Thursday, February 25, 2010

Take a Big Bite Out of Life

This post written by Philip Li-Wei Julio Chen, Mississauga, ON. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

Flipping through the pages of a seemingly perfect spring edition of Martha Stewart's Living magazine, one finds innumberable recipes, with lists of natural ingredients alongside cooking instructions. What is not mentioned in such lists, but remains of great importance to the resulting taste, are the chef's experiences, those of his/her assistants, the available kitchenware and the overall condition of the kitchen under which these ingredients are prepared.

While studying Health Sciences at university, I similarly examined the "recipe" for "health". In doing so, I was instructed to put on a pair of biomedical lenses, filtering out personal experiences, the available resources and social conditions. Moreover, this biomedical lens prompted me to mechanically dissect the concept of health into pathological terms, cell counts and malfunctioning body parts. And finally, to discard the pith - the person - as a whole.

My experiences with people who have different abilities and needs have opened up my eyes and helped me to recognize that beyond the absence of disease, health is a state of well-being, deeply connected to engaging human connections, meaningful occupation, the environment, a lived spiritualityand one's right to expression and curiosity. By putting "the person" back into the recipe, we are able to focus on everyone's unique abilities and strengths, as well as understand that being alive and living are two vastly different flavours.

Furthermore, working with people with different abilities in therapeutic programs has taught me just how grand life is. A vivid memory comes to mind: a young adult succeeding in writing his own name independently for the first time in his life exclaims, "Oh, look, I can write my name! I can do it!" In this fast-paced world, we have forgotten to appreciate our body and mind. We take our different abilities for granted; we have forgotten to celebrate.

Yes, you can do it! Celebrate every accomplishment, big or small.

Appreciate your mind and your body.

And go ahead, take a big bite out of life and savour health in its entirety and the joy of living.


Thursday, February 18, 2010

Sharing My Life with Eric

This post was written by Lisa Raffoul, mother and co-founder of Ensemble. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

I remember so vividly the day that Eric was born and every day that followed. After he was born, they placed him in my arms. I looked at him and thought that he was perfect! His face was pink and round, and he looked so peaceful and sweet. I couldn't seem to take my eyes away, for he was more handsome than I had ever imagined. For that one moment, time stood still and it was only me and my baby. That moment would never return.

The first few years after Eric was born were extremely exhausting and emotionally intense. Eric hardly slept, there were numerous stays in the hospital, and we also had another child, Adam, who was two years old. I was so tired that I felt like I was floating through the day. My husband, Lou, and I would take shifts so that we could get our rest; he would stay up late and then wake me up around 2:00 a.m. so that I could take over. I was lucky to get at least three hours of sleep and then I was up to face the day. Eric screamed for most of the day and it was a challenge to spend time with Adam. Once Lou got home, he would take over and I could focus on other things. My parents were a huge help to us and I honestly don't know how we would have made it through this time in our lives without them.

This went on for about four years. During that time, I learned to ask for help and realized that although I was the mom, I definitely needed in-home support. It was very difficult to have someone come into the privacy of our home, but we knew that we couldn't do it alone.

Our lives were filled with doctor's appointments and medical tests. Everyone was trying to figure out what was wrong with him; to try to find a possible "fix". After years of testing and trying to figure out a diagnosis, I said to Lou, "you know what, enough tests, enough questions. He is who he is and that's it. What we have to do is make sure he's happy and offer him the best life we can, and let's carry on with our life."

I believe this was a turning point for us. We no longer viewed Eric as our sick child, but rather just our child. I can't deny, our situation was still very overwhelming and difficult, but at least we stopped letting it consume our lives.

Eric has been our greatest teacher about children. We know that every child is unique. Too often our children are assessed by traditional fast can they run, how high can they jump, how far can they throw. While holding a spoon independently may be an easy task for a typical child, for Eric, it was a major milestone achievement. Eric has taught us to look for the uniqueness in all children and realize that each of them has gifts and contributions to offer and that they will achieve success at their own pace according to their own abilities. We have learned to pace ourselves, nurture one another, take each day at a time and appreciate the good in our lives. There is a cliche that says, "success doesn't come without hard work." In our circumstance, the work is grueling, the pace is demanding, but for all that we have learned and for the wisdom we have gained...priceless!

"Ensemble is a parent directed resource for families that have children with disabilities and for related professionals. We offer a continuum of support from the beginning of diagnosis through to adulthood."

Photo: tibchris


Thursday, February 11, 2010

Seen Any Miracles?

This post was written by guest blogger, Kara Ferris.

There are many people who, when I share that I am very passionate about working with people who have disabilities, ask if I pray for them - if I’ve seen healing and miracles. Well, let me share with you a little bit about some of the people that I know:

Bryce. You sit so contently in the presence of your family. You tenderly hold your father’s hand; a young man of 19, you are unashamed to show and receive love. An incomplete spinal cord has made it impossible for you to use your legs, which sit still in the chair beneath you. Instead of running around, busy with things that consume you like so many of us often do, you have learned to be still and cherish every relationship that surrounds you.

Brooke. With severe autism, seeming not to know how to function in this society, Brooke doesn’t understand personal space. She doesn’t know a stranger; and she seems to gravitate towards those that others most often leave rejected and ignored, wanting to meet them, befriend them, ask them for a kiss on the back of her hand.

Our sweet little Brycen. Your parents don’t see the negative in Down syndrome. Instead, they celebrate your every milestone, your sweet love for Jesus, and refer to that 13th chromosome, not as a syndrome but the gift that you’ve been given as the extra chromosome of worship! I’m learning from them to appreciate, instead of criticize, to embrace my own children and celebrate their differences.

