will never have. He has met a hockey player and been invited to an NHL game where he got to go to the locker room and came home with a pretty awesome souvenir, (a signed stick) from the player! He attended the F1 race in Montreal and got to see awesome cars and go to a swanky party where he was the only child- because he was the invited guest of a driver. I hurt. I hurt because I suddenly ...

February 8, 2016 Courtland is really academic. He knows a lot of information (lots of sports trivia) but he also is very hard on himself when it comes to school subjects. He has a spelling bee today. There are 40 words and before bed last night he said "What if I only get 38 out of 40?" I told him that would be okay. I don't require that my kid be perfect at school. I tell him that it doesn't matter how many he gets right, as long as he tries his best. It's almost like a competition to him (not just for the spelling bee- but in other subjects too). Because of Courtland's difficulty with motor function, he has an aide, and she often will scribe for him. If she is not doing that, he fails certain tasks (even if he knows the answers) just due to lack of motor function. He is much harder on himself than we will ever be. Then I got thinking.... Courtland does not often express his feelings about the things that he cannot do because of his CP. I think...

January 7, 2016 Recently a family member told me that before Courtland, he did not know that the term CP meant cerebral palsy, and/or what that means. Later in the conversation, he used the word "disabled" and said he did not want to offend me by using that word. I suddenly realized that it is my responsibility as a parent to educate those around me about my child and his disability, because let's face it, most of us didn't know a lot of stuff about disabilities until we had a special kid.  I think often as parents of a child with a disability or chronic condition, we see so many specialists that we get to know the medical jargon. We tend to forget that others around us don't know as much about it as we do. It is our responsibility as parents to teach people about our kids.  1. Learn how to explain your child's disability/condition in ordinary, general terms. If you have trouble, use Google or have a doctor explain to you in plain t...

March 20, 2016 I often hear parents saying that they do not let their children watch T.V. or play video games and if they do, it is a set amount of time each day.   I AM NOT THAT PARENT! Courtland watches a lot of television and I am okay with that. He watches Treehouse, YTV, (Teletoon if appropriate content is on), PBS, Knowledge Network and of course anything sports related. Courtland is a very engaging little boy. He is interesting to talk to because he knows about a variety of things. Most of which, he has learned from T.V. Because we are concerned about the content, we often police even the kid shows he watches, and he is starting to know the things that we deem appropriate or not. Television has also been great because he has an inquiring mind. He hears words on T.V. and is constantly asking "what does that word mean?" It is funny how as an adult you can understand a word but cannot explain what it means in kid terms! Then there   is the issue of video g...

March 9, 2016 Let's talk about grief. Remember when you were pregnant (or your wife/partner was?) Remember how excited you felt? This child would be a mini you- you dreamed of playing ball with your son, or doing your little girl's hair with pretty pink bows. It was a wonderful time and you were filled with anticipation. Then, he/she was born and you were so overjoyed....... suddenly your dream of having a child was realized. Then you were hit with a catastrophe. Something wasn't right... your heart sank...... it was a diagnosis of a disability or of a chronic medical condition. Perhaps you wept, or screamed not understanding why. The grief involved with having a child with a disability is not like the grief associated with the passing of a loved one. It is often a private grief not shared with others. There are many moments in your child's life that you will celebrate but there are others that will cause a tear to come to your eye. It...

April 1, 2016 Women like Courtland’s mom, Melanie, amaze me. Her son was born in 2007, so she’s still actively involved in raising a boy with special needs. What amazes me is how she found the time to set up the Courtland’s Hope Foundation when her son was young and how she continues to make time to raise and distribute funds to kids and parents while raising her own family. Her efforts amaze me because like Melanie, I am the parent of a child who was born with special medical needs. Like Melanie, parenting a child with special needs changed me. The experience gave me a heart for families whose lives are turned upside down after receiving a diagnosis. Like Melanie, I wanted to do something to help and encourage them. But unlike Melanie, my desire lay dormant for many years after our son was born in 1982.  His first five years of his life were a revolving door of surgeries, tests, and procedures. My first five years of his life were a frantic jumble of sleep deprivation, d...

September 12, 2017 I hope... We say it all the time. I think because of its overuse, it has lost its impact. We hope for good things. We hope that things will turn out the way we want them to.  I s aw an acronym before explaining HOPE as Hold On Pain Ends. I used to think that was good advice; however upon giving thi s acronym more consideration, I realized that to say this to a person whose child has a disability sounds glib and uncaring. The truth is, pain does not always end. There are children who suffer with pain each and every day of their lives and often there is little that their parents can do to alleviate it. So if it is not waiting for a day when pain ends, what is hope and what does it really mean? I looked it up and apparently the word actually means "to have a feeling of expectation." We all have great expectations for our kids. HOPE. Hope that when they were (are) born they would be (will be) healthy, hope that we will be good parents and th...

September 19, 2017 Not everyone is aware of the story behind Courtland's Hope Foundation. It's something I wanted to draw attention to because it is important. WE GIVE HOPE.   When Courtland was diagnosed with cerebral palsy at around age 2, I (we- my husband and I) felt scared and alone. We then realized he needed some medical equipment, a walker. This was an exciting prospect for us, at two years old, he did not even crawl so the idea of a walker gave us hope.  BUT THEN, suddenly we were deflated... Though there is a cost share program in Alberta, parents are responsible to pay up to $500 per year to borrow medical equipment from this cost share program. $500?? We didn't have $500... I was heartbroken and I felt like this situation was hopeless. I knew our child needed that walker, but we didn't have the money. We had to credit card that purchase.   Then I got thinking, we did not have the money to purchase this for our one child. What ab...

September 26, 2017 Recently, I was talking to a friend of mine. We started to talk about families and kids. Before Courtland was born, I always wanted to have a house full of kids, like four but apparently that was not meant to be. When Courtland was about two, we were informed of the diagnosis of cerebral palsy. Shortly thereafter, we made the decision not to have any more children. That was a really painful decision. Several times throughout the course of the following years, I felt incomplete. I felt like we were not a real family because we only had one child. I mourned the loss of the child I never had. It was painful... About two years ago, we looked into our options for expanding our family. Again we were excited and had even started picking out names. Unfortunately, because of circumstances beyond our control, our dream of having another child was unable to come to fruition. I think I would be remiss here if I didn't address the insecurity that I felt....

October 3, 2017 Today I was thinking about the Invictus Games. To be really honest, though I had heard about it, I did not watch any of the events on television or really know about its origin. So just to familiarize myself a little more, I visited the website https://invictusgamesfoundation.org/foundation/story/ The story behind the Invictus Games reminded me about the journey of a being a special needs parent... The word INVICTUS itself means UNCONQUERABLE!  Unconqerable- when the doctor says "Your child won't walk" that INVICTUS spirit rises up and says "JUST WATCH!" When you are faced with incredible odds, but still hold on to HOPE, that is INVICTUS!  I know there are days as a parent when you feel like you have fought so hard for your child that you don't have any more unconquerable INVICTUS spirit left in you. I know you are emotionally exhausted at times because having a special needs child can be draining, but after you cry or...

October 10, 2017 I have been periodically checking out Pinterest, some of the ideas are awesome, others not so much! One of the things I have noticed is that it is full of do it yourself tips; from baking to party planning, to health, and parenting, and everything in between.  It becomes so easy to look at what others have posted and think "that's seems easy enough, I could do that." Not so in my case... I have learned that I am totally inept when it comes to crafting! I would love to be able to, and despite even following instructions, most of my projects turn out to be utter disasters!  Then I got thinking, why do we compare ourselves to others and their abilities? In some ways, I think our "modern technology" does us a disservice. I see all the DIY projects and instead of celebrating the accomplishments of the artist of the beautiful work displayed, I find myself feeling less... See these things that are posted are wonderful, but they also ser...

October 24, 2017 I recently chatted with a friend of mine about the facts of our children's diagnoses. We talked about the surface stuff, the facts.  Then, because we are friends, we got a little beyond the surface and began to discuss why it is that when we talk about our kids, we only mention facts. The facts are just facts. They (usually) do not have emotion attached. I think that this is a coping mechanism. We know the facts and we know that we cannot change them. Then I realized, the emotion is in the details. I can have a conversation explaining all the facts of my child's condition and not show an ounce of emotion. It's when I have to share the details about my child's life that I start to feel emotional (and uncomfortable). I remember all the details, but I choose not go into all that when asked about my child or his diagnosis. Realizing that my son had cerebral palsy was very traumatic for me, so it is not surprising that I am a bit vague ...