Robert. At 32, a motivational speaker, you’ve become a role model for many others who have Down syndrome, as well as for those of us who do not. You inspire everyone, and tell them that they can grow up to be just like you, not because you think more of yourself than you really should, but because you are secure in knowing who God created you to be. I wish I could be so secure and live up to my God-given potential the way it is happening in you.

Justin. Diagnosed with Angelman Syndrome, which involves a severe mental delay, causes him to behave more like a 2 year old than the 17 year old that he is in his 6 foot tall, 200 pound body. The unusual trait of the “syndrome” is that he has an unusually happy demeanor, engaging smile and frequent laughter. He’s reminded me of the joy of experiencing a noogie, laughing without inhibition at silly things like Sponge Bob, and taking the time to savor the connection that is made with him so quickly, kissing away his booboos. Not only is it important to give Justin love, but to receive his love as well. I think we all need a touch of Angelman Syndrome.

Sarah’s parents were told that she wouldn’t live, and so they brought her home from the hospital, with hydrocephalus, physical anomalies, emergency after emergency procedures, choosing instead to focus on the future that only God could give. Now, at 26, Sarah knows that each and every life around her is one that deserves to be cherished and prayed for; going into nursing homes and visiting the lonely, sharing God’s love to the forgotten, and at the end of the day, she appreciates every sunset with deepest gratitude, as if God created them just for her. Sarah, you’ve taught me to live in the moment and cherish what I have been given.

Joni Earickson Tada, a woman I’d call one of my greatest heroes. I’ve wiped her nose, cut up her food, and worked right alongside of her. I’ve learned about full and complete surrender, totally yielding to wherever God will take you, doing whatever it is that he is calling you to do, while knowing at the same time that it could never be accomplished in my own strength. She has built a ministry that touches millions of lives through Joni, and it all happened after she became paralyzed from the neck down. I have used my own healthy legs far too often to carry me down a path that has led me away from God’s will for my life, rather than toward it.

And finally, Nick Vujicic. No arms and no legs, the smallest man I’ve ever known, yet with the biggest heart and an even greater spirit, who exudes so much hope that God is using him to touch the world! Doors in Muslim countries are swinging wide open to receive him, as well as in the Mormon Tabernacle where they have welcomed him in. People by the hundreds of thousands are receiving Jesus Christ as their personal Savior because without arms and legs, Nick cannot focus on his physical appearance, his physique, building up his ego. He’s chosen not to be bitter about what he does not have. Instead, he is focused on revealing our Father’s heart for his children, because that is what he has pursued and that’s exactly what God has given him. Makes my complaining about my aging body seem rather frivolous.

So, when I’m asked if I’ve prayed for healing for my friends and if I have seen miracles happen, my answer would have to be, yes, yes, I have. And because of the Sovereignty of our God and who He is, the miracles and healing have not only happened in the lives of my friends, but I’ve found that they are also happening in me.


Thursday, February 4, 2010

Special...Every Day...and in Every Way

This post written by
Greg Bandler, Toronto, ON. Excerpt from "The IDEAL WAY to Cook: Food for Thought."

For many people, the label "special needs" signals a person who requires special concessions - big and small. But the "label definition" is often quite different for the parents, siblings, family members and close friends of "special needs" kids. Quite simply, the label should be shortened to a single word: "special". Certainly an applicable description for our son, Michael, now age 20.

We have special times with our Michael on a daily basis. It's wonderful to enjoy and experience life through his particular lenses and filters. He and I recently took in our first Toronto FC soccer game together at the BMO Field on the CNE grounds. I was graciously extended tickets at the last minute, possibly because the ticket holder confirmed that the weather forecast of a cold and wet Thursday night appeared accurate. No matter. I advised Michael to get ready and dress warmly - we were off to the soccer game. He brought the enthusiasm and anxiety of a five year old - so prevalent in our extremely social and kind-hearted special child. We endured the most horrendous traffic jam - a Toronto traffic jam of epic proportions! - to arrive in time for the opening kick-off...of the second half...Even so, our spirits were not dampened.

The game was fast moving. The home team enjoyed a one-nil advantage and defended strongly throughout the second half. It was interesting to see how Michael pointed out other special people in the crowd immediately upon sitting down. Dad, look at the guy three rows down - he looks drunk - has he been drinking? Dad, why did that guy hurl a red streamer at the player who was on the sideline doing a throw-in? He shouldn't do that - why did he do that? Dad, why are all those people standing in the end zone singing and acting rowdy - should they be doing that in a public place? Of course, none of the questions were posed at the socially accepted "whisper level". No, they were posed at full audible volume for anyone within earshot to ponder.

After the game, we returned to our van in the parking lot, staying dry and warm. We waited to chauffeur Michael's 16-year-old sister and her friends home from the concert they were attending at Ontario Place. In the end, we had a two-hour wait, but it zipped by in what felt like minutes. We did some people watching. We decided to walk a bit to see if we could hear the music at the outdoor concert more clearly. We had a hot dog from the street vendor. Based on the number of dogs he would soon sell from his BBQ, we calculated he must live in a mansion! We chatted and listened to music on the van radio.

Michael reinforced his special place in my heart with the simple phrase, "Thanks, Dad. I love spending time with you. Can we do this again?" We listened to more music. And we people watched more. We were in our own special world. So much so that I hadn't noticed the van's battery drain with the lights and radio on. We needed a boost, albeit not in an emotional sense. It had been a special night - from start to finish - despite the traffic, despite the rain and cold, despite the wait, or perhaps, because of the wait.

Enjoying our children for who they are and experiencing life through their special lenses and filters is indeed a privilege and a reminder of just what "special" truly means.

Our kids are indeed special...every day...and in every way!

Photo: SamVincent
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