October 31, 2017 Today is Halloween! It is so much fun to have your kids dress up and collect candy. This year, I would like to encourage you to think about what it might be like though for a child who has a disability. While there are plenty of costumes that can accommodate special equipment (like wheelchairs), these costumes often take a lot of planning and creating on behalf of the parents... KUDOS to you if you have the creativity to do it!  The other thing however, is that while Halloween is fun, there are children who actually cannot eat candy or even say "Trick or Treat". Perhaps their parents will come to the door because their child cannot get to your home because of stairs. My son was unable to walk until he was 5, so prior to that trick or treating was limited because my husband had to carry him.  I am really glad that there are malls that give out candy and places (like dental offices) that offer candy exchange or buyback; all the fun of trick or...

November 7, 2017 I recently purchased Nike Flyease shoes for Courtland. Flyease are shoes that were developed to help people with disabilities to be more independent. The shoes have a velcro strip attached to a zipper, the zipper allows the back of the shoe to come off, allowing a person's foot to go in easily and they do not require tying of laces. I was so excited when I heard about the concept last year and saw the video about it. I tried to get some at that time and I didn't get anywhere in my search. Then a few months ago, a mom in the United States posted a video of her daughter wearing Flyease. The shoes are also wide enough to accommodate orthotics, SMOs, or AFOs.  I continued to try to find some here in Canada, however when I contacted customer service, I was informed that Flyease are only available on Nike's American website (not in stores) and that Flyease are not available through Nike.ca. They will not ship to Canada through the American website. Then...

November 14, 2017 I was recently watching a movie from the 1980s, The Wizard. It is about a kid who is seemingly autistic and plays video games really well. He is so good in fact, that he goes to the video game championship. Of course he wins and they live happily ever after. (Sorry if you haven't seen it) Then, I got thinking, this movie was made in the 1980s. It is appalling to watch... several times the movie called the kid the "R" word or people asked "What's wrong with him?" Nowadays, no one (especially in a movie) would say something like that! We as a society have come a long way and it is reflected in the language of our culture. Political correctness has certainly done a service to those with disabilities. Words like handicapped, crippled, or the "R" word are no longer acceptable norms in our culture. Even those who are not directly affected by a disability are stepping up to change the conversations and words where disabilitie...

December   5, 2017 Often as the holiday season approaches, we get busy! We are busy with our kid's Christmas concerts, piano recitals, office parties, not to mention shopping for the perfect gift for each person on our list! I think sometimes we get lost. We put so much into trying to make Christmas be a perfect holiday, when the reality is, the Christmas we see in movies and T.V. is NOT REALITY! I have to admit, I have been trapped in this cycle too, and then feel let down once Christmas is over because it didn't live up to my expectation of what Christmas should be... Then I think back to last year. 2016 was a big year for Courtland's Hope Foundation, we were able to purchase equipment for many children, but my favorite part was Christmas... We were able to give a bike to a child, a child who may have never had the opportunity to ride a bike because adaptive bikes are expensive. When I saw the joy on that child's face, I got a little choked up. You see, Chris...

April 12, 2018 In the last little while, I have heard people use the "R" word to describe something that they think is dumb. Every time I hear it, I cringe. I cringe to think that I too was once a repeat offender.  When I was growing up, I had a friend who had a brother who had down syndrome. I called him the R word once, and my friend got upset. I didn't understand it, and quite frankly I thought "What's the big deal?" Now that I am older, I understand what the big deal is. My child has a disability and whether or not a person specifically has down syndrome, sometimes that word is still thrown around. YUCK! I feel yucky just thinking about it. A couple of months ago, there was a comedian on Netflix who had a stand up special in which he used that word. There was a petition campaign for Netflix to remove that comedy special because it was offensive.  I am not sure what the outcome of that was but at my last check, there were 94 000 supporters...